Still Terrified

MAbound said:

I always seem to have more questions

Thanks for taking all the time you have for me Maureen. I've printed out the pdfs you sent me. It took me awhile because I'm a newbie to how to work with dropbox. I'll read them later tonight, but they look very interesting.

I realize that I'm getting a bit personal, so feel free to ignore this, but I am curious about why they are attributing your issue with small bowel obstruction to the surgery rather than the radiation? Adhesion formation in bowel is also a chronic side effect of pelvic RT as well as from surgery. Did you by any chance have any GI studies with Barium to identify where the adhesions are to help with what to attribute them to? How is it dealt with when you have an obstruction? A week must seem like an eternity when you are in what I imagine must be a lot of pain! I guess I'm kind of trying to understand what it must be like to be living with this issue and thus all of the nosy questions. 

Now I'll try to provide good answers.  The conclusion that my intermittent partial small bowel obstructions are surgery-related is mine, not that of my doctors.  I can't say with 100% certainty that radiation could not have played any part, but after thinking about this issue for many years, I concluded that in all probability I would have experienced this side effect even if I had not had the radiation, due primarily to the nature of my surgery.  Because my gyn-onc saw some troubling findings when I was on the operating table, he performed a radical hysterectomy and pelvic and paraaortic lymphadenectomy.  He explained that my surgery ended up being much more extensive than he typically performed for EC.  Over the years, I've spoken to women who also experienced SBOs after abdominal surgery that was less extensive than mine and who didn't have pelvic radiation.  I seem to recall seeing the statistic that the cause of approximately 60% of SBOs is abdominal surgery.  Therefore, I came to the concludsion that given the extent of my surgery, even absent the radiation, I would in all likelihood have developed SBOs. 

I've made several trips to the ER, and in most cases the SBO could be seen either on plain x-rays or CT scans.  Sometimes nothing was seen, probably because the obstruction had begun to resolve on its own by the time I got to the ER.  Now I don't go to the ER unless the pain does not begin to resolve after the better part of a day, usually after I vomit to release the pressure caused by the obstruction.  I avoid the hospital to the extent possible because I don't want more tests or surgery unless the obstruction does not resolve on its own and becomes life-threatening.  I've had enough obstructions over the pasts 17 years to know what they are and in most cases the severe pain begins to subside after I vomit 5 or 6 times.  I've been admitted from the ER a few times, and the standard treatment has been nothing by mouth for a day or so and intervenous hydration, with IV pain medication, as needed.  Typically, I'm in severe pain for about 12 hours, but an SBO leaves the bloated area close to the obstruction very sore for several days.  I'm often extremely tired after the ordeal, and not back to normal for the better part of a week.  After I've rested and can eat and drink again, I'm as good as new, and it's as though nothing ever happened. 

Hope this answers all your questions!

Maureen

beccabtown said:

My own view of the possible

My own view of the possible long-term side effects of radiation or chemo is this (warning: blunt talk coming): Anyone with advanced or high-grade endometrial cancer is in a fight to be alive after two years--if we make it to five years with no recurrence of cancer, we're in a very small and fortunate group. That is the reality of our situation. Bargaining with our doctors over treatment choices won't change that. So getting there is the first step. For me it would not make sense to forego treatment now in order to avoid possible side effects down the road if doing so increased the chances that I wouldn't even live long enough to face those possibilities. I do worry about some long-term effects, lymphedema in particular. But I hope that if I'm still alive in five years and dealing with lymphedema every day I'll still be glad to be alive.

Given the development of new technologies, I would pay careful attention to the type of treatment used in evaluating any research on long-term effects.

I think that any Grade 3 endo ca is treated under essentially the same standard as serous, UPSC, MMMT, clear cell, etc. You should ask your doctor, but that is the impression I have from things my doc has said.

In the end, though, I agree that doing what you think is best for you is the thing that matters most. I hope you have support from family and friends to help you get through whatever you decide.

My head is reeling, no radiation, radiation, no to this chemo drug, no to that chemo drug. I can do the research to be informed but in the end if I don't trust my doctors who are expert in their fields, I am alone and I can't do this alone. So side affects or not, I need to know that I gave myself the best chance at survival from the get go because I want a life. I don't want the crappy side affects but like my chemo doc said, cancer does a lot better job at killing than chemo.