I explained that I am having trouble finding a doctor who can clearly explain the treatment plans that might be appropriate for treating my disease and how they would affect my quality of life and survival. Specifically, I am trying to reconcile having a major exploratory abdominal surgery with a watch and wait approach.
In my business, we sometimes use something called SWOT analysis to evaluate opportunities and help make decisions. SWOT stands for strengths, weaknesses, opportunities and threats.
In a business situation, looking at all these alternatives can help arrive at a good decision. I am wondering if it is possible in some way to apply these factors or something similar when making a decision on how to treat my cancer. Perhaps considering simple pros and cons of the different treatment options would be sufficient.
My PCP is a gastroenterologist and does not have any experience or expertise with neuroendocrine tumors. He has seen some of my diagnostic test results but not all of my doctors are forwarding information to him. I explained the following to him, most of which he knew:
At this point I have an unknown primary tumor (which may be in my small intestine or pancreas) and many metastases. Most of these are not in my liver. Any exploratory surgery would not remove all the tumors but could reduce the tumor burden and might lower my serotonin/5HIAA levels.
The monthly Sandostatin shots have lowered my CgA levels from 25x range to 2x range. But my serotonin/5HIAA levels have not come down; they are still at 5-7 times the normal range.
I have no symptoms and feel excellent. I used to have very occasional flushing prior to starting Sandostatin treatment.
I have yet to determine if the primary reason for an exploratory surgery is:
1) To remove tumors so I don’t have a bowel obstruction or
2) To lower my serotonin levels so I don’t develop fibrosis
3) Some combination of 1 and 2
Despite my high serotonin levels, and the fact that my tumors may have been there for 10-20+ years, I have no symptoms of fibrosis. Symptoms of fibrosis include diarrhea and heart valve issues. Not all carcinoid patients get fibrosis – I read an article that said it occurs in approximately 40% of patients1.
My PCP thought that 40% was not necessarily a high enough percentage to justify an exploratory surgery if the objective was to avoid fibrosis. If the number were more like 80%, it might be more obvious that I require surgery. He thought that perhaps I might be in the 60% who might not get fibrosis because I’ve had the tumors for so long and don’t have any associated symptoms.
My PCP stated that I should definitely shop around until I find a doctor/oncologist that I trust and can communicate with. Ultimately I have to make the decision on the treatment that is right for me. He also reminded me that medicine is not completely science and that there is a lot of judgment involved. At this point I need more clarity and information before I proceed. It was a helpful appointment and a good sanity check.
1 The Oncologist 2008; 13:1264