Monster mutations

So there are two main genetic mutations that cause colon cancer in extremely young people like me, FAP and HNPCC. FAP basically turns your colon into thousands of polyps, and since I only had two polyps (one which had turned into my giant tumor, and one that was tiny), we are confident I do not have FAP. HNPCC, on the other hand, is typically diagnosed from a family history of colon cancers or other abdominal cancers. My closest relative with colon cancer is my dad's cousin, who was diagnosed at over 60 (not indicative of HNPCC), and the only other abdominal cancer in my family is my maternal grandfather's pancreatic cancer. Also, HNPCC-related colon cancers nearly always occur in the ascending or transverse colon, and mine is low in the descending colon. So despite my desire for genetic testing, my medical oncologist said she felt confident enough that I didn't have HNPCC that we didn't need to test for it before surgery.

Very often, if you have HNPCC, they will surgically remove the entire colon, because the risk of recurrent colon cancer is so high. The second most common cancer associated with HNPCC is endometrial cancer, so they often do hysterectomies as well. Sometimes they also take out the bladder and as much of the soft tissue as they can, to remove everything that you can possibly live without that might become cancerous.

But my oncologist had convinced me that I didn't have it and so we didn't need to test for it. The genetic tests take about 6 weeks to come back. I am nearly always in favor of more information, but she has proven herself to be so extremely competent (see the incident with the clot) that I just trusted her.

The surgeon who did my ovarian transposition (the surgery to move my ovaries up out of my pelvis so they didn't get fried in the radiation) said that if I were his wife or daughter, he would want me to have a hysterectomy at the same time as my major surgery. The rationale for this was that there's an increased risk that I could develop secondary uterine cancers as a result of the pelvic radiation, including a nasty form of incurable sarcoma, and my uterus is useless for childbearing, so why not just take it out and remove that risk. Additionally, the recovery time from my surgery would be no greater with a hysterectomy than without, and performing a hysterectomy later, after my pelvis is full of scar tissue from this surgery, would be much more difficult and time-consuming (though not impossible). The first time I heard this argument, it made a lot of sense to me. I'm pretty deeply risk-averse, and I think cancer has only made me more so, so why keep my uterus around if it's not going to serve its intended purpose and makes it more likely I'll have to go through this nightmare of cancer treatment again.

But then I went back to my medical oncologist and she said, essentially, surgeons like to cut out organs, of course he wants to remove your uterus. And she emphasized that everything he said is 100% true, but that it is highly unorthodox to perform a prophylactic hysterectomy on a woman of my age. She said her job was to cure me of my colorectal cancer, while leaving me as intact and normal as possible, and removing my uterus wasn't necessary and why not leave me as whole as we can. During radiation, I asked my radiation oncologist what he thought about a prophylactic hysterectomy, and his response was that he has treated thousands of patients for colorectal cancer, several of them young women, and he doesn't know of a single patient who had a hysterectomy without any evidence of disease or metastasis. So after that, I was fairly convinced that it was unnecessary. I'd also done some reading, and there is a small but real chance of fairly severe sexual dysfunction in young women following hysterectomy, which I'd like to avoid if at all possible.

But then on Wednesday, my surgeon announced that she feels strongly that I should have a hysterectomy. And she had pulled my original tumor biopsies from MGH (Mass General Hospital) to have her pathologist stain them for some specific markers (MSI) that are indicative of HNPCC. Prior to that revelation, we were confident I did not have HNPCC. But apparently at some point a test had been run that showed that my tumor was APC-negative, which dramatically increases the chances that I have HNPCC. So much so that my medical oncologist now agrees with my surgeon that even if the marker tests come back negative, it is still a good idea for me to have a hysterectomy.

And apparently even if the MSI-marker tests come back negative there is still a very small chance I could have HNPCC. If they come back positive, it is highly likely that I have HNPCC.

So my medical oncologist set me up with a genetic counseling appointment this afternoon (in an hour, actually) and put a rush on the HNPCC test. So we might have that back in a week or two, rather than having to wait the normal 6 weeks. I suck at waiting.

So it's back to the hospital for me! Whee!! And hopefully we'll hear about the MSI-marker results soon. I don't want to have to continue to deal with this uncertainty through the weekend. But at this point, I guess it almost doesn't matter. Because the MSI-marker tests aren't conclusive in either direction. And both my surgeon and my medical oncologist agree that I should have the hysterectomy regardless of what the tests say. I still just suck at waiting.

And I thought the scan results were the only thing I had to be worried about. HA! Cancer: full of freaking scary unknown unknowns.