Once the cancer starts, it grows very slowly, sometimes for ten or twenty years before it actually begins to cause any side affects and I have no idea how long mine had been hidden. What I do know is that it was found in 2001 due to a complete small bowel obstruction and had grown to 1.7cm at that time which about twice the size at which they generally begin to metastasize. My best guess is that the cancer started growing about the same time I started grad school in 1990 and has been growing very slowly since that point.
Once the cancer metastasizes, it usually stays in the abdomen, preferring to affect any nearby tissues. It frequently goes to the liver, and often ends up clustering itself around the mesenteric lymph nodes which is exactly the course my cancer took. When it metastasizes, that is when it actually begins to grow much faster and bigger. No one really knows why (yet) but it may be that the soil where the cancer first sprouts is not very fertile and the places it goes to are much more accommodating. This is why I have had 3-4cm tumors throughout my abdomen, even though the primary was quite small and likely would have stayed that way.
Another reason B is for Bowels is the diarrhea that carcinoid syndrome brings with it. The tumors act like the neuro-endocrine cells from which they were formed and generate all the signals that those types of cells generate. However, there are now so many more of them and they often act in concert, flooding your body with signals such as "Open the blood vessels" or "Empty the Bowels NOW" and in such volume that your body behaves oddly. These actions can be somewhat controlled by some drugs such as Sandostatin but there is only so much you can do.
Finally, B is for Bowels because the tumors regularly cause obstruction and ischemia in the bowels. For me, this has happened four times so far. The tumors have bound up the small and large intestines to the point that nothing can pass and this has lead to dramatic weight loss. The tumors have further impinged on the superior mesenteric vein, preventing blood from getting to the intestines so that they can do their work of digestion.
Of course these last two reasons mean I am continually worried about my bowels. If I am having too much diarrhea, I am frustrated at the bathroom time required and the interruptions to normal life. If I am not having much diarrhea, I begin to worry that I am starting to obstruct again and that I will be back on the OR table for another extended laparotomy. Right now, I am in the later camp and am stressed that things are starting to obstruct and don't know how I will deal with yet another 12hrs of surgery and 8 weeks of recovery.
Bowel obstruction is difficult to diagnose in some respects. There are some standard symptoms but those symptoms could be any of a number of other things as well.
- You will generally have a loss of appetite (Hmmm, that could be my kidney failure).
- You will have abdominal pain (have had that for 13 years from the diarrhea and other).
- You will sometimes throw up indigested food (not having that currently but it sounds like just being sick).
- CT scans work well as long as you can use contrast (can't due to my kidney failure).
Of course, once it does obstruct, what do you do? Usually it requires some fairly urgent surgery but there aren't many surgeons willing to go into an abdomen with as many adhesions as I have. If I wait too long, I get weak and surviving/recovery from surgery will be all the more strenuous. And, of course, there is the voice in the back of your head saying that maybe if you ignore it, it will just go away.
October is 13 years since my first laprarotomy and I have had them again in 10/2003, 1/2010, 6/2012, and 11/2012. I would really like to get another year or more before having a surgery that takes me out for months.
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