There is a great scene in "Tommy Boy" - one of the funniest movies of all time - in which Tommy (a sweet brake pad salesman who couldn't sell lemonade to a man dying of thirst) convinces a disgruntled diner waitress to re-open the kitchen so that he can have some chicken wings. His friend Richard watches in awe:
Richard: That 180 you just pulled on the waitress, why can't you sell like that?
Tommy: I'm just having fun. If we didn't get the chicken wings - so what? We still got that meat lovers pizza in the trunk.
Richard: No, you relaxed. That is what selling is all about.
After this pivotal scene, Tommy remembers "chicken wings" whenever he meets a tough client, and becomes a one-man brake pad selling machine.
Gary and I walked into Memorial Sloan-Kettering (MSK) confident and relaxed. If I didn't like what Dr. Nash had to say, so what? I already had a surgery date at Robert Wood Johnson (RWJ).
Analogy = RWJ: Meat Lovers Pizza :: MSK: Chicken Wings
My Sloan-Kettering appointment took about 4.5 hours, and basically consisted of a series of exams by a nurse, a surgical fellow, and Dr. Nash (including a sigmoidoscopy). After all of the exams, Dr. Nash sat down and answered our questions:
Why does the colon have to be removed? We finally understand why a portion of the colon needs to be removed - there are a series of lymph nodes close to the appendix that need to be removed, and in order to do that you have to cut the blood supply that runs to the right portion of the colon - and you can't leave a dead organ inside of you.
What is the difference between Carcinoid Cancer and Goblet Cell Carcinoid? The leading paper regarding Goblet Cell Carcinoid came out of MSK, they do not present the same way in pathology - and look quite different; so if the pathology from RWJ indicates Carcinoid Dr. Nash didn't see any reason to think that it was Goblet Cell...but their pathologists would look for it.
Why didn't my tumor show up on my March CT scan? Dr. Nash actually personally reviewed the CT film and confirmed what Dr. Maloney said - the appendix is obscured by folds in the colon.
How do you die from Carcinoid Cancer? There are several ways, but destruction of the liver is most common.
How soon do I have to have the right hemicolectomy and are there any other options for treatment? Dr. Nash confirmed chemo doesn't work on this type of cancer so it is important to surgically remove everything with a potential of cancer - starting with the lymph noids. Dr. Nash confirmed that a right hemicolectomy was absolutely necessary for any tumors over 2 cm big. However, Dr. Nash disagreed with RWJ on one major point - the timing of the surgery. Dr. Nash said he wanted to wait until I was more fully healed from the first surgery - and when I mentioned that I wanted to wait until after school was out, Dr. Nash said that was absolutely appropriate since the cancer was slow growing a few weeks would only make a negligible difference in metastasizing.
Do I need an Octreoscan? No. Dr. Nash does not feel this is a good test for my case because it is mainly used for confirmation of Carcinoid, and we already have that confirmation. The better tool for follow up testing is CT scans.
How long have I had this cancer? Years.
Is there any chance of developing Carcinoid heart disease? No. I do not present symptoms of advanced Carcinoid Syndrome.
What is my follow up care? Since there is no cure, and no other effective treatment other than surgery, I will have regular CT scans for the rest of my life, followed by surgeries should any tumors reappear. I could never get another tumor, or I could get one in a few years - or in ten years, it's completely unpredictable.
Dr. Nash scheduled surgery for July 19th, and I signed an intent form - which is not a contract - to reserve the operating room. He said if I decided to go with RWJ, that all I had to do was call his office and they tear up the paper.
After a lot of conversations with family and friends, going over pros-cons with Gary, and trying to figure out where my emotions were re: comfort level, I have decided to go with MSK. In short, it makes sense that if they are going to do my follow-up care that I have the surgery there. Also, if anything goes wrong, they are the premier institution in the country for Carcinoid Cancer treatments.
New Time Line:
Cancel RWJ Surgery
Cancel CT (Dr. Nash said it's unnecessary)
June 25th - Colonoscopy (reschedule to another date in June so that I can attend graduation of my 12th graders)
July 8th - Pre-Surgery Testing at Sloan-Kettering
July 19th - Surgery by Dr. Nash at Sloan-Kettering