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 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.
On 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.