I have carcinoid cancer or carcinoid tumor. I find that talking about my cancer is therapeutic. Also, carcinoid is unusual enough that I hope somebody reading this may decide to go to their doctor and get tested because their symptoms are similar. Many doctors are not familiar with this and some doctors are familiar but don’t understand. My story is not very unusual. Many carcinoid have symptoms that go unexplained for years or they don’t have symptoms but the tumors are discovered by accident during unrelated procedures. The story goes that doctors in medical school are taught that “if you hear hoofs, don’t look for zebras.” In other words, go for the obvious first. We carcinoids say that “if you hear hoofs, look behind you, it might be a zebra.”
More than 5 years ago (today is Feb 12, 2012) I developed chronic acid stomach. There was a constant burning in my stomach. Doctors reponded by prescribing Rantidine (Zantac) with antacid tablets as needed.
Four and a half years ago, I had to quit a week long bicycling event after the 1st day (99 miles) because I had a bleeding ulcer. Doctors felt it was from taking ibuprofen, told me not to use it and prescribed omeprasole (Prilosec). The ulcer was cured but the acid stomach returned quickly. By March 2011, I was taking omeprasole and rantidine and antacids.
February 2011: I began experiencing deep chills in the evening and night sweats and low level diarrhea. In April, I had a terrible cough. A chest x-ray was inconclusive so I had a CT scan. The CT scan was suspicious and also revealed two “masses” in my liver. One was tennis ball size.
I was placed in a hospital immediately. They tested for many, many illnesses. The cough turned out to be a viral infection that went away by itself. They drained the liver tumor and tested the fluid many ways. After five days a lab result was finally positive: “consistent with neuroendocrine tumor (NET)”.
What is it? A NET is a growth that affects the parts of the body that produce hormones. It is often malignant and can produce hormones itself and cause serious illness.
May 6, 2011: had a needle biopsy of the tumor and was told that I had carcinoid tumor also called carcinoid cancer.
What is that? Carcinoid tumor is a neuroendocrine tumor often found in the midgut, that may look more benign but produce seratonin and other hormones that will lead to symptoms called carcinoid syndrome. They are often not benign but metastasize to other organs most commonly the liver. Typically they grow very slowly and are found by accident. It is not curable. Generally, it keeps generating new tumors forever.
May 10, 2011 blood tests: seratonin 8 times higher than max health range, chromogranin A almost 3 times higher than normal range, gastrin 25% higher than max. Dr. tells me the gastrin tells the stomach to generate acid and is almost certain to be the reason for my gastic problems including ulcer. The chills and night sweats and diarrhea are likely part of the syndrome.
June 1-2, 2011: Had an octreoscan which specifically may pinpoint all the tumors. It did show six tumors in the liver but did not locate the primary in the intenstines.
June 8, 2011: Started 14 days of self-injection of octreotide 3 times a day. These two weeks establish that I am not allergic and that my condition improves. Symptoms get much less noticeable and I fell better overall. The octreotide counteracts the hormones manufactured by the tumors and in some cases can stop tumor growth or shrink the tumors.
June 22, 2011: Received first injection of Sandostatin LAR 30 mg. This is a long lasting version of the octreotide mentioned above. It is given as an injection into the buttocks, usually every 4 weeks. The frequency can be changed. A major side effect is that over 50% of patients who use it for more than a year develop gallstones and/or gall bladder sludge. Since I will likely use it for the rest of my life, I can look forward to that. Surgeons who remove carcinoid tumors will sometimes remove the gall bladder as well because of that side effect. On the plus side, it seems effective in reducing the symptoms.
June 26, 2011: Colonoscopy and endoscopy to try to locate the primary tumor in the intestines. Nothing found. I am told that the primary could be less than a centimeter long and very hard to find.
July 25, 2011: Next injection of Sandostatin, increased dosage to LAR 40 because I was still experiencing symptoms in last week of cycle.
August 10, 2011: Had a treatment called chemoembolization in which a catheter is run up to the liver thru an artery and chemo (in this case adriamycin) is put into the liver and then a blocking agent is used to stop up the artery so that the tumors get hit by chemo and they do not get oxygen thru the blood. The procedure lasts over an hour. Even though the team took all the standard precautions that are used to prevent a carcinoid crisis, I had a crisis. My blood pressure dropped very low and my pulse dropped to 30. I spent the night in intensive care and was discharged the next day.
For over 3 weeks, I had pain and gastric problems and dizziness. When that finished I started feeling much better!
The acid stomach that had been with me for 5 years was not there by the end of September! By December, I quit taking omeprazole entirely. The chills and night sweats were reduced, but still occurred during the 4th and 1st week of the injection period. They also occurred when I changed my daily routine. In October, we went to Scotland to visit our son and the night sweats were actually quite heavy every night.
November 10, 2011: had a CT scan. The Doctors say there is no visible tumor activity in my liver! This mean the tumor growth has stopped. No wonder I feel better. I will probably need CT scans every 3 months to make sure no new tumors have popped up and the old ones have not started to grow again.
It is now February 2012 and the sweats and chills are still occurring to some extent between injections. We are going to try injections every 3 weeks.
February 13, 2012: I had a CT scan and the results doctors tell me that the largest tumor is shrinking, there is no activity and no new lesions in my liver. This means no surgery should be needed at this time.
February 29, 2012: Met with surgeon. Contrary to my statement above, he thinks surgery may be needed. The largest tumor in the liver is 6 cm (about 2.4 in). This is his tipping point toward surgery. He is scheduling me for a new octreoscan to try to determine how active the tumor still is. He is planning to discuss the CT scan with radiologists, surgeons and oncologists to get their suggestions of how to proceed.
March 15 & 16, 2012: Had the octreoscan. One result is that we see no new tumors. Waiting to talk to surgeon for further info.
March 20, 2012: For an effective scan last week, I had to wait until today for the sandostatin injection (4 weeks). Interestingly, the chills and sweats just started happening today. However, I am experiencing more random pains in my abdomen. Not bad, but more often, in more places and sometimes slightly more uncomfortable.
March 23, 2012: after discussions we decided to do nothing for the next few months and then revisit.
April 17, 2012: Diagnosed with atrial fibrillation by oncologist. Could be related to Sandostatin or carcinoid.
May 18, 2012: Cardiologist confirms atrial fibrillation (afib). He does not think it is related to Sandostatin or carcinoid. He thinks that my lightheaded and/or winded episodes are due to afib, not carcinoid. Treatment to be determined.
May 29, 2012: Had CT Scan a week ago. My oncologist says the main liver tumor has shrunken slightly, the others are stable and no new lesions are visible! Good news.
July 2, 2012: Having worn a heart monitor for two weeks, I met with a new cardiologist, a specialist in Cardiac Electrophysiology. We determined to start a heart treatment consisting of a Cardioversion on August 6, 2012 and warfarin anticoagulant.
July 9, 2012: Cardiac stress test inconclusive. Afib masked any other results.
July 13, 2012: Nuclear cardiac stress test indicates no blockages but perhaps weak pumping action.
July 23, 2012: Echocardiogram shows no problem with pumping function.
August 6, 2012: Cardioversion procedure on my heart for afib. It appears to work!
August 28, 2012: CT Scan, liver tumors stable and no new lesions visible.
December 18, 2012: Blood Tests and CT Scan indicate still stable.
January 30, 2013: Symptoms recurring. Blood tests may indicate tumor activity.
February 7, 2013: Symptoms getting worse. Blood tests show increase in seratonin, perhaps upward growth curve. Have seen oncologist, we will schedule another chemoembolization and schedule a visit with an oncologist at University of Colorado, perhaps for clinical trials.
February 21, 2013: Had a bone scan yesterday checking for cancer in bone. Good news — no cancer. Bad news — degenerative disk disease and arthritis. Also, met with oncologist University of Colorado Cancer Center for a second opinion. I believe that he is going to recommend surgery at least for my liver instead of the chemoembo which is planned for March. My heart problems seem to be a moving target. Last week perfect EKG, oncologist today finds irregular heart beat and high blood pressure.
March 27, 2013: Met with my surgeon. He wants a heart ultrasound to make sure that I am healthy enough for “medium/large” surgery. If he is satisfied, we will go ahead with surgery after Laurie and I return from Scotland in May.
April 5, 2013: Had echo cardiogram and cardiologist says that I am healthy enough for surgery. Ever onward!
May 2, 2013: Scheduled surgery for June 25 with a pre-surgery physical June 7.
June 7, 2013: Pre-Op physical is done and I am healthy enough to go ahead with surgery.
June 25, 2013: Surgery… Gall bladder removed, about one half of liver removed, searched common accessable places for primary tumor. Not found.
June 30, 2013: Returned home from surgery. What a wonderful thing to say!
July 22, 2013: Recovering, blood test numbers have gone quit low. Yeah!
August 25, 2013: Two months after surgery, no diarrhea, almost no chills, very minor night sweats. I tire easily but things are going well.
September 25, 2013: Three months after surgery, rarely diarrhea, almost no chills, very minor infrequent night sweats. I feel better than I have felt in at least 3 years. I think that big tumor in my liver was depressing me and making me feel tired all the time.
October 2, 2013: Have CT Scan to form baseline since surgery. Doctor’s office calls a few days later to say “No Surprises”. Two spots on liver which were there before surgery.
October 24, 2013: Have octreoscan to form baseline since surgery. Again no surprises, the two spots do light up the picture so they most likely are carcinoid tumor. Doctor says watch and wait.
February 7, 2014: Experienced a heart rate of only 35 last week. Doctors are investigating. Will wear an event monitor for a week.
February 24, 2014: The event monitor was not conclusive. I did have a low heart rate at once during that time. As of today, I have to wear it for a month.
April 7, 2014: Returned the cardio event monitor a couple of weeks ago. Today the report is that there is occasionally a slowing of heart rate and there is an irregular beat where one part of the heart beats before the rest. No AFIB. No carcinoid heart disease. No treatment is recommended. However a CT Scan has revealed a lesion on my urinary bladder. That will be studied next week.
April 16, 2014: Saw a urologist and had a cystoscopy today. Bladder cancer is confirmed. Will schedule an appointment to have the inside of my bladder scraped in early June.
May 28, 2014: Pre-op meeting. Gave PA a description of carcinoid crisis and the protocols to prevent or treat it. She promised that anesthesiologist would have information early.
June 4, 2014: Had the bladder cancer procedure. Four tumors removed. A stent was placed in a duct to the left kidney. Anesthesiologist acted on the carcinoid crisis information and all was well on that front. A lot of pain right now.
June 10, 2014: Bladder cancer labs show low grade non-aggressive but likely recurring cancer unrelated to carcinoid.
August 14, 2014: Blood tests for the Carcinoid Tumor markers indicate no progression.
August 22, 2014: In hospital ER in the mountains of Colorado, cannot urinate, painful. Catheterized and told to see me doctor in three days.
August 25, 2014: Doctor removes catheter and all seems well.
August 26, 2014: 7:00 AM extreme pain and in hospital ER. Another catheter. Urologist says I will probably need prostate surgery.
September 8, 2014: Good News! CT Scan shows that Carcinoid Tumor is stable.
September 10, 2014: Foley catheter is removed and I can now catheterize myself as needed. What a relief! No schedule for prostate surgery yet.
September 16, 2014: More Good News! No new bladder cancer was found today. I do not need to catheterize right now because things are working correctly currently. No prostate surgery because of above news.
December 10, 2014: Cystoscopy today. Bladder cancer has not re-appeared. Woop! Woop!!! Octreoscans in progress; won’t know verdict for a week or so.
December 15, 2014: Octreoscan results. No change, no progression.
December 22, 2014: CT scan of kidneys/ureters result. No problems!
April 23, 2015: Quarterly blood tests: Seratonin, Chromogranin A, Gastrin, Liver Panel, etc.: No change, no progression.
May 18, 2015: CT Scan
May 27, 2015: Pacemaker implant, possibly needed because of carcinoid.
May 29, 2015: CT scan results. A new lesion on my liver.
June 22, 2015: Urology check up, bladder cancer has returned. Blood test, high blood sugar, possibly from Sandostatin.
July 29, 2015: Bladder Surgery. All is well so far.
September 30, 2015: Bladder Cancer check-up. All clear.
November 17, 2015: Blood tests and CT scan indicate that NETs cancer is stable, not progressing.
December 15, 2015: Bladder Cancer check-up. Cancer has re-appeared.
April 8, 2016: Cancer scraped out urinary bladder. All went well. We are considering immunology treatment to try to prevent recurrence.
April 13, 2016: Bladder cancer biopsy still indicates non-invasive lower risk type of cancer. We have decided to start immunology treatment in June.
May 20, 2016: Day surgery today. Dr. Liu removed a mass from my left breast which we feared might be more cancer. He says that he is sure that it is just a lipoma (lump of fat). Good news for once.
June 3, 2016: Biopsy confirmed that lump in breast was angiolipoma. BCG immunization treatment started today.
August 24, 2016: Cystoscopy shows that bladder cancer has returned. Investigating avenues of treatment.
September 13, 2016: Cancer removed from bladder as has been done before. Still trying to find a way to stop recurrence.
October 27, 2016: Tests and scans NETs – no progression. However very slow cancer of thyroid diagnosed. Decision to watch and wait.
January 16, 2017: Having had severe back pain (severe stenosis) for about nine months, get spinal steroid injections.
January 19, 2017: Now almost pain free for three days!
March 24, 2017: Cystoscopy today shows no recurrence of bladder cancer! First time in 3 years I have gone that long with recurrence.
April 6, 2017: Another spinal injection. The old one had worn off, leaving a lot of pain.
May 4, 2017: Return from 12 day trip to Amsterdam, Netherlands. No carcinoid problems at all. Spinal sciatica was bad part of the time. The injection did not hold well.
August 15, 2018: Bladder cancer exam. It is not there!
August 30, 2018: GA-68 PET/CT scan shows “mild progression”, new tumors, slightly bigger old tumors. Now on the wait list for PRRT, January or February.
March 1, 2019: First PRRT treatment.
April 3, 2019: Cystoscopy shows no bladder cancer recurrence. Three years free of it!
May 10, 2019: Second PRRT treatment.
July 5, 2019: Third PRRT treatment.
August 30, 2019: Fourth and final PRRT treatment.
Copyright secured by Digiprove © 2012-2019 Cyril Ball
I don’t know if this is still a current blog but I’m currently being tested for carcinoid syndrome. About 4 months ago I started sweating profusely and clammy sticky cool skin. It happens when I move just a little or drink coffee. I can’t even do dishes or vacuum. I’m now flushing when I have a glass of wine. Also having a host of other problems with my bladder, constant uti, and heart problems. Does this sound familiar to anyone?
Flushing with alcohol, sweating, fatigue and maybe heart problems can be associated with Carcinoid Syndrome.
I do not think the other symptoms are usually listed with neuroendocrine, but getting tested is a good idea.
Have the best possible outcome!
Cy
Yes! I’m in bed with bright red/purple flushing! I’ve been dealing with this too long. Can’t do 5HIAA 24 hour urine test because I’ve been on prednisone after mass removed in my neck. Still awaiting pathology on it. I’m a mess, scared, and don’t know what else I can be doing. Seems my endocrinologist is putting all the eggs in the 5HIAA test. Isn’t there other ways to find Carcinoid when I’m in a flushing event? Anyone with answers can email me at ladyrnt@yahoo.com. Please put Carcinoid in subject line. Thank you and God bless!
Sorry for your issues.
For me the 5HIAA gave no definitive results even though I already had tumor biopsies showing NETs!
Tests that did work:
Serotonin blood test
chromogranin A (CgA) blood test.
CT scans revealed tumors in my liver.
MRI scans are good for liver tumors.
Gallium 68 PET/CT scan is the best imaging for tumors and if tumors show up in that scan, they are almost guaranteed to be NETs.
I have been under treatment for liver problem for sometime. This article has helped me to gain a lot of moral strength. Thanks for sharing this.
Just saw your story Cy. Similar to mine. I have been treated since my dx in December 2010 while taking a deposition at LAX. I had been treated for gerd for about 5 years at that time. I have had two surgeries, the first taking out 13 tumors sitting on the outside of my small intestine which was resectioned , with the loss of about 33 inches of it. The second surgery was in 2018 where one tumor was removed above my liver. Like you I have spots on my liver, but it has also settled in my hip. I anticipate starting the injections shortly and will opt to have my gall bladder removed incident to an exploratory surgery seeking more tumors. Like you I can pretty much tell if I am growing more tumors, aren’t we all, and feel more comfortable having them removed even thoughI got a bad infection after my first surgery requiring readmission and still another surgery to clear up the infection. Like you I recommend vigilance and aggressive follow up if any midgut acid like symptoms persist. Your primary is likely never to have seen a net or have any experience in treating or dx them. I have excellent care at Fred Hutch/Seattle Cancer care alliance. M in Washington State
Glad you are moving forward with your life and receiving good care. Thanks for the comment.
Thanks Cy
You have provided a great service to a lot of people with the information on this blog. I feel much more optimistic after reading it
Hi
I just completed the 5hiaa urine test and am concerned that I possibly messed up by collecting an extra hour.
Started 6:14 am discarding my urine. Began collection at 9:04 am and finished at 7:15 the following day.
I also read where I should not take BP Meds during prep so I did not take my metroprolil and lisinipril for 4 days, prep and collection periods, of the procedure. I did continue with my low dose aspirin throughout the prep and collection periods. My symptoms, for the last 2 years, facial flushing, mild in the beginning was attributed to possibke rosacea, the flushing became more intense, almost daily this past year. Recurring eye irritations in one eye for the last two years, looked like pink eye, many Dr visits and it was not pink eye. Occasional swollen lymph gland in neck on the same side as eye. Frequent sinus infections and irritable bowel D.
Curiously, in the past 4 years, I did wake up in the middle of the night about 3 times convulsing with chills.
Recently had a colonoscopy with one 1 cent benign adenoid removed from the ascending colon. By going over one hour with the urine test, I am curious if I would get a false result. Also, I did drink a lot more water during the collection period.
Thanks for any input.
I am no expert on this. But, it seems to me that an extra hour should not make any difference.
It would be appropriate to talk to your oncologist or the oncology nurse about it, if you are worried.
My husband was diagnosed with NET metastatic from duodenum to liver and has a few lesions, two being larger (7cm and 3.6cm). It’s been just over 2 years at this point. He’s on Sandostatin 40mg every 4 weeks. He still has a lot of stomach acid, some diarrhea and a lot of night sweats. His night sweats are from his shoulders up and soak his pillow. His oncologist is telling him that carcinoid syndrome related night sweats are whole body. What did you experience?
My night sweats are from shoulders up. They have been since I was diagnosed. After liver surgery in 2013, The intensity of the sweats has diminished but I still have them most nights. I also get very cold most days from mid-afternoon to about 8:00 pm. I am on 30mg Sando.
My sweats are from shoulders up. Others that I have seen mention shoulders up.
Just a question on nets.. They just removed his spleen , 3 inches of pancreas and a walnut size tumor. Said not In organ but tissue around the pancreas. Told him it was invasive neuroendocrine cancer. Kind of understand and can find out what net mean, but do they mean by invasive. He has no clue what they mean . Thanks and wow what journeys. I had lung ca 19 years ago but nothing like some other. Wish everyone well
God Bless You . Your story has helped my husband and I a lot he was told recently he has Carciniod Cancer they found it when it was at stage 4 did a Y 90 procedure one doctor said it was working his Oncologist said it wasn’t started Chemo Meds (pills) no mention of any kind of Surgery to remove and tumors from the liver . I was my husband to have to best possible chance at beating this (which I know it isn’t curable ) however be able to live his life to the fullest until the good Lord calls him home , give him every chance of a longer survival . Rate . Your story is an inspiration and your a fighter thank you for sharing , God Bless you ever so . You will be in our prayers daily .
Thank you Lisa,
I know people for whom chemo worked. If you have any doubts about the treatment, get a second opinion from a neuroendocrine expert if you can.
May you and your husband have the best possible outcomes.
Hi Cy
Thanks for sharing everything you’ve gone through. I’ve just turned 45 and was told rougly 6 months ago that I’ve got neuroendocrime carcinoma. They found a large mass on my right side beside my kidney and one in the chest and another in my neck. Still don’t know where the primary is. Went through chemo and am now on a 4 weekly sandostatin injection. Going in on Thursday for gallbladder removal. Things don’t get easier but when I read everything you’ve written it helps and explains a lot more.
God bless
Pat
Cy,
I want to thank you for your blog. I have contemplated documenting my experience as well. I hope you don’t mind me sharing my experience. It’s not easy finding someone who may understand what it’s like to be diagnosed with Carcinoid Cancer.
At 45 I was diagnosed with a well-differentiated low-grade carcinoid tumor of the duodenum which was about 2cm+. The way that this was found was via an endoscopic procedure that was being done to determine a strange pain that I had experienced. Prior to this I had been on Nexium for a few years. I had to increase the dosage of the Nexium due to stomach pain that I would experience when stressed. By the time I had the endoscopy, my primary care physician was contemplating bumping my dosage up to 3 times a day.
I live in a large metropolitan area, so when I was given the diagnosis, I wanted to go to the best cancer hospital in my area. I had to hope thru some hoops to even get an appointment. Although there was a biopsy that tested positive as a Carcinoid Tumor, they insisted that I have a CT Scan as well. The CT Scan showed nothing.
I did however get in, and then they did the same tests again, which showed absolutely nothing. They didn’t see anything till they did their own endoscopic procedure. They tried to remove it using water pressure to lift it up, and cut it away, but that did not work as the tumor would not lift from the wall of the duodenum. They then did an Octreoscan that took 2 days to complete. It showed up on the scan. I did other types of lab work like CA Antigen 125, Chromogranin A, 5-HIAA. Once I stopped taking the Nexium, all of the lab work came back within normal range.
Since I had never had anything this serious, I was very confused as to why they would want to test and retest when the results were the same. And I was really confused that the Tumor would not show up on a CT Scan, even when dye was used.
I was told my only option was to have surgery. They removed almost ½ of my stomach, and as much of my duodenum they could without impacting my liver. They performed a Duodenectomy, and BII gastroenterostomy. I won’t get into my hospital stay, or talk about going without food or drink for 2 weeks. Or the subsequent 2 months of daily vomiting after I ate or drank.
The things that bothers me the most, are; I’m doing follow-up testing, that all show normal. (I shouldn’t be bother by that.) But they are running the same tests as before that showed normal when I had the tumor. I keep being told that if it comes back, it will come back in my liver. Which I know isn’t true. My Dr won’t explain anything, when I was in the hospital, I asked why they were doing something and he spouted out the garbage that it takes 4 year to get thru Med School, he can’t explain all that in 5 mins (Jerk). I was told that Nexium’ or better stated all PPIs, have been shown to cause Carcinoid Tumors in Lab Rats, but they are not pursuing analysis as to if it causes them in Humans. (You would think that would be important.) And, when someone asks me how I’m doing, and they say they want the truth, they really don’t. They want to hear that I’m fine, and all’s good. That I don’t have any long lasting effects of the treatment. It’s not true. Most of the things I love to eat, I can’t anymore. I go out to eat, and I’m lucky to find 1 thing on the menu that isn’t greasy, fatty, or spicy. Even when I avoid that, at time I still wake up in a rush at night with vomit in my throat, and sometimes I spend a couple of hours coughing it out of my lungs. When I say something to my doctor, his comment is, lose 5 pounds. Even when I lose 5 pounds, it’s lose another 5 pounds. When I see my other doctors about a non-related issue, as soon as they see Carcinoid Cancer, they blame everything on that, and tell me to go back to my Cancer Dr.
With all that said, my trust level is zero when it comes to their test results. Hopefully you’ll understand, for obvious reasons.
Honestly, is my experience unique, or is this how all Cancer Patients/Survivors are treated?
Not all cancer patients are treated this way, but carcinoid cancer patients are treated this way too often. Even though the clinic you are going to is a “cancer hospital” , they often lack a lot of knowledge about NETs. My first advice would be to see the Carcinoid Cancer Foundation’s website https://www.carcinoid.org/ and use their “Find a Doctor” to find a carcinoid specialist near you. Then go see that specialist, at least for a second opinion.
We should not be treated the way you were treated and we should not allow doctors to treat us that way. In my opinion, they should be fired and should be made to understand why. It took me a few years but I finally realized that my HMO doctors really didn’t understand the disease or the treatments, even though they said they had treated several cases.
It is true that PPIs have been shown to cause NET tumors to grow in animals. I think that the studies showed that existing tumors grew bigger not necessarily that new tumors were created. Either way, most specialists would advise you to stay away from PPIs except for a few weeks in an emergency. I take rantidine (Zantac) when instead when I need it.
A hard thing to grasp and live with when we have NETs is that there is absolutely no 100% reliable test for the disease except biopsy of a tumor (even that is a bit subjective on the part of the lab person). Many doctors and clinics do not seem to understand that. The 5-HIAA is considered most reliable but it is negative for me and of course, I have the surgeries and biopsies to prove that I have NETs!
I co-lead the Colorado Carcinoid Cancer Support Group http://cccsg.net/ and there are plenty of horror stories like yours.
I hope you find the treatment you need,
Cy
Hi Cy,
Thanks for your reply. At least I don’t feel as crazy as before. I went to the Carcinoid Cancer Foundation’s website as you suggested, my Dr is listed there. I just haven’t seen him since before I had my surgery. I’ve only seen the surgeon since then. I looked at the other Doctors on the list, and they are in the same facility. I don’t know that the plan would change if I spoke with another Dr or if I would even be allowed to speak with them since they are affiliated, so I sent him a message. We shall see. My surgeon left for greener pastures, so I have a new Doctor in his place. We shall see about that as well.
At this point, I just want my all clear so I can buy a life insurance policy. I’m not giving up, but the whole reason I even put up with this go-nowhere testing is so I can correct my mistake prior to 5 years ago and get a life insurance policy that will protect my family’s finances. I don’t think that is too much to ask.
Cheryl
I would like to thank you for keeping a public journal throughout your journey. Reading about the experience of those with carcinoid tumors, especially regarding physical and psychological symptoms, has helped me in so many ways. It gives me hope.
I am only 26 and appear very healthy, but have been having serious health problems this past year, including constant nausea (literally 24/7), abdominal discomfort, diarrhea, untriggered panic attacks in the afternoon, major blood pressure and temperature fluctuations, and rapid unintended weight loss. Because of my age and healthy-looking body, every doctor I’ve seen has tried to diagnose my symptoms as an anxiety disorder. I have been pushing back hard because I know that this is something physical. The SSRIs made me violently ill, which is why I started research on serotonin and the maladies which affect its levels. All other tests have come back within normal range, but I’m waiting on the results for the 5-HIAA test now. (I had to practically beg my doctor to order the test for me.)
I’m a pretty driven person, but being told over and over again that this is all in my head can break a spirit. It’s stories like yours which help me keep looking for answers. Thank you.
A person with an undiagnosed disease has to be strong and driven. You are and must be your own best advocate. My 5-HIAA came back negative even though I already had a positive biopsy of my liver tumors. If you have not had them yet, blood tests of seratonin and chromogranin A should be done. I hope they find the right diagnosis for you (it might not be NETS).
May you have the best possible outcome,
Cy
Hi Rachel
That sounds so similar to my own story and symptoms with my undiagnosed illness.
I randomly found that antihistamines helped dramatically – if you would like to try taking a cetirizine antihistamine a couple of times a day and let me know if it changes anything.
Personally, I’ve had most scans and tests, and they have been fine, to my relief, but I suspect a bacterial issue in my gut triggering a slow allergic response that has reached a particular level to trigger everything.
Hope to hear from you!
Carcinoid, bladder cancer, lipoma … has the doctor tested you for multiple endocrine neoplasia (MEN)? It is a genetic condition which commonly involves those types of tumor. If you have MEN, a lot of this starts to make sense, and the docs will know what to look for.
Thanks Miilanna, Dr. Liu does know to look for MEN.
Cy-what a long road. My thoughts are with you. I test positive for CgA and serotonin. Have all symptoms but otreoscan unable to find primary. Also have lupus/sjogrens-terrible ulcers/nausea. Hard to keep going sometimes.
It’s a waiting game.
Good luck
If you can, get a blood test for gastrin. I had an ulcer and constant burning stomach. It turned out that my largest tumor in the liver was generating a lot of gastrin. As soon as the tumor was gone the stomach problems disappeared. Have the best possible outcome! Cy
I’m only 35 and have a one year old. I’m really scared. I’ve already had my gall bladder out 3.5 years ago and Appendix 3 months ago.
NETs is usually slow growing. They can test the tumor that was removed to determine if it is slow (well-differentiated) or not. As you read you will find that, with treatment (tumor removal, the injections that I mentioned), people can often live more than 20 years and have productive lives. New treatments are being developed. You probably have a lot of time yet, but you need to be vigilant, learn all you can and if possible see doctors who are specialists in the disease. For lists of doctors see http://www.carcinoid.org/, they have a doctor list by state.
Hi, I’ve been diagnosed with a carcinoid tumour in my small intestine. Found via colonoscopy biopsy as I have chronic diarrhoea for 6 months… What do I do?
First go to http://www.carcinoid.org/ the carcinoid cancer webpage and read all you can. There is also a Facebook group called NETS School. Join that to learn more. Your doctor should be looking at Sandostatin or Lanreotide injections to help control the diarrhea. You should also have scans to make sure that it has not already spread to other organs (liver especially). MRI, CT scan, Galium-68 scan, octreoscan are all tools used to try to locate metastases. Have the best possible outcomes.
Dear cy, thank you for sharing. I am
A 28 year old woman diagnosed with rectal carcinoid cancer April 2016 and removed half of my rectum along with some 14 lymph nodes finding 2 infected. I am told to wait and watch and is scheduled for a follow up pet in September. just want to tell you your blog makes me feel slightly better about my uncertain future and encourages me to face it with a brave face. Thank you. Once I get to know more about what I am dealing with i hope I can be like you and share my experience. Thank you.
Eunice,
It is especially important for a young person to realize that this NETs is a disease that you can live with for a long time, with proper treatment. New treatments are being developed all the time.
Carcinoid.org has a list of doctors who are specialists. There are several specialists in MA. You really need the specialist and can then coordinate with all your other doctors. If your other doctors won’t listen, change to a different one.
Thank you to all who offer their feedback on this site. I’m in the unique position of just “failing” my 24 hour urine test and I’m heading for my first otreoscan. I have a lot of pressure in my chest and left abdomen and tremendous gas. I don’t have flushing or chronic diarrhea. I have tremendous night sweats and extreme long-term fatigue. My PCP continually suggested I have anxiety, and since this test result, they give me a lot more respect for sure. I am only 41 years old and have two young children. I have a couple of questions if anyone has the time to address them.
1. Are these urine tests ever inaccurate? What leads to inaccurate tests?
2. How do I get in for treatment at the best doctors in the world if needed? I am close to NYC and Boston by subway. What does the process look like?
3. How do you guys recommend that one tackle this potential challenge? I’m so inspired by your strength and willingness to share.
Anyways, I wish you all the very best. Take care.
Jason
Yes, the tests all can fail. The most reliable diagnosis is biopsy of a tumor. The urine test is sensitive to the foods y0u eat and the medications that you take. Did you get and follow a list of things to avoid? The urine test was negative for me. You will probably need a blood serotonin, chronograph A, and gastrin set of blood test.
Learn all you can. Read from most of the websites on my list to right here. There are facebook support groups if you need or want support or experienced knowledge. Try “Carcinoid Coffee Cafe”, Dr. Liz’s Zebras. There are support groups in the NY area. Look on http://www.carcinoid.org to find them. Face to face talking with another carcinoid was important to me when I was in the early days. For me, soOe practice of mindfulness or meditation was/is important.
Jason, first of all, be optimistic! My 29 year old daughter with two young children had a carcinoid tumor of the appendix but it was removed, as were lymph nodes and part of the intestine as a precaution. There was no cancer in the lymph nodes or intestine! Luckily, carcinoids are slow growing and her cancer seems to be gone three years out. So have faith in the slow growth part! The oldest and best carcinoid dr in the world is in NYC: Dr. Richard Werner! He has done this longer than anyone and is up in years. Only downside is he doesn’t take insurance, but his fellow dr michelle kim, a gastro carcinoid dr, does take insurance and they work together somewhat. If money isn’t an issue, I would go to Dr. Werner! He is very open to email queries and actually answers his own phone! what dr does THAT anymore?? So be of good cheer-there is surgery, medicine, etc. that works. You need to get the bible of carcinoids, put out by innerscience i believe. they will send it free! I will look up the name of it and get back on tomorrow! God bless!!!
Thank you for sharing your story. I believe you are a strong person just the way you write these experiences without showing anger or frustration…you highlight positivity.
Prayers for you and your family.
Thank you, I believe years of meditation and work with another group to learn compassion for both myself and others have made it possible to deal with all of the health issues. All of us have bad days. We must be able to let it go and experience the next day.
Thank you for sharing your story. Just diagnosed 5/17/16 with primary in small intestine and metastasis into the liver so it is nice to hear maintenance with a bumpy road (but a continuing road) after 5+ years. God bless and continue the good fight
Hi Cy, I was diagnosed in March 2016. Primary unknown with1 met to liver. I will be undergoing full blood tests and 24hr urine as well as triphasic scan & one other scan next week with Ga68 upon insurance approval. I’ve had a CT, MRI and PET scans, endo to pancreas that came out inconclusive. You had mentioned that low B12 signifies a gastric net. Does gastric net include the pancreas? I developed B12 In the last6 mos or so. Still nervous regarding where this primary is. Thank you, lori
Lori, sorry but I do not remember a mention of B12 other than people who have the diarrhea as part of the symptoms may be low in B12 and other vitamins. Also, mid-gut NETS may prevent proper absorbtion of vitamins. Since you have mets in your liver, I’m guessing that you could have the diarrhea which could be the problem.
Hi again Cy,
I forgot to mention that before all of this started (except for the night sweats; they are going on over five years), I had a weird itchy rash all over my torso, back, arms, and legs that lingered on for about two months. I ended up taking Zyrtec, but it took about another month for it to go away. The doctor called it dermatographica – which literally means skin writing. I could “draw” on my skin with my finger and the histamine reaction would cause my skin to have a reaction which would leave behind red lines.
I never was able to determine what I was having an allergic reaction to, as I hadn’t eaten anything different or come into contact with anything out of the ordinary.
Just thought I would add that in case it helps glue any puzzle pieces together.
Thank you,
Carla
You certainly have had a lot of issues to deal with. It does seem to me to be multiple conditions which will make it even harder to diagnose.
May you have the best possible outcome!
Cy
Hi Cy,
Thank you for responding.
The flushing was dry.
I haven’t had any blood tests for gastrin, serotonin, or chromogranin A. The acid reflux is a new thing for me, and even the Prilosec and Zantac can’t keep the acid level in check. I didn’t mention that I am a vegetarian and eat very healthy foods -lots of veggies, seeds, nuts, and grains. I eat eggs, but I gave up dairy because I thought it might be making my stomach worse. I can’t really say that eliminating dairy has helped, but now I’m used to not eating it. I also take probiotics.
I have not had an MRI or CT of my liver. I’ve only had an upper endoscopy, which didn’t find anything abnormal, like a hernia or ulcer.
I don’t think it’s sciatica, since I remember that pinching nerve pain from being pregnant (I have three kids). This pain starts in my groin on the front, and shoots down the front of my thigh. I also have some bloating and feelings of pressure in my pelvic area (hence the ultrasound on my ovary). I have a feeling that something in my pelvic cavity is pushing on the nerve. Or maybe the lymph nodes in my groin are starting to swell. I don’t feel any bumps from the outside though.
I also do not have diarrhea. But I’m not constipated either. Something must be going on with my “multiple loops of fluid filled bowels.” I’m going to get an appointment to see the GI doc again.
One last thing I forgot to mention is that I’ve lost 15 pounds in the last 8 months, and I wasn’t very big to begin with. The weight loss is about 12% of my former weight.
I know that my body is trying to tell me something, but I just haven’t found the right translator (doctor) yet.
Thanks again for your suggestions and ideas on this.
Carla
Hi there Cy,
First, I’d like to say that I hope this finds you well. Second, I’d like to say I have read every comment on your site. And next I will say that I am at the end of my rope!
I’ve been suffering with night sweats for the past five years, starting when I was 37. I wasn’t menopausal, and the doctors could never give me a reason, or a solution for them. It’s miserable being soaked every night.
In the past year, I’ve developed severe acid reflux, but the silent type. The doctors were trying to figure out why I had sleep apnea (I was waking up choking at night) but none of the risk factors, such as being male, overweight, having a thick neck, etc. Finally, I saw an ENT who realized my pharynx/larynx was all burned from stomach acid. He put me on Prilosec and Zantac. Even after taking the maximum dose for three months, I was unable to keep the acid away. The only thing that helps a little bit, is making sure I stop eating by about 4 pm in the afternoon. And even this doesn’t help sometimes.
Last July (2015), I began getting flushing in my face and neck. This went on for about 2 months. I don’t recall if my skin turned red, but mostly because I wasn’t looking in a mirror, just laying down with an ice pack trying to get the heat wave to go away. I don’t know for sure if it’s related, but the flushing started when I tried black cohosh for the first time (thinking it might help with the night sweats). But I was wrong, and after four days, I stopped taking it. Yet the facial and neck flushing continued. Then it mysteriously disappeared one day.
Along with this, and since then, I’ve developed horrible abdominal and pelvic pains. I recently had an gynecological ultrasound (since the pain was focused over my right ovary. I only have one ovary left, as I had a hysterectomy in 2013 because of fibroids. Also found out after surgery that I have endometriosis). The US tech noted that I have functional (read:normal) ovarian cysts along with multiple loops of fluid filled bowels (read:abnormal) but the GYN couldn’t give me a reason/cause. She wants me to see a gastroenterologist. I haven’t been able to get there yet.
One other thing that I’m having (for about the last three months) is pain in my groin that starts at the crease and shoots down my leg, but only on the right side.
Sorry for the long story, but I am just wondering if you think (btw, I know you’re not a doctor) my combination of symptoms could be related to carcinoid.
One other weird thing is that after an especially bad night sweat, I notice that my urine is super cloudy. I mentioned this to the GYN, and she said it’s just because it’s concentrated. But I know the difference and it’s NOT concentrated. There is definitely something in there that probably shouldn’t be. And it’s not due to a urinary tract infection – there wasn’t any bacteria.
If you can shed any light on my quandary, I would must appreciative,
Carla
Each carcinoid patient is different. Many symptoms could be carcinoid, ether Carcinoid flushing is dry, not wet. You did not mention whether your flushes were dry. Night sweats are caused by many cancers and other conditions.
As you read, my acid stomach was not acid reflux in fact, I never had anything but a very burning sensation in the stomach and bleeding ulcer. This was because a carcinoid tumor in my liver was generating a high level of gastrin. Have you had blood tests for gastrin, serotonin and chromogranin A? Have you had a CT scan or MRI of your liver?
The pain from groin to leg sounds like sciatica. (Do you have back pain?) I have that, but I know a very few carcinoid patients who have carcinoid tumors on their spine which might cause that.
All of this is not very specific, but what i am trying to say is we cannot know unless tumors are found and biopsied. It NETs but without blood tests and scans and biopsies no one can tell. You could have neuroendocrine cancer. I would say that if you do, you also have other conditions.
May you have the best possible outcome,
Cy
Hello Cy,
Hats off to you, you have indeed been through a lot. Wishing you good health in the new year.
I was diagnosed with a carcinoid tumor of the mid gut in 2010 which had metastasized to the mesentry. I decided to have my investigations and treatment done in Singapore because of the availability of the Gallium Dotate 68 Pet scan which lights up most Neuro endocrine tumors like a Christmas tree compared to the older technology of octretide scans. This helped in pinpointing the location and size of primary and the metastasis, which were surgically removed. Since then, I travel to Singapore twice a year, even though it is rather inconvenient, for my Gallium Scans. Touch wood, so far I am in the clear.
I would suggest, that any one suspected with a nueroendocrine tumor must have a gallium scan as a part of their investigations. It is now available in many hospitals in the US and UK. Germany, Austria, the Netherlands and Italy and Singapore are well advanced in this field. Please note that many oncologist are still not familiar with this scan and rely on more commonly available octretide scan. This could result in missing the ‘elusive primary’, when there are better chances of catching it in Gallium scan.
Thanks Farid,
We are likely to get the GA scan in Colorado in 2016. When that arrives, I will definitely be in line for it.
I hope you continue well.
I just wanted to reply to you. I enjoyed your music sounded very Scottish to me and as I am a Scot what would you expect. My daughter is also called Laurie so I feel a connection there. It would be great to correspond. Hang in there. Your the salt of the earth. Cheers Ian
Thanks Ian, you should also try this blog by a carcinoid sufferer in England: https://ronnyallan.wordpress.com
My son Derek teaches philosophy at St. Andrew’s , so we visit Scotland when we can.
I know diagnosis is very difficult and it could be many different or several different diseases. I wish you the best possible outcome in your journey.
Cy
Hi Cy. Thanks for your speedy reply. What a small world. Was external examiner for an MA at Dundee University Art- Philosophy course. Ask your son if he knows Nick Davey. Best wishes Ian. thanks for the website
Hi I am living in London and just stumbled on this website. I have been depressed in the past and have been told that my recent symptoms are purely psychosomatic and another recurrence of depression. I do not believe that as my symptoms are so typical of a carcinoid tumor. I am pushing for further tests but if the initial test prove negative, it makes it very difficult to get a doctor to agree to more. I feel as though I’m between a rock and a hard place, getting my situation to be taken seriously. Even my partner is beginning to doubt my sanity.
I will push on with tests despite everything. I hope this echoes with someone out there as I feel so lonely I this. Very best wishes to you all. Ian
Hi Cy. I too have been diagnosed at an “incidental” finding with right middle lung lobe carcinoid tumour, I had the pet scans done and they also found 2 liver lesions.. I since had a multi phase liver scan which was indeterminate .. so now my oncologist has ordered the octreotide test and 24 hr urines and hiaa tests and other blood tests. I am having VATS surgery for the middle lung removal in September .. I have to wait because I have to finish my breast cancer radiation first, I have dcis stage 1a without lymph node involvement.. thank goodness but the oncologists say that it is totally separate from the carcinoid. I have only been going through this since May 2015 and am weary from all the testing and procedures already. I too am at Kaiser San Diego and I dont think there is a carcinoid specialist within Kaiser in southern california . I dont beleive Kaiser would cover an outside physician??? I appreciate your story and wish you well on your journey too.
Hi Sharon,
Having multiple cancers is even worse than having one, right? It sometimes feels like you can’t get a break. I hope that things progress well for you.
As far as I know, Kaiser has no specialist in carcinoid anywhere in their system. It is very advisable to get a consultation or second opinion from a recognized specialist. Thus far, I have to spend my own money, but it’s worth it.
May you have the best possible outcomes,
Cy
Hi Cy, now for the continuing saga, I had the chromoganin test which was less than 5… negative.. and the octreoscan did not show uptake in my liver or my lungs .. even though my lung biopsy diagnosed carcinoid!!! I dont understand how it could not show uptake .. well still waiting to hear what the oncologist has to say about test results … so frustrating . have you ever heard of an octreoscan not showing uptake for a carcinoid? and now I still have no answers for what the liver lesions are ???? thanks for listening ~Sharon Simsay
Sharon, Actually no uptake means your tumors don’t have enough of the type of receptors required to bind to octreotide which is used in an octreoscan to carry the radioactive element to the tumors. This is not uncommon. In some patients, none of their tumors have the receptors, in others, only some tumors have receptors. When this occurs, sometimes an MIBG scan can work to find and identify tumors. Nothing except biopsy will work all the time on all patients. Even biopsy can be subjectively interpreted in the lab.
My liver tumors were identified as carcinoid by a needle biopsy. A radiologist puts you in a ct scanner and starts pushing a needle toward the liver, scans and changes direction toward the tumor, scans, and changes direction over and over until the needle is in the tumor and takes a biopsy that the lab can analyse. This is uncomfortable, but not as painful as it sounds. There may be some lower size limit on the tumors.
May you have the best possible outcome,
Cy
Hi. I just had a lower left lobe lobectomy at the end of April for a carcinoid tumor that was the size of a marble. I had a history of benign lung nodules (since 2007)…but nothing else. There was no cancer on either side of my family (mother or father). I am the first to get “cancer” (carcinoid tumor) at age 58. I am female. The pulmonologist said that if there was a cancer to “get” …carcinoid is the one because it is generally sluggish and slow growing. I had no symptoms from what I have seen here reading all these posts. I didn’t have the “flush”…I didn’t have the sweats…I didn’t have the tachycardia…what I had were a handful of incidents of seeing a little blood in my sputum since last winter. After my lobectomy, the pathology report showed no involvement of the lymph nodes that were taken. So I am cancer free. I was disturbed to read Cy’s comments about how carcinoid tumors keep coming back, etc.—but I was also disturbed by my doctor’s inability to tell me how to “avoid” this happening to me again (since it is hormone-driven). For me personally, I am grateful everything is “over” for now; I had my first bout of bad bronchitis a few weeks ago and (contrary to what everyone else thought)…the doctor said that I didn’t get it “worse” because I have half of my left lung gone. I just got sick…and required a couple rounds of antibiotics and a 10-day dose of prednisone. We who are survivors need to be grateful; to me…I consider this whole deal I went through a miracle…because it could have been “worse” given where it could have showed up and would be much more complicated and invasive to remove. So—I am thankful. God be with each of you. Thanks. MD
Hi everyone. Just over a year ago I developed strange red patches over me, that when looked at closely, were dotted with little pinprink blood dots. It cleared up after a month, but then I noticed a change to my heart beat – a little faster, but more insistent. I had started to feel a little odd, until one day I leaned forward at my desk and experienced a flush, like a panic attack. Soon after this I got nightsweats and then it all went crazy. I got a constant feeling of anxiety, confusion, muscle twitches, many panic attacks, loss of appetite, sinus pain. Doctors had no ideas, and it was getting worse. I was looking for something to help with the insomia so I went and got some antihistamine-based sleeping tablets. Not only did I get some sleep, but over the course of 2-3 weeks nearly all my other symptoms disappeared or reduced dramatically, although this required a much higher dosage than I’m happy with. Currently taking 2 benadryl at night and 4 cetirizine during the day, and this just about holds things in check.
I’m now thinking that I could have a histamine-producing NET. I’ve had a massively bloated area around my belly for 4 years, with occasional diahorrea after big meals or with wearing tight trousers. But recently my heartburn /indigestion is absolutely awful. I’ve had catecholamine and 5HIAA urine, and ceoliac tests, and a CT scan of my abdomen, but nothing showed apart from a small hernia near my bellybutton.
I can find no other illness that can match my symptoms, but when i lie on my sides at night i can feel a rush of chemicals into my body, which the antihistamines do a good job of negating the effects of. I’m in Northern Ireland, and basically my own NHS GP has given up on me. The most recent referral to an endocrine consultant was for the urine tests and hormone blood panel which all came back negative and that’s were he has left it. My CT scan last week was with contrast but nothing. I would have expected at least something with the heartburn and the flushing when my belly area / sides are compressed. Any thing I’m missing? Seems like the only answer is that I have an unusual NET as histamine is rarely mentioned. I’m a 35 yo male.
Nigel, I am not a doctor but I will tell you that my own carcinoid mets on my liver generated gastrin which caused me extreme acid stomach for about 7 years. When my largest tumor was removed, the acid stomach disappeared. There is a blood test for gastrin.
Otherwise, some of these symptoms do not sound like carcinoid. I suppose that it might be pancreatic NETs but I don’t know.
Sorry but I have no other suggestions.
May you have the best possible outcome,
Cy
Thanks for the reply, I’ll try getting a gastrin level test. Even if it does turn out that I have a NET your blog has given me (and a lot of others it seems) hope that life can still be good.
Hi CY, thanks for all the great information. I was diagnosed about 1.5 years ago and still learning. I have been on sando for over a year and now increasing the dosage from 30 to 40 mg per month due to recently increased liver tumors. Also going for radioembolization in a few weeks.
Your blog has helped me fill in a lot of the blanks and helped to explain a lot of the symptoms i had in the past.
Hopefully your new lesion will not turn out to be anything to significant. I also had good Nov/Dec scan then a not so good one in May. Maybe we need to avoid May scans going forward!!
george
Interesting theory… May scans are bad? Ha!
A laugh helps ease the anxious thoughts.
Cy – I’m so sorry to hear about another tumor in your liver. What does the doctor plan to do? I just had surgery 3 weeks ago – primary in illeum, lymph nodes, gall bladder & multiple liver mets that took 50% of my liver. Your account of how you felt after your surgery has been really helpful to me. Thank you
My doctor wants to “wait and see”. There will be another CT scan and an octreoscan in six months, so we’ll see if it’s growing. I plan to see a specialist Dr. Eric Liu and have his help developing a plan.
Hi Cy thankyou for sharing your experience with us this is a positive factual blog. I have had the the full nine yards. I have been extremely lucky I have lived for fifteen years. With carcinoid . I have had so many scans where these so called medical experts kept on getting reports that I had cysts all over my liver. This fainting vomiting was diagnosed as Diverticulous ulcers diabetes. My liver function tests were always clear so they ignored the obvious. Eventually when it was discovered I was literally riddled with tumours fortunately not the heart lungs or kidneys. Colon midgut liver rectum. Fifty percent was removed but I still have lots of embedded tumours which cannot be removed therefore I have a tiny liver. Lots of surgery’s later. I find I am very tired low energy levels. I am on the generic of Sandostatin. Too expensive I live in South Africa where we have a sad currency. I am so pleased that you have continued to ride I ran for years but I cannot manage much exercise now due to extreme muscle spasms which can be dangerous when your out on your own. Yoga was a favourite but a problem due to all the ops I have had. Please can you recommend a exercise that could help to raise the endorphins. My oncologist is emphatic that there is to be no bending at all mostly I ignore these guys. Take what is positive from them ignore the negative. He is a fantastic guy thanks to him I am still alive. Thanks for the advice and the empathy you exude. May God hold you in the palm of his hand.
It’s great that you have made it for 15 years and are still going! I stopped bicycling because my heart problems cause unexpected dizziness. Now with a lot of back pain from a non-cancer related problem, I cannot even walk very far. Just recently, water aerobics has been suggested to me. I may try that and you might want to consider it. Thanks for the nice comments.
May we have the best possible outcomes,
Cy
My first encounter with Neuroendocrine cancer was in. 2006. ” not really cancer”
Was one physician’s response. NO follow – up ———I blame myself.
2012, New physician. ——PET/CAT scans——-biopsies. Result was Neuro/ Carcinoid
tumors in liver and pancreas. Treatment is Sandostatin injection every 28 days.
April scan shows stability at this time. I am blessed to have a wonderful onocologist
who is knowledgeable about this illness.
Thanks for sharing your story. I did get a lot of info that will help me in making the right decisions, asking the right questions and agreeing to the right treatments in the future. I was diagnosed with a CT during a routine procedure and underwent surgery by a surgeon who, today, I am sure knew very little or maybe nothing about carcinoid tumors. Just went in to remove with a post surgery diagnosis of “you can go back to your normal life after I remove the tumor. Nothing else is expected”. Ha ha ha. How wrong he was! CT was already in my liver and my life has not been the same since day one after surgery. He never did any type of scan, blood work, etc. to know my carcinoid state/condition. I was even told at some point, like many others have, “is is not cancer”.
Hopefully some day doctors will want to look for the zebra instead of avoiding it as mentioned before. Good luck in your future recovery. Again, thanks for sharing with the world. This is something every doctor and surgeon should read.
Hi brother , just want to tell you that you are becoming quite the inspiration for the others on this blog. I am very proud to be your brother and proud of the compassion and help you are giving the others. May you have the best of outcomes.
In 2003 I was removed by endoscopy a 1.5 cm carcinoid from terminal ileum, with Ki-67 <1%.
In 2005 I was removed distal iSevilla, La Puebla del Río, perra, encontrada, sin chip, sin collar.
In 2005 I was removed distal ileum
and cecum to remove a mestasis on local lympde.
In 2006 another abdominal lymph node of 0.9 cm appeared and it remains unchanged untill Today.
For 18 months treatement with Interferon + Sandostatin 60. After that only Sandostatin 60.
Light carcinoid syndrome, 2-3 diarreas per month and very mild flushing. Octreoscan & CTs always -. CgA elevated for first 5 years, after that it remains normal. 5HIIA alwsys –
From 6 months ago important carcinoid syndrome, many flushinng and diarreas per day and abdominal pain and crumbs and weighth loss.
CgA, 5HIIA, urine serotonine remain –
CT, MRI, Octreoscan –
F-DOPA PET/CT + for the abdominal lymph node, but not for liver nodes.
New treatement with Lanreotide 120 and included in Telotristrat epirate trial. It seems feeling better, but still with diarreas, flushings and abdominal pain.
Doctor think new primary NETs undiagnosed, or something very rare: diffuse hepatic infiltration by carcinoid without forming nodes.
Any opinion or discussion from you about my case would be welcome. I would appreciate it very much. Thanks.
Jose, Amazing story!
I am not a doctor, but it seems To me that you would do well to have a GA-68 scan. They are muchmuch better than octreoscans. If the disease is widespread , you might investigate PRRT. That treatment is a systemic treatment used in Europe.
I am glad you are feeling better from recent treatments.
May you have the best possible outcomes,
Cy
Thanks a lot for your kind and very helpful answer.
In my country, Spain, Ga68 PET is not available. But it is F-DOPA PET, new on NETs, and useful because it does not depend on Somatostatine receptors, but it uses the tumor metabolism and its hunger for certain substances to make its hormones.
This test was positive for my abdominal lymph node, which always was negative on ostreoscan.
But it did not show uptakes in liver. Neither dynamic Magnetic Resonance.
I will investigate on PRRT, first time I hear about it.
I feel very grateful to you.
I also have taken this 18-FDOPA CT/PET scan, Jose.
This scan shows tumor for me as well.
(I come clean in every other scan)
It is sadly offered in only one facility in the states to very few patients in a clinical trial who fit the criteria of Familial Midgut Carcinoid in Maryland.(NIH)
I do wish all NET patients would be able to have this scan available to them.
Jennifer, thanks for your information. It comforts me very much to know F-DOPA PET scan works properly for other patients. I was said it was something new and very accurate for NETs being poor on Somatostatine receptors, now I know, thanks to you, that it was true what my doctors told me about it.
Hope this scan is available for everybody as soon as possible.
My tweet @CarcinoidSpain
Do you know the possibilities of a child having carcinoid? I have been researching for some time my 10 year old daughter is having very similar symptoms including the flushing.. she gets very nauseous sometimes vomits sometimes dry heaves for long periods of time and then sleeps for several hours, and is very difficult to wake. She has lost 10 lbs in 3 months. If anyone has any ideas or answers that could help I would appreciate it. It takes so long to get drs to run tests and to understand the gravity of what is going on.
Thank you
Dawn,
Children do have carcinoid, but, it’s pretty rare.
Her symptoms are just so severe… it starts with facial flushing, then severe nausea then she sleeps for hours, complains of feeling dizzy. They first said it was constipation and she was hospitalized for 4 days came home and she got sick again. Then she had an endoscopy and colonoscopy and was clean. We are still waiting of the biopsy to come back from those But she was sick again this morning and after getting sick went back to bed and slept for a total of 14 hours since last night. She has also lost 10 lbs in 3 months. Does this sound like it could be carcinoid? everything I read focuses on the Flushing… which is always her FIRST symptom. Dr’s dismiss it by saying it’s from vomiting and I tell them her cheeks get red FIRST. I’m just frustrated because I want to help her as well as not waste time if this is what she has…. not to mention the amount of school she is missing..
Thanks
Dawn
Dawn,
I am sorry to hear that your daughter and you are suffering through this.
The symptoms sound to me more like and intestinal blockage than just carcinoid syndrome. Not many people have the severe nausea from carcinoid syndrome. They do have nausea from blockage. I hope the ER checked this thoroughly.
The problem is that it could be carcinoid but unless a biopsy proves it, the doctors won’t know for sure. They could do blood tests for seratonin, chromogranin A and maybe gastrin which might indicate something but a biopsy is the only way to know for sure.
i’m newly diagnosed, recovering from surgery for mid gut carcinoid tumor. I’m in the midst of every possible test and am sometimes feeling that I have lost my life and am a resident of this new medical life. I live in CT, near Smilow Cancer Hospital part of Yale New Haven,so there are Drs here who are knowledgeable.
Thanks for all these comments, and your blogs, Cy. They are reassuring.
You’re welcome Pat,
Please believe that you can survive and live well (albeit differently from before) with this disease.
My husband and I are so grateful for your post. God Bless You!
Hi CY,
Just read your story and was overwhelmed by your long and arduous journey, all I can offer is my deep felt respect and love for your strength and stamina, ‘keep your chin up’, is rather an understatement for what you have been through.
Why oh why do some of us get caught in the current and other sail the calm sea, there is no logic.
You Sir are an inspiration, I hope and pray that you are still coping, or even better are free from the path that life took you down, you seem like a very wonderful human being and I don’t understand why it’s always the good that seem to suffer most.
It would be very settling to hear where you are up to in your journey and I offer you my best, deepest, strongest wishes that you are safe at peace and enjoying life now,
with love and consideration
Amanda
Thanks Amanda,
There are many who are worse off than I am.
As my blogs have said I am currently stable with very little syndrome to trouble me.
We keep testing to catch it when it progresses again.
Hi. My husband has battled carcinoid for 23 yrs after being diagnosed. Has had several surgeries over the yrs. someone once said its like chasing the devil. So true. Now surgery is not an option and disease has advanced. Currently involved in clinical trial at Dana Farber. Sandostatin 60 mg every month. Hope it helps. Last 2 cat scans were stable. Good luck everyone
Glad to hear from you Chris.
I hope the Sando helps your husband. Both you and he can find love and support at:
ACOR listserv for Carcinoid
Facebook Dr. Liu’s Zebras
Facebook Carcinoid Coffee Cafe
May you have the best possible outcomes,
Cy
Thank you for the response I was an emotional wreck yesterday, I know after my initial surgery several tumors have been dormant. So the presents of a new threw me off. My oncologist is not very familiar with carcinoid, so he did not tell me this can occur.
I was diagnosed in 2010 and saw Dr. Woltering in kenner, la. Over the last 4 years I have been stable, but after my last scan 3 weeks ago a new lesion is present, can you tell me if this is normal if you are taking Sandostatn? My local oncologist is scheduling all the test, including the 5 Hiaa
Hi Dorothy,
I am presuming you mean a lesion in your liver but even elsewhere, it is entirely expected for the disease to progress. That means that existing tumors will grow and new tumors will appear.
This is true even if all known tumors are removed. Once it has metastasized to the liver or other organs there is no cure. I have read that the primary tumor generates microtumors that can live in the body for a long time and eventually start growing larger and becoming visible.
You should definitely ask Dr. Woltering about this.
So sorry that you have to endure these challenges.
May you have the best possible outcomes,
Cy
I am a 52 year old diagnosed with a carcinoid polyp in 2012. Polyp was removed during egd and followup egd’s in 2013 showed no return. This year egd revealed multiple polyps in stomach again. Endo doctor removed several polups during a subsequent egd. Endo doctor mentioned seeing a surgeon for removal of lower part of stomach or following with the end’s and removing if more are found. I have another egd scheduled for march to remove those he did not remove. I have other medical issues including diabetic, gaves syndrome, gastroparesis and am on dialysis, peritoneal at home. Endo doctor told me I also have achlorhydria,no stomach acid and this is what allowed the polyps to grow in the stomach. I don’t have symptoms other than occasional bloating, burping, feeling full and have lost significant weight in last year. I think I will look up a carcinoid specialist, my oncologist also mentioned surgery, but indicated chemo is not an effective treatment for this type of carcinoid.
Kelly,
Sorry that you are experience all of this.
You should definitely see a specialist.
Chemo usually does not work for Carcinoid.
I hope you find the best specialist who can help you thru this,
Cy
I ran across your story. I’m so sorry you had to go through all of this. I’m happy things are looking up!
My friend just got diagnosed with Bladder cancer for the 2nd time. The tumor is the size of a tennis ball and has attached itself to his prostate and colorectal. I’m so worried about him. His wife told me they have to shrink the tumor before they can do surgery. Such wonderful people, I hate cancer!
Thank you for continuing to post your updates. It’s good to know you are recovering and it gives hope to others. :))
Hi my 18 yr old son had a carcinoid tumor of the appendix when he was 16 appendix was removed he now has abdominal cramps diarrhea flushing and today I found him on the floor crying in pain with his back and arms took him to ER couldnt find anything someone told me these are symptoms of carcinoid syndrome how do make a Dr listen to you and test for this or who do you go to and do these sound like symptoms
Hi Neva Mann,
Pain in back and arms is not normally a symptom of carcinoid but when dealing with these hormones anything is possible. Abdominal cramps, diarrhea, flushing are symptoms of carcinoid syndrome and they are symptoms that I have. Often these occur when it has metastasized to the liver.
I think the best thing you can do is go to:
http://www.carcinoid.org/patient/treatment/find-a-doctor
and find a doctor on their list near you. While you are on the carcinoid.org website read all you can about the disease and testing. There are no absolute definitive tests but a place to start is blood tests for seratonin and for chromogranin A.
You would do well to download and read the booklets that I talk about here:
http://dev.cyrilfb.com/carcinoid-tumor/handbook-netscarcinoid/
I have pointed to a couple of very good booklets on the disease.
Above in a reply to Angie, I list several online support groups that may be of help to you.
I hope you find the best possible solutions,
Cy
Hi Ebby,
Sorry that you have this problem. I believe that you will find people with that version of carcinoid here:
http://www.acor.org (once there, find the carcinoid group and join.)
On Facebook, there is a group called Carcinoid Coffee Cafe. It is a private group so you just request to join. It has become my favorite support group.
Both of those groups are monitored by a doctor who is an expert in the NET disease and there are too few of those!
May you have the best possible outcome!
Cy
I was wondering if anyone has been diagnosed with goblet cell carcinoid. I was diagnosed with this October of 2013 following surgery for a ruptured appendix. I have heard that it is extremely rare. I see my oncologist every three months. Thank you – Ebby
What are your symptoms my son also hada ruptured appendix from carcinoid he has been having symptoms of carcinoid syndrome but no one has diagnosed him any info would help
Cy,
Thank you so much for all the helpful information. Your blog is definitely an inspiration. I hope I can find the strength and courage it takes to fight this disease. I just worry because it is apparently already in my liver… I already know I am going to have to travel to get treatment. My doctor said she would not recommend staying here. I am wishing everyone the best. You are all in my thoughts and prayers. Thanks again
Angie
Hi Beth,
I’m glad you found this too. You already know much from your experience. I hope there is something here to help you. My response to Angie just above May point to more info for you.
Namaste,
Cy
Am so grateful to have found this site. Carcinoid tumor was identified with removal of half of left lung in 2006. Disease metastasized to liver and pancreas,
and have been getting Sandostatin LAR injections since December 2012.
Recent hospitalization with severe abdominal pain. Weight loss of 16 lbs in
Last month.
CT scan of a week ago shows tumors are stable. Physician is very positive
but I want to learn as much as possible about Neuroendocrine Cancer.
Am always searching for more information. Thank you and your readers
for helping me in this quest.
Beth B
Angie,
Welcome to the family of Noids. I am sad that you need to be here but glad you are searching. You are absolutely right and wise to seek out others with experience with this disease. You already know more than I did when I was diagnosed, keep reading! The cancer patient must be their own best advocate.
My advice would be to join two online support groups for carcinoid where you will find a ton of experience and compassion:
http://www.acor.org (once there, find the carcinoid group and join.)
On Facebook, there is a group called Carcinoid Coffee Cafe. It is a private group so you just request to join. It has become my favorite support group.
Both of those groups are monitored by a doctor who is an expert in the disease and there are too few of those!
There may be a local group near you where you can meet other noids face-to-face. Ask once you have joined the online groups.
You’ve probably found it already but read everything on http://www.carcinoid.org.
In my post here:
http://dev.cyrilfb.com/carcinoid-tumor/handbook-netscarcinoid/
I have pointed to a couple of very good booklets on the disease.
I hope you continue symptom free and get all the care you need.
May we all have the best possible outcomes,
Cy
Hi everyone. I hope this post finds everyone doing well. My name is Angie and I am a 33 year old with a possible carcanoid diagnosis. Needless to say I am very worried and scared. I went to my family doctor recently due to high blood pressure issues. Upon return of routine blood work my liver enzymes were elevated. She ordered an ultra sound and they saw some “spots” on my liver so she further ordered a ct scan. My results were 5 possibly 6 carcanoid tumors on the liver. I have had no symptoms thus far and I’m awaiting biopsy to confirm. I’ve also been informed this probably did not start in my liver I know after reading a lot of people do not have any symptoms of carcanoid syndrome and like mine the tumors are found accidently. I may be jumping the gun but it just felt the need to talk about it to others who may know how I am feeling right now…. Thank you
Angie
I have been reading your blog, very helpful. I kinda got called down on carcinoid cafe for asking a question several months ago for not searching for the answer, which i did do. I would like to ask you a question if you don’t want to answer I understand. Have had this 3 years, had tumor taken out behind my navel, big one doc said it had been there at least 20 years, they took 8 inches small intestine and 8 inches colon. I have done great. Get the shot every 28 days no problems ct scans were shows spots on liver were disappearing or shrinking and Chromgrantic and serotoniun were way low—until 2 weeks ago seritoinun and chrom grantic both were high, serit was 323 and chrome was 20 which doc said it was not bad. Had ct scan had been 1 year everything looked same except for one spot on liver had grown a little. Doc was not worried about it is going to keep check on numbers for about 3 months and on spot. He said sometime the spots have a tendency to go up and down sometimes same for numbers. Have you ever had this and if it keeps growing what is first thing they do. I ask lots of question other day but think I asked wrong ones. I kept asking him am I going to die soon thngs like that was not thinking straight I was so scared and he is the best doc. He has a cancer center and is a ocogoly there are 4 of them in that center. When it comes time to have major things done he will work with the specialist with me. I live close enough I plan on getting in with Dr. Woltering or Dr. Lui. As long as we stay on top of all the changes in our bodies then we should have a pretty good life expantancy. An I thinking right on that Even no I am so scared I don’t know if I am asking in the right way. I have no symptons at all, no pain never hurt do whatever I please and I am 70. Would like to hang around this world hopefully at least 15 years. I would appreicate anything you can tell me. Am ebarassed for this to be on your blog.
Welcome to the blog Kay W.,
Never be embarrassed to ask questions.
The Nola clinic statistics indicate that removal of your primary tumor should give a 50% probability of at least 10 year survival. Your doctors will generally not predict. It’s too difficult because each of us is different!
I had slight changes in size for my liver tumors. Also test scores that fluctuate. Trends over time are what matters.
I have 2 tumors in my liver. If there are significant changes in size or my symptoms, I plan to have radio frequency ablation. That should be a minor less dangerous surgery. You should talk to your doc about that.
May you have he best possible outcomes,
Cy
I was just diagnosed with a carcinoid tumor this past Sunday when my gastro Dr called me at home to break the news. It was found during my 1st routine colonoscopy when Dr decided to take a look at my small intestine. I really have not had any symptoms that I recognized as anything out of the ordinary. I’ve had hot flashes, but I thought that was age related, even though I’ve been taking progestrin for several years now. Anyway, I’m just beginning this journey to research all I can to help me have the best possible outcome. Thank you for sharing your story Cy.
Sorry you have to join our group of noids. Glad you found me. Also glad that you are starting the research.
Use carcinoid.org both their web page and their facebook.
Use acor.org
If you are on facebook use the Carcinoid Coffee Cafe which is a closed group.
I do wish you the best possible outcome.
Cy
Thank you so much for getting back so quick. I will definitely look up the Facebook page. I have had all the tests but my last one was over a year ago now. All normal. He did an MRI of my liver in Feb this year, which he forgot to review as he forgot he had ordered it. He only saw it last week when I met with him. Anyway, this has shown a 13mm lesion in my gallbladder which although he said could be the cause of my symptoms, I was told today by the nurse that it is likely a polyp and it’s not suspicious. Waiting an US for that now to confirm. Lol. He is the second opinion as local hospital admitted it was beyond them. I’m not brave enough to say I have it. I think this illness has played with my mind; I feel like I must have made it up/it’s all in my head etc. I know it’s not but when tests are normal, and I have felt so I unwell, and the fatigue when that hits is indescribable, I get paranoid about what people must think of me. I also worry that you guys who genuinely have it must think I’m silly but your kind response shows just how wrong I was. Thank you.
Hi. I’m from the UK and I think most of you on here from America so you might not be up to help and I just feel at a loss and found this site. I feel like I am going mad and feel free to tell me I am! About six years ago when I was 35 I suddenly developed flushing all over my face and upper chest. I ended up in hospital with a very fast heart rate and low blood pressure. I was told for years it was allergies but eventually they did full tests as I insisted because I was starting to think I must be allergic to everything, and I have one of the lowest allergy/intolerance levels he’s ever seen so ruled that out. However, luckily perhaps I flushed in front of him and he said that it was ‘text book’ flushing from carcinoid syndrome and referred me straight to an endocrinologist. 15 months later and I am now under a top hospital in London. He started me on octreotide injections which I have 3 times a day and oh my goodness it is amazing, the flushing, fast heart, cough and diarrhoea have almost stopped (I have some symptoms but much less frequent or severe). In the last 18 months I have also lost 10 stone as my appetite completely went. My consultant however is “quite sure” he “would have found tumours” so is adamant that it is not carcinoid syndrome. I am so worried that he just dismisses this even though octreotide is working and he can’t say what else it is. I don’t know if this is common, I’m reading on here that it is sometimes they don’t show. I feel like just giving up, accepting this is how it is and crossing fingers he was right. I feel so alone, no one knows about octreotide locally so just get blank looks when I say what medication I have. Then they ask what my illness is … “Errr nothing” is my usual response – cue more blank looks! Am I mad, or might this still be carcinoid? Apologies for the rambling. Thank you for taking the time to read this.
Hi Jo,
You are perfectly sane! Your case is textbook carcinoid.
I frequent a private Facebook page called Carcinoid Coffee Cafe and there are a number of people who have the same situation. If you are on Facebook, I can introduce you there so that you can read and ask questions if you would like.
Also, go to http://www.acor.org and find the Carcinoid Tumor group. You will find many there who suffer the same problems. This is an email listserv, easy to join and read. You can read it on-line without joining, I think.
Both groups are monitored by doctors who are well-known specialists in NETs.
What your consultant is not telling you is that many times the tumors are so small that they will not show up on CT Scans or PET scans or MRIs. Even an octreoscan designed for carcinoid may not work because the tumors might not have octreotide receptors. But you should have had at least CT scans and maybe an octreoscan to try to find them.
You should have also had blood serum tests for seratonin, chromogranin A, and gastrin. High values on these give an indication (not proof) of a carcinoid tumor. A separate test called the 5-HIAA urine or blood test can also help prove the existence of carcinoid tumor.
If you can find another carcinoid or NETs specialist and get a second opinion, you should.
So you are not mad. If I were you and people ask what your disease is, I would say “Carcinoid Syndrome”.
Namaste (In Hinduism means “I bow to the divine in you.”)
She hasn’t been tested but I will see to it she is. Thank you so much for your time.
My daughter is 17 years old. She has had horrible facial and neck flushing for about 8 months. She has had blood work three times that keeps showing she has low b12. Even after a negative test for pernicious anemia and weekly/monthly injections she can’t absorbed the b12. She has bone and joint pain but her main complaint is her flushing that last for hours and chest pain (new symptom of coughing but not much). Does this sound like carcinoid to you? She has been to rumatologist and neurologist but no one is paying any attention to this flush that makes her face feel on fire and her heart beat in her face(her words) she has had horrible reflux since birth . Thanks for your time. Thanks for sharing your story.
Carcinoid is a rare disease and it is much more rare for a young person to have it. Has she had seratonin and chromgranin A and gastrin blood tests? These might be high which could indicate carcinoid. In fact one of my problems was high gastrin caused by the carcinoid, which caused constant acid stomach and eventually a bleeding ulcer.
Carcinoid tumor is symptoms are so non-specific that doctors rarely look for it. It’s hard to find often as well. You daughter’s symptoms could be carcinoid tumor in any number of places. She should be checked. The inability to absorb B12 is a known symptom of gastric carcinoid. Perhaps an endocrinologist would be a good place to start.
May you both have the best possible outcomes,
Cy
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Hi my name is Steve and I’ve been having symptoms for 5+ years now and am not able to get a diagnosis. My most noticeable symptom is my flushing but it can cover my entire body. It feels pretty much like a 1st degree burn or a sunburn which one can feel for themselves just by touching my skin when flushing. I also have fluctuating BP, stomach pain, headaches, neck pain, chronic cough, and more.
I have had 3 MIBGs, 2 came back with activity, and the 3rd which was my latest came back negative. I had an octreoscan not long ago which came back with activity in some areas which I was told was normal. It also came back with activity in the head which they believe is a false positive but am going to see a neurologist to discuss the results regardless.
I have had multiple 24h urine tests which have not shown anything except for high dopamine. I was then tested for HVA which also came back high. They then tested me for SDHD which came back negative, which I’m told rules out any known causes for the increase in dopamine, but I’m also told that it doesn’t rule out neuroblastoma.
I know you were diagnosed with carcinoid and who knows what I have but as I mentioned the flushing is the most visible symptom I have and nearly every doctor I’ve seen has seen me flushing but just tells me I’m interesting. I guess carcinoid is the most known NET for flushing but at the same time nearly every other NET can cause flushing.
So I was wondering if you’ve heard of anything like my case? Dopamine/HVA high, they cant find anything in the scans for the most part. I’m currently in contact with the NIH but am uncertain of how long that’ll take.
Steve, Sorry That you have these troubles. No I have not heard of The dopamine reults like yours. Have you had blood serotonin, chromogranin A, and gastrin tests. My urine test was negative but the others were all very high.
I have had chromo A and gastrin tested. Cant say I’ve had a plasma serotonin test but I will bring it up in my next appointment.
I know this is an old post but Steve, wondering if you ever found out anything about what was causing your flushing? I also have high dopamine (not super elevated, 700 when 500 or less was normal), normal 5-h1aa multiple times. It all started w a hives and angiodema incident, which lasted for weeks and was apparently the worst hives my allergist had ever seen. Now I’m on xolair, but since then I’m flushing often, from alcohol or from stress at times. I am half Asian so I’ve always had a bit of this w wine but it’s far worse now.
I hope some test can help you. My only experience with flushing has been after a tumor was removed which generated a large amt of somatastatin. Wish you well.
Hi All my Name is waqar i am 31 years old guy i have surgery last month of my colen cancer its fully removed by SERGERY.but i have 4 small Spots in found in my liver the biggest One is nearly 1 cm and its neoroendocrine.So there is any one have some Informationen about .my oncologest Dr say its traetible .but i am still worry about that .
Waqar,
Sorry that you are suffering this.
You do not say if the colon cancer was Neuroendocrine (Carcinoid). If they already know your liver spots are neuroendocrine then it probably was.
It is treatable (probably not curable). Hopefully the doctor will put you on Sandostatin injections. Other treatments should happen as needed.
I suggest that you go to http://carcinoid.org/ and read as much as you can about it. Go back to your doctor with all of your questions from the reading and you can join the carcinoid group at http://www.acor.org/.
Carcinoid.org has a list of doctors who specialize in carcinoid. If possible, you should contact one of those doctors and get another opinion and a recommendation for treatment. Hopefully, your doctor will work well with a specialist and take their recommendations.
May you have the best possible outcome,
Cy
I would like to update yall. I was supposed to have my procedure today, but the pre-op pregnancy test was positive, much to our surprise. The doctor said it’s fine to leave in. He didn’t think it would grow, but I will see him again soon.
Hi Cy,
When you had your liver surgery were they able to get all lesions or just the largest? My father had a carcinoid removed from his lung 3 years ago and had no visible evidence of anything else until a few months ago when they found spots on his liver. There are 5 of them but they are all very small and he had no symptoms. Right now they do not show to have the receptors to use Octreotide. The doctors said it might be because they are too small. His tumors are a mix of typical and atypicals cells. He has done 3 rounds of chemo (cisplatin and etoposide) and it did not work. They are trying him on another type now and is going to be starting his second round today. They are hoping that this will kill off the atypical cells or at least stabilize the tumors. I asked the doctor about surgery but he said because there are several lesions, and in several locations it wouldn’t make sense to do that right now. He has no carcinoid syndrome syptoms right now. I am a bit nervous since the first chemo did not work and we can’t use octreotides type drugs. I am hoping there are some new clinical trials that will come out. I just don’t want to run out of options.
I am very sorry to hear that they found cancer on your bladder. I wish you the best of luck with that. Thank you for doing this blog it is very helpful. It is amazing that you are going through so much but still want to help others.
Stacey,
Sorry that your father (and you) are suffering this. On my liver surgery they took about half my liver to get out the largest tumor. There are two smaller tumors in the other half of my liver. The surgeon had planned to kill them with radio frequency ablation (basically microwave them) but after 5 and a half hours on the table, I was losing blood and he felt he had to close me up.
I still have those tumors. They have not grown since then (10 months) and I have very few symptoms most of the time. When they grow or my symptoms worsen, we will do either radio frequency ablation or chemoembolization. I hope that your father’s doctors have discussed both of those options.
Chemoembolization is accomplished by running a tube up a vein or artery into the liver to the tumor, then placing chemo at the tumor site and blocking the vein (embolization) so the chemo stays there and the tumor is robbed of oxygen. They sometimes do this without the chemo (bland embolization). No surgery. When I had it, it killed or reduced five tumors and sort of de-activated the large tumor but did not kill it. There is a limit to the size of tumor it is effective against. After five months, it started growing and giving me symptoms again. The procedure made me quite sick for about a month but I had no symptoms for about 4 months after that.
Radio frequency ablation is done by making a small incision and inserting a rod into the patient to a tumor and killing it with microwaves. This is not a major surgery with limited recovery time. Again there is a limit to the size of tumor it is effective against. We are thinking that we will do this to my tumors when they start growing or my symptoms increase.
Make sure these options are discussed.
May we all have the best possible outcomes,
Cy
Wow… you have been through such an ordeal…but you are so strong! I have been searching the internet for help and stumbled upon your article.
I get laryngitis 10 -20 times a year because I have large amounts of acid pushing up from my stomach to my throat, most of the time the acid comes into my mouth, and the acid burns my larynx causing me to have no voice.
I have been for an endoscope and results came back pretty much normal. I’m on so much medication and have been battling with this for my entire teen years – I am 18 now. I don’t see it ever going away and I don’t know what it is. I also get really bad pains in my stomach and I feel lethargic. Every doctor is stumped. They even put me on sedatives just so I can sleep a night with out staying up from pain.
In all your doctor visits and medical encounters, have you ever heard of what I am experiencing??
The worst is no one knows what it is or what would help… please, if you know anything about this or have heard of something similar please email me – taylaktictac@gmail.com
thank you
I am very inspired by your article and I hope you get better and stronger. God bless you.
Tayla,
I am sorry that you are suffering this way. I do not know of anything that includes so much acid problem.
Young people do get something called Crohn’s Disease which has similarities to Carcinoid Tumor and is often accompanied by other inflammations. Perhaps your doctors should be looking at that. They probably have already. Another disease which causes abdominal pain is Ulcerative Colitis. There is a less serious version called Irritable Bowel Syndrome.
None of these however have the strong acid problem which you describe (at least that I have heard).
As you saw here, my Carcinoid Tumor have generated large amount of gastrin which causes the stomach to generate too much acid. Have your doctors done blood tests for gastrin? If you have far too much gastrin then something in your body is generating it like my tumors have been in my liver. This could lead the doctors to something maybe.
I hope the causes of your illness are located and treated.
Cy
You are such a fantastic human being…..Thank You
Thanks Jennifer. I am reaching out to you via email now. I had pretty much done the research and after my (minor) surgery this week will had planned to ask for the exact 2 tests you mentioned. Thank you.
Thank You Cy, for being “The Messenger”
Hope to hear from Shane in order to gently share my guidance.
Here to help with this Familial Carcinoid Topic, that I unfortunately know too well.
Dear Cy, Please offer my e-mail to Shane, as I can be of further assistance to Shane & family. We are the rare of the rare, & there is termendous help for the familial form. Best Dr’s, researchers, surgeons in the country. To top it off scans are Free of charge. Won derfil gift for the few of us that have the dx proof of carcinoid in our family line. They have 2-nuclear scans I take there as well. Thank u for asisting in my request.
Jennifer,
Done… It is up to him to respond.
Really great that you have this blog. If you can just change one life with it, then you’ve done an amazing thing. I am a rather unique situation. My father passed of carcinoid, it was too late when they found his for a cure, he lived 5 years in pain. His two sisters also had it. Plus, on my mothers side one of her sisters died 2 years ago from it. So, genetically I am not in an great place. I’ve had very mild carcinoma in situ (rectal) 3 times now in the past 5 years. Surgery always, small, early, yada. I am wondering if I should be proactive and get some labs (serotonin) or urine (5HIAA) or some scan of sorts….I am also blessed with Chronic Hep B and in my last ultrasound the doctor said there was “something” but he reviewed it with the radiologist and agreed it was “unremarkable” but, i dunno…I’d rather have a “no, its fine” Does any of this sound alarming? Any genetic testing, proactive testing anyone would suggest? My family all are in rural areas and do not have the best care, I have a decent PPO and in Chicago so seeing a specialist is easy for me. And, work wise I am in a position where its probably the best time now to get any tests. Any help is appreciated. I am brand new to all this so I dont have feedback for anyone, but I’d appreciate any.
Shane,
Yes! It’s alarming. I am not a doctor but I would think that you should have at least the blood tests (seratonin and chromagranin A) once or twice a year.
The National Institute of Health (NIH) is doing a familial Carcinoid study. Go to this website: http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2008-DK-0098.html
They recruiting all members of families with multple occurances of carcinoid and they offer free testing.
This sounds like something important for you and other family members to look into.
May you have the best possible outcome,
Cy
Go to carcinoid.org educate yourself. Do an Octreoscan, take the lab tests, go to a Carcinoid conference. Join a Carcinoid group in your area. See a specialist. Educate, Educate and educate. Take control of the disease.
Henk
Carcinoid 1992
Thanks Henk,
I could not have said it better.
Cy
Thank you, this is the most amount of pain I have ever had with any procedure, my cardiac catheterization did not hurt this much. They think the pain could be related to my liver. I hope for 2 things, they caught it quick enough and it is treatable and thank you for thoughts, greatly appreciated, also you can let your friends know that I reached out to someone named Douglas Fraker, M.D. at Hosp of the Univ (HUP) who sees patients in his clinic for carcinoid tumors and he has offered to see me but I have alot going on and I kept my options open with him but it is great for someone else as well. My gastroenterologist is from HUP and is very good but not as familiar with carcinoids as this Dr. Fraker.
I found his name on the carcinoid website for doctors who see patients who think they may have a carcinoid tumor or suspect carcinoid with your lab results and CDs of what testing you have had done.
Fondly,
Tony
I’m 66 living in California I knew that I had a 2cm nodule in my lung was on 2004,2010 increased to 3cm , now I live in Sydney, with a a PET-CT was that I have 33 mm round lesion I was schedule to do an operaton pending 2nd opinion.
The PET-CT also found a 18 mm polyp then we proceed with a colonoscopy doctor found a 4cm the he to a surface sample to be biopsy and the results were benign.
Now I’m schedule to remove the 4cm polyp with a upper level specialist doctor also on a colonoscopy procedure.
simple question, what are my changes for the future.
Thx.
Walter
Hello Walter,
I am sorry that you are going through this. First, remember that I am not a doctor.
You do not say whether these tumors are diagnosed as carcinoid and whether you are seeing a carcinoid specialist.
Lung carcinoid and mid-gut carcinoid would have different prognoses. Survival rates are much better when the known carcinoid lesions are removed surgically.
Here is a link to a study that gives some survival-rate data for carcinoid:
http://onlinelibrary.wiley.com/doi/10.1002/cncr.11105/pdf
Always remember that survival data is an average. Any individual patient can do much better or much worse depending on many factors. That is why doctors do not want to give it to their patients.
May you have the best possible outcome,
Cy
Ok. When you are ready to learn more about this you will continue, I hope. Baby steps.
Sorry no gene has been discovered as of yet. I am involved with that NIH study in families of 2-or more with dx proof of Familial midgut carcoinoid tumors. You must have 2-or more blood relatives with a dx proof of a Pathology Report or Death Certificate stating so in order to qualify. Just scan clinicaltrials .gov and place in your condition for any decease.
My doctor is really calm and not that worried about this. I have read so many things on the internet. I don’t know how to feel.
Lauren,
Your doctor is calm because carcinoid usually is not an immediate threat to your life like many cancers. Especially if it has not metastasized.
Hopefully you will get treatments to alleviate any pain or discomfort.
May you find the best possible outcome,
Cy
“Surgery” is thursday. I will have a rectal EUS with hopeful tumor removal. Hopefully the tumor is not in the muscle or lymph nodes. Feeling very, very nervous.
Lauren,
It’s certainly normal to feel nervous. Each of us has to go through this kind of thing and we are all extremely nervous! Just move forward one step at a time.
I hope that your doctor is familiar with “carcinoid crisis”. I wrote about it recently in the blog (http://dev.cyrilfb.com/carcinoid-tumor/carcinoid-crisis-part-2/). I do not know if it is common with rectal carcinoid, but the doctor should know about it and probably be prepared for it.
May you have the best possible outcome,
Cy
If you have an elevation of biomarkers , carcinoid patients are able to be included in the new Free NIH Gallium 68 DOTATATE Study. Contact Roxanne if you ever receive elevation info. in order to see if you fit the criteria to be included for the trial. Evaluation of 68Gallium-DOTATATE PET/CT for Detecting …
clinicaltrials.gov/show/NCT01967537
Best of Luck, Jen.
Wow, thanks. This is so new to me. I guess I should ask for genetic testing since I am 23?
I am assuming you have been dx with hindgut carcinoid, Lauren? Do you have elevated biomarkers? (Blood, Urine) Have you had the Galium 68 scan yet?
Jennifer
Yes, hindgut and no I have not had any testing done yet.
I am 23 and two days ago was diagnosed with rectal carcinoid tumor. I had a colonoscopy novermber 2012 and they removed a very large polyp. The doctor also said he thought I had a lipoma. Fast forward to february, i have a repeat colonoscopy and he takes biopsies and it comes back carcinoid. I am very frightened that it has metastasized although my doctor said he would not be worried if it was him or even his family. He said having it in the rectum is one of the best places because they usually never spread or dause hormones. I am always the exception to the rule so i am pretty sure it has spread. I have a two year old and am very frightened i wont see him grow up. I will be having an endoscopic ultrasound and they will measure the tumore and try to cut it out at that time. I do have tachycardia but I have had many many tests done. I have anxiety very very bad and unless i am going through a very stressful time I don’t have an problems so i do not think this is carcinoid syndrome.
Hi Lauren,
I am very sorry that you have to endure this. But remember that you CAN endure this! With surgical removal (even partial removal), many specialists believe that a noid has at least a fifty percent chance of living 10 more years and I personally have met a woman who is 24 years and counting. Surgical removal is also believed to double the time until the disease progresses any further.
You are right not to blame other symptoms on carcinoid immediately. I hope that you can see a specialist in carcinoid. Your doctor sounds knowledgeable but someone who sees carcinoid every day may have better insights for you and your doctor can work with a specialist to determine the best treatment plan.
If you are having carcinoid syndrome at all (or if they determine that tachycardia is syndrome), they should put you on Sandostatin quickly. This might relieve the syndrome and can also slow the growth of any additional tumors.
Keeping positive attitudes, enjoying life and your family as much as possible is the best personal approach you can take. Remember that you could easily have many years ahead of you.
May you have the best possible outcome,
Cy
Thank you very much. It is comforting to find others who have gone through this. My doctor said he does see this often. I am about 3 to 4 hours from Duke and that is the closest specialist who is accepting patients. I am thankful to have a doctor who listened to me and did not put me off.
Hello, Cy I could comment on so much that is written here – especially to Stacey, Diane Bruns and Chris from Australia. One thing I would say is that the diagnosis and prognosis of this dastardly disease is complex and there ARE false negatives – I know. A radioactive Octreotide PET scan can be -ve ( in Aust we now do a Gallium68 DOTA scan which is even more sensitive) – in fact it can mean you have the most aggressive of neuroendocrine tumours (I cannot help but wonder if this is the answer to Diane Bruns queries – with this aggressive type, called ‘poorly differentiated’ you may only have a few months from diagnosis). After 4 radioactive scans which did not light up at all, I pushed for a Fluorodeoxyglucose scan(FDG)- this was highly +ve which means very aggressive. I have a multitude of metastases to liver, no known primary, and no receptors to receive any of the Octreotide type injections. There can be no surgery or known treatment – maybe chemo for end stage symptoms. In Feb 2014 the round of tests began and 12 months later the drs are surprised I am still here – albeit a CT last week showed more and bigger tumours, and I have distressing abdo pains. Also you cannot rely on the diagnosis from a liver biopsy – mine was read completely differently when I went to Peter Mac in Melbourne for a second opinion. You cannot rely on the blood test Chromogranin A – mine is up and down. A lot depends on the skill of the technician and who reads these things. In the early days of diagnosis and trying to inform drs, my sanity was saved by an excellent article, ‘Changing Paradigms with Molecular Imaging of Neuroendocrine Tumours’ Holman and Hicks. It would help if you had a little bit of medical nous, but stick with it and you will get the gist of this article! Sorry if there are a lot of negatives here! – the vast majority of you will respond well to somatostatin anologue injections etc, and live long productive lives. I wish you love and deep peace. Fran
Fran,
Thanks for these comments. We all should be cognizant of the fact that each patient is different and both the diagnostic tools and the treatments will not work in many cases. Or, the diagnostic tools will be interpreted differently by different medical people.
My chromogranin was going up and down. The 5 HIAA test which is supposed to be an accurate measure of seratonin, showed very little while my blood serum seratonin was out of normal bounds and I clearly had tumors in my liver!
Sorry that you have to suffer this.
Thanks for the article, for the benefit of readers here is a link:
Changing Paradigms with Molecular Imaging of Neuroendocrine Tumors
As you say, it is extremely technical but could be helpful.
May you have the best possible outcome,
Cy
Thanks for creating this timeline. I’m concerned I have carcinoid, and finding information like yours on the Internet is really helpful. Going for diagnostic laparoscopic surgery day after tomorrow, which was scheduled after I spent several days in the hospital with a small bowel obstruction. Have had several small bowel obstructions over the past four years, but the ER folks kept sending me home, telling me “gastritis.” This time the radiologist pulled the old scans, made some comparisons, and called in a surgeon. Well, hopefully I’ll have some answers this week, good or bad. Again, thanks for posting this.
ANYONE OUT HERE HAVE DIAGNOSIS PROOF OF CARCINOID IN THEIR FAMILY-LINE AS I DO??? MYSELF & MY AUNT HAVE MIDGUT. THANK YOU for your attention
Thanks Cy.
I may ask my dr for some blood work first. What are the standard tests to ask for.? Would blood work offer some answers?
What is the gold standard for a dx?
Thanks again. Hope you enjoyed this beautiful day in Colorad today.
Teresa,
There is no sure test for diagnosis of carcinoid except biopsy of a tumor.
Blood level seratonin and blood level chromogranin A are often indicators but again may not be high even if you have the disease or might be high if you do not have the disease.
Mine was diagnosed by a needle biopsy of the tumor in my liver (which they originally thought was a cyst.)
Many people are diagnosed when an endoscopy or colonoscopy finds a polyp which is biopsied.
Other diseases can have similar symptoms to carcinoid.
I hope you have a beautiful outcome like we have had some lovely days in Colorado this week.
Cy
Great Blog! Rd in Sept after I convinced my gastroenterologist that my symptoms matched those found on the internet!! Now under care at Cedars Sinai in L.A. On Sandostatin 30 lar but not much help with symptoms. Biggest problem is weight loss. Started on Creon yesterday to help my malabsorbtion problems. Will keep you posted if you are interested.
Dave,
I hope the treatments help you.
People with our disease can live quite a long while with proper treatment.
You may want to join the support groups found on the internet and if there is a local support group, join that.
Cy.
Is abdominal pain a factor in your diet? That is my problem I cannot take in enough calories. I have sludge but no stones in my gall bladder.
Bill, Since my liver surgery three years ago, I have not had very much abdominal pain. Even before the surgery, it was not so terrible that I could not eat properly. I hope the best for you.
Hi Cy, I was hoping you could give me some guidance. I wrote you about 6 months ago seeking carcinoid specialist in Colorado but I have not yet contacted them because I am at a crossroads on whether to pursue this or if I am just crazy. I tend to be a hypochondriac and I have had many “health scare episodes” in the past that have stolen months/years away from my life so I now try to be very careful on self diagnosing . I have made a tremendous progress on controlling my anxieties over the past few years and I do not want to slip back into old habits. On the other hand I do not want to be blind to a real problem. A very delicate balance!
Based on your experience with carcinoid I was hoping you could provide me with some sound advice on my current concern:
Over the past 10 years I have felt “something” in the upper right quadrant of my abdomen (two inches to the right/2 inches above by belly button). It does not cause severe pain or cramping, but it is a mild pain and feels like there is a mass in there though no mass has ever been felt. If I poke and prod it it will become more sore. This is a sensation that will occur only occasionally. It will last a few days-weeks (depending how much poking and prodding I do) and then it will go away. Majority of the time I feel completely normal. There are also no other gastric symptoms involved.
I have seen the Dr on and off over the years, more frequently in the past two as the flare ups have occurred a bit more frequently. I had a colonoscopy 10 yrs ago when it first happened. In the past two years I have had ultrasounds and a CT scan (in Oct). Drs. always say it is a hernia, but nothing is ever found. My CT was normal though I have a cyst on my liver along with something else that is “too small to diagnose” (not a good thing for a hypochondriac to hear). Dr. recommended doing an endoscopy and another colonoscopy if I wanted to look into the issue any further. I have not yet decided whether to have these additional tests done.
I go back and forth with “this is so mild certainly it can not be anything serious” to “why have I had this sensation on/off for so many years, there has got to be something in there”.
Two years ago I came across carcinoid and thought that maybe this is something that it could be. I mentioned it to my Dr but was brushed off. I did not pursue it further because I do not want to be that hypochondriac girl but the more I read about carcinoid the more I feel that this could be it.
I have had numerous (unnecessary) medical tests in the past that in many cases provide more questions than answers. I do not do good in that world of uncertainty. With that in mind, I am not sure if it is worth pursuing further carcinoid testing and what tests might give me some answers. I am petrified to get anything done.
The only other symptoms I have is an increase in heart palpitations (I do have a mitral valve prolapse) that have increased over the past 6 months and some joint pains in my hands/fingers. I know that these two symptoms are very common.
Sorry this is so long. I was just going your could share your thoughts. Also, what are the best tests that can give me some answers (and not false readings)? Should I get the endo/colonoscopy or start with some good work? Or do nothing?
Thank you and I do hope that you are doing well!
Hello Teresa,
I am not a doctor. But, I believe the endoscopy and colonoscopy are definitely called for.
I am interested in why your liver is said to have a cyst. My “benign cyst” turned out to be carcinoid metastasis when biopsied. To me it is troubling that there are other spots on the liver.
May you have the best possible outcome!
Cy
Cy, it does get old after a while though, trying to get the doctor to go in the right direction. At least this one listens. I have a cardiologist appt in a couple of days I look forward to seeing what his action plan will be. Tony
Hi there, I hope this finds you well…I heard for the first tim today the saying you mention in your 1st paragraph and I couldn’t help but share this with you as I don’t believe in coincidence and I thought it was odd that the 1st time I hear this saying it pops up on my screen just a few hours later…. I have been having major pains in my pelvis and thighs and during a discussion today with my doctor he said “if you hear hoofs, don’t look for zebras.” He told me he was going to get me an gynecologist appointment as fast as possible, shouldn’t be more than a few weeks. I left his office feeling discouraged. I came home and typed in “I think I have cancer and my doctor won’t help me” and your site was the last website that popped up. I clicked on the link and read the 1st line of your paragraph and that saying was there. Maybe I was supposed to come across your website. I don’t know what I have and I don’t know if it is cancer but I am worried. Both of my parents died of cancer. My Mother died in March 2011 and my father in March 2007. Each a different type of cancer and each died within months of finding out that they even had cancer. Every doctor they had told them they were fine until we pushed for MRI’s and then we were told it was too late. I don’t want this to happen to me. Any advice for me? Thank you and God Bless.
Vanessa, do not give up until there is an answer. Perhaps the gyno will find an answer(maybe cancer maybe not). If not see other doctors. Make sure all doctors you see know of your family history of cancer.
As you may have seen in my blog, those of us with anything rare or hard to diagnose must work hard to find a doctor who will keep looking for an answer.
I hope it turns out to be something easily taken care of.
May you have the best possible outcome,
Cy
Lori, I certainly feel your pain.
Many people go for a much longer time without proper treatment. I hope that this turns out to be what you need.
I suggest that you join the ACOR carcinoid group and if you use Facebook, look up Carcinoid Coffee Cafe.
Unfortunately, many people have this disease and the blood tests and scans don’t show it.
May you have the best possible outcome,
Cy
Thank you…knowing I am not alone in this “vast wilderness” is a comfort in so many ways.
L~
As an addition to the above (sorry!)…my diagnosis is Stage IV adenocarcinoma. It has not metastisized (sp?) through blood or lymph nodes but spread through the abdomen thus resulting in the Stage IV diagnosis.
None of my blood work tests have ever shown any elevation nor have any of my tests shown anything abnormal. The PET scan that I just had (why I didn’t have one several months ago, I don’t know) showed “increased activity” which at first was thought to be from the inflammation from the surgery.
Thanks for this blog… They randomly found a NET while removing my appendix in late November, small at 1.2cm with perineural invasion. I met with the oncologist and he wasn’t worried and was about to send me out the door and I told him that I was having night sweats, flushing during the day (especially when stressed at work – I’m a nurse), tachycardia and shortness of breath… He ordered a chromogranin A.. I got a call back today asking for me to go get more blood drawn .. Serotonin and VIP. The waiting is agony…. And your waiting sounds intense too. It’s nice to see your timeline and your journey, has helped me relax some.
May your journey be the best possible Many of us can survive a long time.
Cy
Thank you so much for going into the detail that you have here about your journey. It helps me feel not so crazy after 7+ years of searching for NETs or VIpomas, going through all the testing, having elevated Chromogranin A and seretonin levels, and the docs still not able to find the tumors that make me so sick on a daily basis. I have an MRI of my liver next week as my last CT scan showed some abnormalities. The saga continues…
I’m so sorry for your struggle but grateful to know I’m not alone in the process.
Sara,
Thanks. This is rare but there seem to be many of us struggling with this. I too am sorry that you and all others must struggle with this disease.
May you have the best possible outcome,
Cy
Dear Cy,
Thanks for your story it is very encouraging. My husband was diagnosed last week with duodenal net that has metastized to,the liver. He will will have a octreoscan tomorrow and begin somatostatin injections on Monday. The primary tumor was found during an endoscopy for acid reflux. His symptoms were mild, vague and the primary care was not even going to order a scope but we insisted. Since this is so uncommon we researched to find the best doctors. Thank goodness we live less than an hour away from Duke Cancer Center. My suggestion to any other readers is to find the closest large medical center and find a dr who has treated carcinoid/nets before. Dr Morse at Duke was on the recommended doctors on the carcinoid foundation site. It is a good resource. If you have symptoms of carcinoid run don’t walk to find a doctor that will test for it.
Thanks Sharon,
Your husband’s story is familiar. It seems that most of us are found by accident. I am glad you have an expert to treat your husband.
May you both have the best possible outcome,
Cy
Hi, this is all new to me. Well, kind of. I have had stomach problems all of my life. Constipation, diarrhea and pain. About 8 years ago, I started flushing. Now, my face and neck are constantly red. I have been told I have IBS, Colitis, ulcers, and diverticulitis. I have had my appendix and gall bladder removed. About 3 years ago I started having high blood pressure. It had always been very low. I have been having strange skin rashes for a while now too. I decided to change doctors about a year ago. They were treating symptoms, but nothing else. Something did not seem right. Then I started having swelling above my collar bone. It continued to worsen. My new doctor did blood work. Something was abnormal and he sent to a blood specialist. I had terrible flushing the day I saw the doctor. After examining me, he mentioned two possibilities, one being carcinoid tumor. That was Halloween. Handed out candy, things quieted down and I got online. It is scary, I do the urine test today and I well get results Dec. 5, 2013. This will be the longest month of my life. When I looked to see what kind of doctor I had seen, I found out he was an oncologist. I am numb….I guess now I wait and see and try not to worry.
Beth
Beth,
Sorry that you have had to experience all of this. I hope your doctor has ordered the standard serotonin, chromogranin A and gastrin blood tests. Sometimes (my own case) the urine test is negative but the blood tests are positive. Sometimes the reverse is true.
You very much should go to http://www.carcinoid.org/ and read all you can about carcinoid tumor. If your tests are positive, remember that the disease is rare and you and your oncologist should work with a specialist (listed on the carcinoid.org website) in the disease. A plus if you are positive is that the normal treatment of octreotide injections could reduce your symptoms very quickly.
It is very scary. One thing that helped me during the diagnosis and first treatment period was meditation. Also the support websites: http://www.acor.org has a carcinoid group; if you use facebook look at Carcinoid Coffee Cafe. In some states or cities there are carcinoid support groups check the carcinoid.org site to find a list.
May you have the best possible outcome,
Cy
Thank you so much. One day at a time has taken on a very new meaning. You are so positive and I think it is awesome how you respond to people. I will have to look into your music in my spare time…ha ha. I will go to the websites you mentioned. It is nice to have a place to go where others may understand what we are going through. Over the years I have been tested for numerous diseases. I tested positive for HIV after donating blood. Many doctors and specialist later, I was finally sent to the Public Health Department where they swabbed my mouth and I waited 20 minutes to find out I truly did not have HIV…But no one could explain what was going on with my immune system. This is the first time I really am worried because it makes sense out of all the craziness. Thank you again…I am sure I will visit your blog often!
Beth
I was just diagnosed with the same thing. Its in my stomach …I was having problems and the doctor found through scoping me. Im scared and depressed …dr gave me results over the phone yesterday…i dont see the doctor until the 5th. Further testing from there.. Thanks for sharing your story…it has given me some type of support.
Pammy,
I’m very sorry that you have to go through this. All of us are scared and depressed in the beginning. At the time of my diagnosis, I was learning to meditate and I found that the practice helped me deal with the emotions surrounding cancer.
Bear in mind that you should read everything you can about the disease. Seek the advice of an expert and see if your oncologist is willing to work with an expert in the disease. You can find a list of expert doctors at http://www.carcinoid.org/
May you have the best possible outcome,
Cy
Found your blog very informative. My mother diagnosed with carcinoid in August 2013. Has had GI problems, flushing, afib and blood pressure swings for at least a year prior to dx. Discovered during colonoscopy in which the GI doc took a biopsy of a rough area at the ileocecal valve. Said for us not to worry, didn’t expect it to be positive. Was carcinoid. CT and octreoscan found tumors in liver. Explains her decline in health over past year. Just began the monthly LAR injections. Improvement, but not sure she can regain strength as she is 88 years old. Doctors want to remove primary tumor and resect the liver tumors along with gall bladder, appendix, and lymph nodes. Fortunate to be under care of Dr. Woltering’s group.
Cindy
Cindy,
The Sandostatin should give her further improvement as she keeps getting it.
I am 66 years old and this year had large tumor and half my liver and my gall bladder removed. I was fully recovered in three months and currently feel better than I have felt in 3 years! I hope the same for your mother.
May you have the best possible outcome,
Cy
I am also a carcinoid patient since 2003 I had tumors removed off liver(resected) in2004 recurred on liver n sm instestines n2014 had another resection since then 3 new tumors on liver again gotta do chemoembolization n Oct I’m very pleased also to b a patient of Dr Eugene Woltering n Nola n I travel from Mississippi Good luck everyone n God is good
Wow. A lot has transpired since my original post in Sept 2013. My mother is now 90. She has 9 lives, we are convinced. In October 2013, she had colorectal surgery (prolapsed rectum not carcinoid related). After that surgery, she suffered a mild stroke (afib) that affected her left side, mostly hand. She managed to bounce back, and became fairly independent as she prepared for the carcinoid surgery. Then suddenly in Feb 2014 she had severe abdominal pain, with suspected blockage. Went to ER at Kenner. Short staffed (Mardi Gras season). Much confusion in hospital, but after a week of administering massive IV antibiotics and nutrition, Dr. Boudreaux finally rolled her to surgery. Removed gangrene gall bladder, appendix, illeocecal valve and ~7 inches of intestines, along with several lymph nodes. She remembers very little of that whole episode and bounced back within a month or two. Still living independently, not driving though. This year she had angioplasty on her femoral and adrenal arteries, which has greatly improved her quality of life and blood pressure swings. Bounced back. And in June she had a bleeding ulcer (another ER visit), which was critical because she is on blood thinner. Bounced back. The tumors in her liver are stable. Next o-scan in November. She lives with shortness of breath and easily tires, and seems to complain alot lately of back and shoulder pain. Could be arthritis, but she is 90. We’re grateful for every day we still have her with us. Good luck with your upcoming embolization.
Thank u so much and I’m praising God for ur Mothers recoveries n every day is a bless day n I love Dr B at Kenner’s Hosp that Team over there is awesome tell ur Mother she really has encourage me good luck n God bless
Hi there – I have been having some abdominal problems for the past few years without any resolution. I have asked my Dr. about carcinoid but he always brushes it off. I too live in Colorado and would love to know the names of your Doctors and the experts in this area. If things do not improve I may get another opinion. Thank you. Wishing you the best.
Teresa,
First, look at the Carcinoid Cancer Foundation list of doctors here:
http://www.carcinoid.org/patient/treatment/find-a-doctor
My doctors are with Kaiser Permanente which is an HMO. You would have to use Kaiser for your insurance. The Doctors all are very competent but Kaiser is known for a conservative approach to Carcinoid and I had to get an opinion outside the system to get the treatment that I needed from Kaiser.
Oncologist: Dr. Karen Kogel
Surgeon: Dr. Phillip Neff
Radiologist: Dr. Anondo Stangl
I got my second opinion from:
Dr. Tom Purcell, Phd, Oncologist and Director of University of Colorado Cancer Center, Assistant Professor University of Colorado. He spoke to our support group with an expert in Carcinoid and is knowledgeable and easy to work with. Among other things he specializes in Gastroenterologic Cancer (Colon, Stomach, Esophageal, Liver).
May you have the best possible outcome,
Cy
My mom has had nets since 2001, which was accidentally found during a hysterectomy. She has spent the last several years on the sandostatin.. The last 14 months of her life the hormones from the tumors have made her so sick, her blood pressure is out of control, she became diabetic over the years secondary to this cancer. Her md and radiologist were negligent In discovering the carciniod on her last 2 scans that is now wrapped around her colon.. If we are lucky, We may have 1-2 months left with this beautiful woman.
I wish you all my prayers in your journey with this devastating disease.. I hope that the united states will follow swedens footsteps and begin real treatment here ..the pharmaceutical companies must be stopped in their continuation of blocking successful treatments that are available into coming into this country..
Mom has been fighting this for 12 years, she’s tired now, I hope the will be better opportunities for you.
Thanks Rebekah,
I’ve only been at it three years now and hoping for new and better treatments to develop during my lifetime.
Sorry to hear about your mother. So many people seem to be poorly monitored/diagnosed.
May you and your mother have the best possible outcomes in your life.
Cy
Three years ago my father was diagnosed with an atypical carcinoid tumor in his middle lobe of his left lung. They took out the lobe and he was cancer free for 3 years. He just went back for his 3 year check up and there were spots on his liver. Had a biopsy. The results showed the same type of cells that were in his lung- atypical carcinoid. The doctor said they are middle of the road aggressive. They can’t do surgery because there are several tumors in different areas of the liver.They want to do chemo to try and shrink the more aggressive cells. They are going to do an ocreotide scan to see if the injections would work. He is going to Dana Farber Cancer Institute in Boston which is an excellent facility. Does this course of treatment sound like it makes sense to anyone? I should also mention that he does not have any symptoms of Carcinoid Syndrome. They are also going to do a PET scan to see if there are tumors in any other places(we are keeping our fingers crossed that there are none). Thank you for writing this blog it has been very helpful.
Stacie,
Thanks for your story. I hope the octreoscan shows that he has octreotide receptors on his tumors. If so then a very specific chemo might work.
The PET scan may work.. It only is useful for faster growing cells than typical carcinoid. Since your father has atypical it may work. Otherwise the octreoscan will show any other tumors if he has the receptors.
If the octreotide receptors are not there, there are at least two other options: Chemoembolization which I had, they can deliver the chemo through a vein into the liver and block the vein to keep it in. For me that worked for 3 tumors but not for two large tumors. They can possibly do Radio Frequency Ablation. With RF Ablation they make a small hole and put a rod though the hole into the liver next to the tumor and the rod can microwave cook the tumor to kill it without much damage to the liver.
I believe that either of those procedures could be done no matter where in the liver the tumors are. I could be wrong.
May you and your father have the best possible outcome.
Cy
My mom was diagnosed in Jan of this year with carcinoid after surgery for what we thought was bowel obstruction. We had never heard of this disease. Looked like everything was removed and edges were clear. Went to oncologist in March. Had octreo scan and all was clear. No cancer. Went to Dr Apr, May, June, no blood work was ever done or test of any kind. Got sick end of July. Had contrast Ct scan on Aug 6th and passed away on Sept 14 after 6 days home with hospice. We are just in shock and feel like we are not being informed of things. Now saying that 2nd bout not carcinoid although fluid removed was shown to be goblet cell carcinoid. Says carcinoid is so slow growing that this appears to be sm bowel adenocarcinoma. How could this happen in 4 months and does anyone know if blood test are usually performed at every appt? They would only talk to her at apps and then 4 months later it is everywhere? Just don’t know how this could be or could it have been caught sooner with blood work or test performed. we are just numb because it just hit so fast and out of the blue. Any info would be greatly appreciated.
Diane,
I’m very sorry for your loss. To the best of my knowledge, there is no generic blood test that can identify all cancers. In fact, carcinoid may be unusual (again) because there are blood markers that can be used.
I have seen many carcinoid stories in which the patient turns out to have multiple different cancers. They are not necessarily connected.
If indeed there was a different cancer in the bowel, it is not surprising that they quit searching when they found one. I wonder if there where still symptoms after her surgery.
Our best wishes to you and I hope can gain some understanding of this mystery.
Cy
So many drs seem reluctant to do the necessary hormonal blood testing and various scans! don;’t understand it as this is VITAL information! Even MD Anderson dropped the ball and didn’t do all they should have, like serotonin tests,. Very frustrating when they make u wait and keep u in the dark! I feel some of the bigger places are too carpmentalized and don’t refer to other NET specialists within their facility like they should! Experts SHOULD know better and do the full range of tests up front, is my strong belief! Vanderbilt U in nashville specializes in NETs across the board so thinking of taking my daughter there So sorry for your loss
Thank you!
Cy,
Thanks. I’ve been cautiously limiting my searches to the specifics being presented to me as my “issues”. I guerss it is truly time to stat getting a better overview of my new nemesis.
My slogan has become FC ()although not as charmingly presented) but my wishes for all here are as yours, the best possible outcome for us all. FC
One thing to know in your heart, most of us can survive this for a long time, especially with an expert treating us.
Cy
Cy, it might be important to put this high up in ur blog! my daughter feels very hopeless after reading where you say they keep recurring. That is not always the case for all carcinoids! hers was in the appendix and it was removed. Her serotonin levels are up somewhat and they’re doing a colonoscopy. But i think people don’t need to hear that these things are going to come back and back and back…and new ones always reappearing.
She had the low-grade well differentiated type and a right hemicolectomy, which perhaps wasn’t even needed as their was some dispute about the size of the tumor. She is gaining weight and doing well, except for some abdominal swelling still.
in case it’s not clear, i was referring to putting the good news higher up in ur blog that people CAN live a long time with proper treatment, as you just said up above.
Here’s the part I think may be overly pessimistic for some carcinoid patients:
You wrote: “Carcinoid tumor is a neuroendocrine tumor often found in the midgut, that may look more benign but produce seratonin and other hormones that will lead to symptoms called carcinoid syndrome. They are often not benign but metastasize to other organs most commonly the liver. Typically they grow very slowly and are found by accident. It is not curable. Generally, it keeps generating new tumors forever.” They don’t always lead to carcinoid syndrome, they don’t always metastastize if they’re small enough and caught early enough or just not as aggressive, and some are curable through surgery etc. And not all “keep generating new tumors forever.” That is enough to make people with low=grade, small tumors totally freak out! You need to say upfront and emphasize that you already had liver involvement…not the case for many carcinoid patients and survivors! We need to realize people are coming to these sites in the throes of a new diagnosis and for many, it is not this grim…but they don’t know this and it may make them think it is just not worth it to be tested, go through surgeries, getting scans, etc. if they can never get ahead of it!
Michelle,
I am sorry that you think I am overly pessimistic. I try to point out that I am not a doctor often. You are correct that if the primary tumor is found early and has not yet metastasized, it can be cured. My point is that this is usually not the case. If there is metatastasis, it is considered incurable by most specialists. The size of the tumor does not matter.
I know some people who had metastasis and all tumors were found and removed. They have survived many years without recurrence but they are the minority. Getting tested, having surgeries and scans will insure that everyone with the disease can slow or (maybe) stop it. Specialists have statistics to show that removing as much of the tumor load as possible will normally lead to much longer life and slow progression (new tumors) significantly. But, most consider the disease to be chronic which is to say it is with you for the rest of your life but it need not be the thing that will kill you.
By getting rid of the tumors, your daughter is ahead of it! I am glad for her and hope that she is cured. She should not assume that she is rid of it forever. Her oncologist should help her establish some schedule of blood tests and scans to assure that it can be caught if it recurs. The longer she goes without recurrence, the more time can pass between tests.
May you have the best possible outcome,
Cy
hI, CY! Thanks for the list of drs! We are going to try dr. phan in houston as we live in austin. Have not been very happy with MD Anderson. They seem to cut out the appendix cancer and send u on your way without much of a glance of whether or not the carcinoids might be elsewhere. They don’t seem to take seriously her pain and swollen abdomen even a year and a half after surgery! (Also, what i meant about the size of the tumor is re the appendix: if the appendix carcinoid is less than 2 cm they don’t recommend the right hemicolectomy. If bigger than 2 cm, they feel it may have spread across mesentery to large bowel, hence they recommend removal of the ascending colon and part of the transverse–major, awful surgery! ) We are looking for a second opinion and found ur list very helpful! Have u heard good things about dr. phan? there are others in dallas i noted too. Also the vanderbilt group in tenn sounds good. Any word on good people in our area would be appreciated! or even farther if this gets more nebulous, such as Sloan Kettering or Mayo!
Michelle, Very important. The founder of the Vanderbilt clinic has just moved to Denver. Dr. Eric Liu is highly respected. He has started a Carcinoid Clinic at the Rocky Mountain Cancer Center in just the last 4 weeks! This is obviously closer to Austin and Dr Liu is the person who set up and trained the people at Vanderbilt. He is already seeing patients. You can call that clinic at 303-388-4876. You won’t regret it.
Please don’t criticise make your own blog. Thanks we know the truth and are willing to face it. Enjoy your life make it positive every day you’re alive.
Wow! I’m just a month into my diagnosis and to say my head is reeling is an understatement. Spent this morning telling my (ex) GP/gastrointerologist what he missed, when he missed it and telling him I was there just so next time he doesn’t miss it again. He said he was sorry. Didn’t quite cut it.
I’ve looked at (and run away from) so many websites that scared without informing I cannot tell you. Somehow I’m very comfortable here and the real stories from real people who just lay things out is a welcome port in the storm.
I am under the care of Richard Warner at Mt. Sinai so I will surely post anything out of the box that comes along that may halp someone else. Again, thanks for the practical preasentation.
Dr. Warner has a very good reputation as an expert in the field. Don’t be afraid to read the scary stuff; sometimes our doctors don’t share everything and each of us with a rare cancer needs to know as much as possible.
Have you looked at http://acor.org/ carcinoid listserv? It’s carcinoid patients discussing their disease and Dr. Woltering of NOLA answering questions… Good stuff.
I also recommend “Carcinoid Coffee Cafe” on Facebook. Again, it’s just noids discussing the disease and their treatments.
Finally, http://www.carcinoid.org/ has tons of accurate and timely information. They have links to other survivors’ blogs here: http://www.carcinoid.org/content/survivor-stories
They also have a facebook page “Carcinoid Cancer Foundation (CCF)”
As always, May you have the best possible outcome,
Cy
Left upper lung lobe removed in July 2008 with atypical carcinoid tumor. January 2012 three golf ball tumors on liver. Moffit Center,(great experts in endocrine cancer) and Northwestern, and I have seen the greatest improvement with the increase of my monthly dose of Sandosatin from 30mg to 60 mg, and my insurance will only pay if I take both injections at the same time…..one in the right cheek, and one in the left. With one shot the liver tumors continued to grow…..two shots and I have shrinkage and improving hormone levels. Very pleased with the shrinkage, and the opportunity to find the best people in endocrine cancer at Moffit and Northwestern. I am excited to see my scans in January. No surgery or procedures, and significant shrinkage on all tumors…….and 40% drop in hormone levels……I cannot wait for the studies to show this is a great protocol. I am golfing again, and the pain has more to do with the inflamation as the tumors shrink……good things.
I get Sando LAR 40 mg and my injections are done the same way as yours. Make sure your doctors keep looking carefully at your gallbladder. Sando will probably cause gall stones an sludge in the gallbladder. That’s why my gallbladder was removed. Usually surgeons who know the disease will remove the GB when they do liver surgery because of that problem. It also caused or increased the severity of atrial fibrillation for me so we are afraid to increase the dosage.
The sando was clinically proven last year to shrink tumors and control the start of new tumors in some patients. You are lucky. For me, it certainly controlled the symptoms and lowered my seratonin levels eight-fold and my gastrin by a factor of 3 for a while but the disease eventually progressed with rising blood levels and greater symptoms, which is why we decided to go to surgery.
For many people Sando does have the wonderful effects that you describe. I hope it continues for you.
May you have the best possible outcome,
Cy
These testimonies have been really insightful for me. My mom was diagnosed with carcinoid about five years ago. Since then she has seen many doctors who seem to at least try to follow her illness however several absolutely are puzzled at this form of cancer. Her NET is in the midgut and as of Feb 2013 she has now been told she has gallstones that can not be removed. Mom has lost quite a bit of weight. Her Sandostatin injections do not keep her diarrhea episodes low. We have not found food that she can eat that will stay in her system. Anyone with any nutritional tips to help in her weight gain would be gladly appreciated. Thank you Cy for sharing your testimony. All of you are blessed. Continue to encourage others and be an outreach to those who are unaware of this illness.
Sandostatin often does not solve the diarrhea problem for us. Remember that last year Sandostatin was clinically shown to be anti-tumor, even if it does not solve the symptoms, so it is worth having if you can. For me, a generic form of Immodium (Loperamide HCl) works pretty well to control it but not for other people. If you read the acor.org carcinoid listserv archives, there are a number of drugs that help at least some people with the diarrhea.
Unless your mother is too ill for surgery, her doctors should consider removing the gallbladder so that she will not have new gallstone problems. My gallbladder was removed along with half my liver just two weeks ago. The gallbladder was full of stones and sludge. Sandostatin causes those problems in at least 52% of patients.
For diet, if you have not read this, you should (her doctors should also) http://www.carcinoid.org/content/nutrition-and-diet-carcinoid-patients-interview-jeffrey-i-mechanick-md and this: http://www.caringforcarcinoid.org/sites/default/files/videos/Macaire_NeuroendocrineNutrition.pdf
Most importantly, do not give up! (And do not let the doctors give up!). Keep searching the web, you never know what might work for you.
May your mom and you find the best possible outcome.
Cy
Cy,
I read your post because I often wonder if I might have this. The only symptom I have is the facial flushing. I have had 6 such events in the last 4 years, and in general each episode has gotten worse. They go like this: hot red flushing of face, constricted nasal passages, tachycardia, feeling unwell, almost anxious, headache, nausea, vomiting, chills.
I have had the carcnioid urine test, but nothing showed up. And I have none of the GI or other such symptoms. If I eat alot of junk food over a period of time, I’ll have runny stool, but nothing chronic and rarely if ever like water. Eating normal food makes it go away.
I am sure you have spoken with others with this. Do my symptoms sound similair to others you have known? Or are their flushing eprisodes much more frequent than once or twice a year? I can not go any further than the urine test, since that was negative. No doctor wants to hunt beyond that.
Any tips would be nice,
G
Many people with carcinoid tumor only rarely or never have carcinoid syndrome symptoms. I myself have only had flushing once.
I had the 5HIAA urine test recently and came back negative even though we know that I have the disease with biopsies of the metastasis to prove it!
I believe that you should go to a carcinoid specialist who will listen to you and perform the tests as needed. There is a list of specialists here: http://www.carcinoid.org/patient/treatment/find-a-doctor
There are other diseases that may cause your symptoms but you deserve to get a proper diagnosis.
May you have the best possible outcome,
Cy
Hi George. Not sure if you will check this as its been a few years since you posted. My symptoms are the same as yours – have you gotten a diagnosis yet? I am being tested for carcinoid syndrome now.
Please advise I have been ill for 20 months
Now and been tested etc for carcanoid is it better to do cga test and urine after episode to get accurate results ? Thank you
Deborah,
I am not a doctor, but, I have not read that the timing of the tests relative to carcinoid syndrome episodes has any impact. No doctor has ever advised me about that.
A couple of months ago, I was negative on the urine test, yet the seratonin blood test was positive high and my symptoms were worsening.
I am sorry to hear that you are having such a hard time,
Cy
Chris, the cancer is considered incurable. As you have found, new tumors can appear even after the primary has been removed.
Carcinoid experts seem to feel that all tumors should be treated to improve life expectancy and to lengthen “time to progression”. Your doctors should be willing to investigate chemoembolization, ablation and laparoscopic surgery as well as full surgery to deal with the new tumor. If you do not see an expert in carcinoid, I suggest that you consult with one.
May you have the best possible outcome.
Thanks CY. I am seeing an expert at the PeterMac in Australia. I will discuss this email with him. Good luck and thank you again.
Do you know of patients with abdominal pain who had sludge only in gall bladder, no stones, who got relief from removal of gall bladder?
Sorry, Bill. I do not know of people with abdominal pain from gall bladder sludge. My own pain was from the large mass in liver and from the random intestinal pain caused by midgut carcinoid.
Very inspirational, thank you. I was diagnosed in Oct 2011 and had surgery in Feb 2012 to remove the primary. They tell me the cancer is not curable, so no chemo etc. They have found a new tumour on the surface of the liver, but tell me not to worry about it. Is any one else in a similar situation? Will the new tumour make a difference to life expectancy?
Hi–
You need to go to a Carcinoid specialist, not a general oncologist. Go to the ACOR website and look up specialists in your area. Waiting is something I wouldn’t do without consulting with a Carcinoid specialist.
wow
Thanks for sharing your story. I too am a Carcinoid Cancer survivor/fighter. I was dx in Oct 2009 and had surgery Feb 2010. I had liver resection, a mass in me sentry removed , and duodenum resection. The primary was finally found during surgery because it did not show up on any scans. I am starting a different chemo in a few days due to growth of liver Tumors which reoccurred 6 months after surgery. Enjoy your trip to Scotland and good luck in your surgery….. We have a group on Facebook called Carcinoid Cafe….if your interested….you’ll meet a lot of people fighting this common battle.
Thanks Cynthia,
I will try the Carcinoid Cafe.
Good luck on your journey.
Hope your surgery is successful. You certainly have had some tough times.
hang in there….don’t sell your bike just yet 🙂
Thanks John,
Long time since we rode together. Last Friday I rode 20 miles around Cherry Creek Reservoir. I’m slower but still capable of doing it.
I hope you are still riding and having fun!
Cy
Deborah,
I would think that you should see different doctors.
http://www.carcinoid.org has a “Find a doctor” section that tells you who actually knows this disease: http://www.carcinoid.org/patient/treatment/find-a-doctor
Also join the ACOR Carcinoid maillist and ask there for advice. This tells how to join: http://www.carcinoid.org/content/acor-carcinoid-e-group-archives-0
You will find that a number of sufferers have the disease but the blood tests are negative. Seeing an expert in the disease is the best option.
I wish the best for you.
I have been suffering with for 17 months now flushing , tachycardia , vomiting sometimes depending on how high heart goes and it’s gone up to 200! Have collapsed befn rushed to hospital.4 times eps indies last 20-30 mins come in cycles 1 a month or a cluster of lots in 2 days sometime loose bowels after episode but feel
Like been run over by a truck when I gave episode in bed afterwards for 1 – 2 days . Lost 2.5 stone in 4 months night sweats etc had carcanoid cga and pheo test 8 months ago when 1 st started having them all clear and because if that drs won’t re- test keep saying its a test that if you have it you do or you don’t in the mean time I’m feeling rubbish look a tomato with the flushing and fed up as the episodes are evil ! Any advise oh had the diagnosis IBs 5 years ago as really suffering 🙁
I was diagnosed with a carcinoid tumor in my right lung in March of 1999; I had the middle and lower lobe of my right lung removed 2 weeks later. I recovered after about 4 months, but as a result of the operation I now have intercostal neuralgia. My doctor has oscillated giving me CT scans and X-Rays every year from 1999. Up until recently, I have had no symptoms. However, over the last few months I have been having bouts of severe night sweats and occasional chills. Some nights are worse than others, but I am sweating pretty much every night. I also have been coughing and wheezing. I had a hysterectomy 6 years ago and am taking low level hormones, so the sweats are not related to menopause. I have orders for blood and urine tests to check my serotonin levels, but have yet to complete them.
I have Barrett’s Esophagus and based upon reading your blog I wonder if the two could be related. I am tired all the time and although I eat a pretty restrictive diet have not been able to lose weight. I have been having chest pains, but that could be just be getting older. I think I am kidding myself. Thanks for your blog.
Cheryl
I have read that “having cancer does not mean you won’t have other diseases.”
The average age for diagnosis of carcinoid is about 65 years old. By then most of us are already noticing the effects of aging. When we have carcinoid we do have to pursue all the tests to make sure that our symptoms are not the cancer.
May you have the best possible outcome.
Thanks for sharing your story. I have been diagnosed with goblet cell carcinoid of the appendix in December 2012. Had appendix and part of my bowel removed so far as undergoing chemo at the moment.
I just thought I would touch base with you and wish you all the best.
Kind regards,
Cathi..x
Thanks for touching base here. May you have the best possible results.
Catherine, My husband had goblet cell carcinoma of the appendix June of 2010. It was found during an appendectomy. He then had a right hemicolectomy and 6 months of chemo. Hope you are doing well. It’s strange to hear of someone else going through this since it’s so rare.
Hi Jennifer–
No surgery performed for the obstruction, which was located in the small bowel at the ileocecal valve, the same place they discovered my brother’s initial problem; mine began to resolve after five days on IV, nothing by mouth. Then liquid diet for five more days. And yes, I was taken by ambulance to the hospital with the pain. Never had anything like this before, ever. But prior to this, I had a hysterectomy (1978); then ovaries removed (1995); then gallbladder removed (1999). They said scar tissue can cause the bowel to twist, etc. So far, colonoscopy negative; CT enterography negative except for pelvic phleboliths; CgA blood test is within range, altho I understand that usually isn’t positive unless tumors are in the liver; next is MRI. The continuing pain is in the exact spot where the obstruction occurred. So we will see. It is good to know about the NIH study, and thank you for your concern and information. My doctors here have never had a carcinoid patient–even tho they all study this in med school, it’s not something they even considered until I told them about my brother. And diet doesn’t seem to make a difference, at least not yet. Thanks again, Jen, I’ll keep you posted.
Diana
I am a patient of the NIH study “History of Familial Mid Gut Carcinoid Cancer” The criteria is having “TWO OR MORE BLOOD RELATIVES WITH THE PROVEN MEDICAL DIAGNOSIS OF CARCINOID CANCER”…. This will then tell you to move further and contact NIH for the genetic testings and seek the wonderful scans they have available. You must be a clinical fit in order to participate in order to add to NIH data. 🙂
Jen
Jen, my brother was diagnosed and treated at H. Lee Moffitt Cancer Center in Tampa, Florida in 2001. He passed away in 2008. His death certificate states cause of death as “metastatic carcinoid tumor.” I’m currently being evaluated for a small bowel obstruction which occurred January 7, 2013, with continuing pain. They may find nothing, and even if that’s the case, who knows? They didn’t believe my brother had cancer at first, either…
Hi Diana, I feel for your pain in the loss of your brother.
I also live your struggle with this gut pain that can bring you to your knees.
Have had 3 surgeries in 3 years due to it. Did they perform surgery for the obstruction?
Scar tissue can sometimes be the culprit.
I hope you r not carrying the tumors.
But help at NIH IS out their if U do.
Let me know either way, please.
p.s. In the mean time, ask Dr. if a no fiber diet may help you during the evaluating period.
Hi again, Diana. I was looking over past notes. Have an idea that may assist you in finding possible tumor for you. If you have elevated biomarkers you may most likely qualify for another NIH study here is the link. Helpful Hint..Please call Roxanne until she answers the phone. Evaluation of 68Gallium-DOTATATE PET/CT for Detecting …
clinicaltrials.gov/show/NCT01967537
If tumors can be detected, go after the familial carcinoid NIH study!
Good Luck to you.
Thank you for your good wishes. And the same to you, Cy. My beloved brother and I tried to figure out where this may have originated in our family. We’re thinking that possibly my grandfather had it–altho seemingly healthy and robust (he was an Italian immigrant) he passed away at age 53 from an enlarged heart. It may have been that he had carcinoid and it affected his valves. I will definitely check out the NIH studies. Yours is the first post I’ve read that mentions the night sweats. When the ER doctor came in and told me I had a small bowel obstruction, I was stunned–and immediately thought of my brother…
Thanks for your blog. I’ve learned a lot already that I didn’t know.
All good things,
Diana
I have seen nights sweats mentioned a few times but only in passing. I have seen that sweats are sometimes associated with other cancers when they are active. No one has explained them to me.
Thanks for the kind words,
Cy
Diana, So sorry that you are having these troubles. As you know the bowel obstruction is a big signal of the disease. The National Institute of Health I believe is studying the genetic (family) connections for the disease. You or your doctors may find infomation there. They might want your information. I personally know a mother and son who both have the disease. Please see the best experts you can afford. I hope you already realize the carcinoid.org has a list of experts by area.
If you have not done so, you should check out the Carcinoid listserv on http://www.acor.org
As a Buddhist would say: “May you have the best possible outcome.”
Peace and my thoughts go with you.
Please reply if you and a blood relative has or had a true medical diagnosis of carcinoid cancer. Myself and my aunt…mid gut. (biopsy, path report, death certificate stating carcinoid) Thank You.
My older brother was diagnosed in 2001 after hospitalization for a small bowel obstruction. I’ve become as educated as I can be about this obscure, complex cancer since he started–and ended–his journey with carcinoid. He passed away June 3, 2008. Will check the box to be notified of follow-up comments. I was hospitalized in early January of this year with overwhelming pain due to a small bowel obstruction which resolved after four days of IV fluids, morphine, and nothing by mouth. In the midst of the maze of testing now. Hoping that this isn’t the start of carcinoid, too. After leaving the hospital, I had nearly a week of severe night sweats–something I’ve never experienced before. So we will see…
Cy, thanks for sharing your journey. I love your blog and your music. I am happy that everything seems to be going good. I hope we can ride together in the Spring or summer. I always look forward to seeing you on Wednesday nights. You always make me smile. I love your shares. Thanks for the blog and the music. I hope to see you one of these Wednesdays when I can get out of work early. Thanks again
Thanks Kenny, I always enjoy seeing you and enjoying your stories. See you soon.
Great Blog, my journey started in 2007, ongoing, monthly Sandostatin, big doses of laughter. Blessed to feel good most of the time, down is just what it means, music, book or TV. LOVE your music, lots of local music in my city, many friends involved, it is what keeps me going. This huge supply of knowledge, other patients and sharing is new to me, so needed and so appreciative.Love my doctor, could not do this alone.Thanks for taking the time to share.
Like you I feel well most of the time. There are many noids who do not. We are indeed blessed.
Love you and pray for you always!
A blast from the past! Great to hear from you. I will email you separately.
I have been having some health problems seem to be worsening and have asked my doctor to check for carcinoid syndrome, have some liver lesions and a pancreatic cyst and have had stomach trouble for years . Fast heart beat. Work in progress.
TJ
Tony J.,
Your case should definitely be checked for NETs.
If your current doctor does not do it go to another doctor.
Best,
Cy
My liver is enlarged with facial, chest flushing and a rapid heart beat which hits every other day. Am seeking out a cardiologist. I have some lesions that I could never get my old gastro docs to remove so they may have grown. I asked my doctor for an MRI of abdomen to check pancreas and liver and she did one better by approvg MRI and MRCP of abdomen. I have had abdominal pain for years. Appt is set with cardiologist but not Until beginning of Feb. Here they tell you if you can’t wait to use ER. Awaiting MRI and MRCP results but that should be back very quickly.
Keep pushing on! It sounds like you are going down the right road for diagnosis.
Have the best possible outcome,
Cy
Hello again, Cy,
I have been getting my gastro doc to start checking for carcinoid, I have had the facial and chest flushing, the loss of weight, loss of appetite and have not been feeling well overall. I had a catheterization that came back normal because they were thinking it could be heart related. I have since had a liver biopsy because I have liver cysts/lesions. I am expecting answers to come very shortly especially since one of my liver enzymes were at 1717 and the normal range for that is 15. I may have some type of liver problem that causes the flow of blood to be blocked and it is the worst type apparently and it is rare which I already have 2 very rare diseases anyway.
I do have to ask my liver doctor if this could be a carcinoid tumor instead of liver lesions/and or cysts and my bile ducts have something in them too but they are not sure what.
I don’t know how you do that “wait and watch” thing because that is what I have been doing for the past 2 years with the lesions and now they have diagnosed them as cysts and it gets frustrating.
As of 3/20/14 I had my liver biopsy and am in a good deal amount of pain which they think may be related to my liver. I told my doctors I just want answers and hope and pray that what it is treatable and was caught quick enough.
Fondly,
Tony
Tony,
For your sake, I hope the diagnosis is something that they can cure when they find or at least treat it so that you can be more comfortable for a long time.
After the needle biopsy of my liver, I got the diagnosis of carcinoid within about 24 hours. It sounds like your doctors are making an effort to solve this.
You are in my thoughts.
May you have the best possible outcome,
Cy
I listened to your music and i, t was great. Sincerely, Tony from Pennsylvania, USA
Cy, I find it unbelievable how long it takes a doctor to figure things out, they are thinking my liver is having some kind of blockage when the blood comes out of it but back into the testing stage again or I may have a blood clot located within it and they don’t know how that happened.
Had something called an MRV which apparently is new, sort of like an MRI but checks all vessels either coming out of and entering your liver or your entire body, all I want are answers at this point.
That doctor that I said I connected with is very nice at Hosp of the Univ of PA where my gastroenterologist is located.
Dr. Douglas Fraker said he can review my information and give me some ideas which I thought was great. It has been along time coming especially since I am not feeling any better and may need some type of operation pertaining to my liver but they don’t know yet.
My doctors say if the pain gets really bad to go to ER and that is where I am at the present time – 3/27/14, I had another enchocardiogram because liver doctor thought maybe congestive heart failure.
Fondly,
Tony
Hi Tony,
Quite new to all of this. Scared, and frustrated mostly.
I saw that you have met with Dr. Fraker at UPenn. My husband is meeting with him next week.
Gallbladder attack with zero prior symptoms. 4 days in the hospital, ridiculous amount of scans and labs and such. Although the gallbladder remained “unidentifiable” a surgeon suggested it’s removal as my husband was with fever and unable to eat without vomiting violently.
Laparoscopic surgery. Gallbladder torn during event. Thickened omentum biopsied. Both samples sent to pathology. Adenocarcinoma with Signet Ring Cell and Mucousis features of both, as well as a gangrene gallbladder. Found out via a phone call 2 hours after surgeon released my husband free and clear to resume all pre operative activities. Ouch. His gallbladder was literally a dead organ…and they didn’t pick up on this?!
Endoscopy, colonoscopy are clear. Chest CT is clear.
Oncologist informally gives the T a stage 3. N and M unconfirmed.
Worried beyond comprehension. 6 kids. Youngest is 9. My husband is a strong and crazy active man of 57. Coaches 2 girls softball teams, one babe Ruth baseball team, youth wrestling…and is a dual league player himself.
I’m worried of the rapid progression of this disease…and poor prognosis.
Any insight, or guidance on your experience with Dr. Fraker would be great.
Wow! Seems like you are going through a lot of crap, but I am glad to hear the results seem pretty good. I haven’t listened to your music yet but I am looking forward to it. It has been such a long time since we talked–I think you were on your bike ride the last time I was in Denver (I was impressed!) Good luck with everything, Cy. I love you and wish you a diarrhea free year! Wait, if my wishes come true, I wish your carcinoid cancer away!! I will look forward to the updates–contact me if you have some free time. Hi to Laurie!
I have elevated chromagramin A do I need a petscan cause doctors cant find were tumors are ?scared
Chromogranin A can be elevated because of several different conditions including the use of proton pump inhibitors like Prilosec and Prevacid. If carcinoid or neuroendocrine cancer is suspected, a PET scan is not normally used. PET scans are used for fast growing tumors. Neuroendocrine tumors are normally slow growing. A tri-level CT scan is normally more effective. If you have carcinoid symptoms as well, a doctor may order an octreoscan which is designed specifically for neuroendocrine tumors but does not work for some patients.
May you have the best possible outcome.
Cy,
I got a lot of information from reading your cancer diary. Thank you for being so generous and open 29th this chronicle.
One main thing I come away with from your story is – how you are to be able to go to the doctor so often.
Altho’ the primary reason I do not ‘do’ doctors is lack of insurance – I also just do not trust them.
I think they will make you sick if they can.
I think they love to push meds, many of which cause side affects worse than the initial problem they’re prescribed for.
I think they run down a lot of ‘pig trails’ and do unecessary tests, often missing the main thing.
I think they push you thru the doctors office like cattle – as many-as fast as possible.
I think a lot of These procedures are done merely to avoid law suits, and also because patients are part of these dysfuntional dynamics – going to the doctor for many things that are a direct result of their own poor lifestyle & eating habits, I think doctors often end up frustrated over the obvious problem and the patient not participating in caring for their own body.
So you see, I do see the symbiotic relationship between doctors and patients.
Meanwhile, I have a severe, sharp pain in my lower right side that occurs randomly, and only if I turn over the wrong way, But very uncomfortable pressure everytime I lay on my right side. Right side #5 pain randomly when up & about, or sitting.
Overall, right side just simply feels ‘different – not normal.
Finally went to regular doctor after over 3 years of increasing random pain.
Diagnosed as ‘a bladder infection’. AntiB’s prescribed. Fever, aches, chills ensued only 2 days into AntiB’s. Never had that happen before on antibiotics!
Ended up in ER.
ER Dr says kidney infection.
ok. Is it bladder or kidney?
Two different diagnoses in 4 days . . .
Long story short, burning up with fever, near delerium, given nothing for fever, I was shot with pennecillian-based antiB (rocephin) despite my orange pennevillian allergy bracelet. Despite REPEATEDLY asking for my regular doctor, questioning the nurse and my reluctance, she did a sample shot in my arm which produced increased itching in my hands. She also questioned me about ‘why I thought I was allergic to pennicillian?’ (I incredulouslyexplained my initial childhood allergy where my hands & feet swelled like balloons)
Finally, she came back with a shot to the hip. Her exact words were ‘We can put up with a little itching to knock out this severe infection’
After 5 hours in the ER, running 102 fever, and very weak, even tho I vocally expressed concern I succumbed to have the shot in the hip.
Within 24 hours, the severe fever returned accompanied by a severe, and itchy rash from head to toe.
Following morn, regular doctor had me return to & met me at ER where I Frank some dye, and he did an MRI – which showed no: cysts, no cancers, no infections, no puss balls on liver, appendix, bladder, kidneys, gall bladder, liver etc.
Yet there I lay, burning up with fever.
I then spent 2 days in hospital receiving intrevenious AntiB’s hourly to counter the elusive infection as well as to counter the Rocephin induced rash.
The Bill’s totalled over $10,000 which I refused to pay on grounds of every medical person involved in the fiasco.
This was 3 years ago.
The pain is still randpmly there, as always, worse more frequent at times than at other times.
All I know to do is try to eat right, pray, and love my God who knows exactly what the cause is.
I continue to work as a sign painter (hence my name)
Cy, I could not even begin to comprehend going to the doctor every month or every week.
I’ve only been back to the doctor once, recently for an abcessed tooth, bc the dentists were closed on Friday.
Sorry this was too long – I’m just rather incredulous that some people are able to go so often to doctors and have so many various procedures and tests.
btw – I make too much money for medicaide, and not enough to even qualify for obama-care – which is a complete and utterly diabolical farce and another rant for another thread . . .
Thanx.
I am replying to cy. I have had over a 100 carcinoid like tumors in my stomach for about 8 years now. I get endoscopies every 6 months to check them. I have been to 5 doctors and they are all stumped on why it’s happening. I now have pernicious anemia and have to take a b12 shot every week. They just tell me there slow growing but if they hit 2 cm they will become cancer. It’s almost like I’m sitting around just waiting for the cancer to come! Any advice?
My sympathies for sure.
First, You say “carcinoid like”. They should have been biopsied by now and proven to be NETs or something else.
Second, you should be seeing a NETs specialist and a local oncologist who will cooperate with the specialist. See the Find a Doctor page on http://www.carcinoid.org/.
Best of luck with this.
My chromogranin A is 3000, otivascan, showed parathyroid tumors, contrast cat, no tumor but egtopic pancreas. Oncologist, gi & endocrinologist puzzled. Flushing, diarrhea, vomiting, egd, colonoscopy, 24 hr urine test. All zebra
does anyone know what the worrisome high number is for chromo A? Mine is 109…. I take Prilosec daily for months. HIAA5 all normal limits…
The scores depend on which lab does the analysis. Your doctor or lab should tell you the normal range for that lab. If it is within the normal range or not you need several test during a year to determine a trend.
Prilosec will definitely make your score unreliable in any case.
Understanding all that, the lab my doctors used had a normal range of 15 to 160.