Watch and Wait for Carcinoid Tumor

I have just finished having CT Scans and octreoscans to form a baseline for the carcinoid tumor since surgery.  The verdict was delivered by telephone yesterday.  “No surprises”.  There are two “spots” on my liver which are visible on the CT Scan and they light up the octreoscan which generally means they are carcinoid.  They were visible on CT Scan before the surgery.  The doctor advises watch and wait.

Because carcinoid tumors grow slowly and because doctors don’t really recognize the difference between carcinoid tumor and other more common cancers or the doctors believe that expert recommended treatment is too “aggressive”, many times oncologists will recommend “watch and wait” when carcinoid tumors are diagnosed.  The CT Scans are normally repeated every 3 or 4 months.  Octreoscans are repeated annually.  Any visible changes or changes in symptoms should trigger discussions for treatment.

We have already mentioned that experts in treating carcinoid recommend surgery (Carcinoid Tumor Surgery in my future?).  Oncologists are trained to believe that surgery should be the last option for cancer.  Carcinoid experts believe that surgery is the first/best option for carcinoid tumor.  After all, even though tumor growth is slow, it’s growth and metastasis can cause death just like a normal cancer.  PLus carcinoid tumor generate a mix of endocrine fluids that over time can destroy the intestines, heart valves, liver and other organs.  Tumor removal (both primary and metastases) statistically seems to both lengthen the expected life of the patient and lengthen the time to progression of the disease and the amount of time lengthened is measured in years!  Even when not all tumor can be removed (the surgery is then called debulking) or found, these statistics seem to hold.  Some patients are inoperable but there are other treatments available. (Some are told they are inoperable, then they go to a clinic specializing in carcinoid and get surgery!)

Therefore, I have coined a new term for “watch and wait”.  We should call it “Ambulatory Hospice”.  In  view of the experts opinions above it seems to me that we are watching the disease slowly kill the patient and merely treating the symptoms to keep the patient as comfortable as possible.

In my case, I will discuss and review the scans in person with my oncologist the second week of November.  Since I had major surgery this year and my doctor is not “aggressive” on treatment, no major treatments will be undertaken for a while, at least until there is some progression.

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5 thoughts on “Watch and Wait for Carcinoid Tumor

  1. After reading your information, my heart goes out to you and I hope 2014 will bring more positive results. I was diagnosed with Stage 3 Carcinoid Cancer in August, 2012. After a colonoscopy, they found a malignant tumor in the Cecum colon which required immediate surgery. I was told there was no chemo or radiation available for this type of cancer so follow up with CT Scans and Octreoscans was the only option. I was blessed and lucky because everything showed up negative with no cancerous hormones or spots. However, I was also told that this could come back and annual scans are really the only way they can give a clear picture on recovery. I can only suggest that if you are comfortable with your Oncologist and feel that he/she is doing everything possible to monitor the activity, then we have to trust their opinions and wait until the Octreoscans or CT Scans show something that requires other attention. My heart goes out to you and wish you a speedy recovery. This cancer has such a Jeckyll/Hyde personality which makes you wonder with every pain and bowel change if there is really something wrong. Stay strong and know that there is someone out there thinking of you!!!!

  2. After reading your above I urge you to go see Dr. Wolin at Cedars Sinai at the Cancer Institute. He is one of two Dr.’s in the country that specializes specifically in carcinoid cancer and I am under his treatment. I was diagnosed with Stage 2 in Feb of this year with two polyps in my colon. At the time of the resection I had 5 malignant lymph nodes then found a tumor on my liver. Do to the slow growth which is the nature of this cancer it is thought that I could have had this for some time for it to have reached my liver (after already having 3 colonoscopies!). Since my tumor had not spread I was able to have a liver resection and have it removed. Regardless of the removal, Dr. Wolin and his team uses Sandostatin as a drug which is proven to help prevent the growth of the tumors and in many cases shrink or get rid of them. I am on that drug now in order to help prevent the growth of any live cells and have a CT scan and MRI every 3 months. The only side effect is gall stones, so I had my gall bladder removed at the same time. He is the best and knows what he is doing. He never believes in the Wait and See approach as this can be life or death. If you look at any good symposiums or groups, he is always as the forefront in research and also is a very nice man. His team of nurses are very good too.

    1. Thank You Marilyn,
      I am familiar with Dr. Wolin’s work. I have been on Sandostatin LAR for over two years. It did cause gall stones and I had my gall bladder removed when they removed half my liver and the tumors in it.

      Thanks again,

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