- It is a large multidisciplinary system. I believe they may be a bit more conservative than some of the other carcinoid cancer treatment centers.
- They have a large neuroendocrine tumor program.
- They have a reputation for an emphasis on patient care in addition to research.
- Last year, I saw Dr. Kulke and Dr. Clancy speak at a conference sponsored by the New England Carcinoid Connection (see blog post from June 11, 2012). I was impressed with their knowledge. I also met some of their patients at the conference.
- It’s not that far from New York City.
I had two more appointments with Dr. Chan and Dr. Clancy, one in February and one last week. Dr. Chan showed me an area of my abdomen from a CT scan that showed the large tumor already causing an indentation in my small bowel. She said that they would normally not do surgery on an asymptomatic patient but since this tumor was already pressing up against the small bowel, any tumor progression could cause a bowel obstruction. She also mentioned that the median time to progression for Sandostatin LAR users in the PROMID study was 14 months and that I have now been on Sandostatin LAR for over 24 months. The combination of these two factors was the concern in my case.
Dr. Clancy agreed with Dr. Chan and said that he normally wouldn’t do surgery on an asymptomatic patient, but that my large tumor (10x8 cm) pressing on my bowel, should be removed because any progression could cause a bowel obstruction. He said that it was best to do the surgery while I was in good health and that the procedure would be much less complicated than if I had it done on an emergency basis after a bowel obstruction. Dr. Clancy added there is a near certainty of future problems if I don’t have the surgery. The surgery he is proposing will remove the large tumor, another large (6x3 cm) tumor in my pelvic area as well as some of my small intestine, affected lymph nodes, gall bladder and maybe my right colon. Much of this would depend on what he encounters during the surgery. He is quite confident that he will find and remove my primary tumor while operating on my small bowel. The doctor plans to remove around 80% of my tumor load. The surgery would last 3-4 hours. Recovery will take about 6 weeks. This is not different from what I heard from Dr. Liu and perhaps what Dr. Warner was trying to tell me. Dr. Clancy seems very competent and concerned with quality of life issues after this surgery. The surgery would be at Brigham and Women’s Hospital (BWH) in Boston.
This is a very difficult decision for me. However, I am finally seriously thinking about it. I have not scheduled it yet and I think I may wait until September to have this surgery unless someone gives me a good reason why I need to do it now.
I am very relieved to find doctors that I can talk to, who listen to me and that I feel comfortable with. Both Drs. Chan and Clancy are smart, compassionate and punctual and listen to my questions and concerns. It’s a welcome change.