“I do not despair of carcinoma being cured somewhere in the future, but this blessed achievement will, I believe, never be wrought by the knife of a surgeon” – Siddhartha Mukherjee - The Emperor of All Maladies
On Tuesday, I had an appointment with Dr. Warner to discuss my treatment options. Once again, he emphatically stated that I needed to have surgery. His analogy (one of several he offered) was that ”I was sitting in the living room watching television while the house was on fire”. Like Dr. Liu, he said it was best to do the surgery while I was still healthy. I still need to do some diagnostic testing before anyone will even begin to tell me exactly what the surgery will encompass.
I was talking to one of my carcinoid buddies who is going through a similar situation in determining her need for surgery. She went to a carcinoid specialist who told her she did not need an operation. That doc’s analogy was it would be “like killing the one cockroach you see in your kitchen but leaving the thousands of others to remain and continue to reproduce”.
I guess doctors like to use analogies to articulate the rationale for their opinions.
Dr. Warner asked why I had seen so many doctors. He stated that it would be easier if I settled on one so all the tests and procedures could be done in one place, in an integrated way. I explained that my first doctor was entirely inappropriate, primarily due to his attitude. He was fine with Sandostatin and a “watch and wait” plan, but his arrogance and inability to communicate effectively with me ruined our working relationship. I then went to Dr. Warner for an opinion and he sent me to Dr. Ratner, who works with him. I traveled to Tennessee to see Dr. Liu because that was where I could get the 68-Ga scan, which was unavailable locally. Dr. Liu also believed surgery was necessary. Finally, I had a written opinion compiled entirely from my records. This is from an organization called Best Doctors, offered as part of my healthcare benefits at work. This particular opinion was from Dr. Edward Wolin in Los Angeles. He did not think I needed surgery as long as I was stable on Sandostatin. It’s not like I enjoy going to all these doctors but there seems to be some difference of opinion as to how I should be treated. I told Dr. Warner that I need to gain some trust with a doctor before I do something as major as an exploratory surgery. He seemed to understand that and said we should take this one step at a time.
Personally, I have a fear of a big abdominal surgery due to the relatively recent death of a close relative from sepsis - 30 hours after a bowel resection for a non-life threatening condition.
I will continue to work with Dr. Warner and Dr. Ratner on the diagnostics needed to determine the best treatment for me. The psychological issues and fear of death/collateral damage as consequences of an extensive abdominal surgery are big hurdles to overcome. Stay tuned.
