Four weeks ago tomorrow, I entered the hospital to have carcinoid metastases removed from my liver and to have my gall bladder removed.
Why? Data from carcinoid specialists clinics gives good evidence that even if you can only debulk (reduce) the tumors or certainly if you can remove the tumors, the patient’s life expectency could change from 40% chance of 5 years to 50% chance of 10 years. The time to disease progression (more tumors, more symptoms etc.) could change from 24 months to around 5 years. All this without even finding and removing the primary tumor. If you can find the primary it is better. These are compelling numbers if you are the patient like me.
So, the surgery removed half my liver and only the large tumor. The two smaller tumors were left in place. They also removed my gall bladder because the drug that I am injected with every 3 weeks (Sandostatin) causes gall stones or sludge in the gall bladder at least 52% of the time. An MRI had disclosed that I had all that after two years on Sandostatin. Knowledgeable surgeons almost always remove the gall bladder of a carcinoid when they do liver surgery even if it is healthy just to prevent a second surgery later. The surgeon also had some time to search the upper part of my intestines for the primary… No Luck. The whole thing took a bit less than 6 hours. His comment to my wife after the surgery: “Now he might die of something besides carcinoid.” He cannot know that but it makes us feel better.
How am I? I have reduced the narcotic pain killers by about half. Although the last couple of days the need has increased again. Probably because I walk two miles every morning the past week (the doctors love this). I take one or two one hour naps every day and sleep at least eight hours at night. A few days ago I was allowed to quit using oxygen all day as I had been. They just want me to keep it with me in case I need it. I find that I can do no more than one social thing in a day or I feel sick the next day. For instance if I play with our grandson Charlie for an hour and go out to lunch with someone, I will be sick. If I go to coffee with someone and meet with other people later then I will feel sick. I need to budget my time. From time to time I get severe heartburn, probably because the gall bladder has something to do with processing fatty foods. I can drive now but I cannot drive or ride for a long period of time because the bouncing of the car will cause pain in my liver.
Blood tests two weeks ago show that all the measures that I had high (seratonin, chromogranin A, gastrin) are now so low that they are below the recommended range. This makes some sense since the large tumor analysis after removal showed that it was dead in the middle from the chemoembolization two years ago, but quite active on the surface. I’m glad it’s gone. My oncologist and I are changing the Sandostatin injections from every 3 weeks to every 4 weeks just to see if the low numbers mean that I need it less for symptom control. I would not quit it altogether because a study last year showed that it stops tumor growth in at least some cases. I need all the help that I can get.
I have a lovely scar across the top of my abdomen. My normal doctor says that it looks like stuck a scalpel in on the right side and just pulled it across until they hit a bone. Quote from him: “Wow! That’s major surgery!”. My response: “I was aware of that.” The incision site never really hurt much but did itch until they took the 44 staples out about a week after I left the hospital.
I am told that recovery is at least three months maybe up to six. So I just have to wait it out.
It will be September before I can bike ride or fish.
My love and thanks to all who thought, meditated, and cared for me through this.