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.