Hi, I'm new to the website. In honor of my diagnosis exactly two years to the day, I have joined the group! I would like to give a heads up for total pelvic exenteration, despite the severity of this operation.
I am a mother of six, aged 56 years on diagnosis. I was diagnosed after colonscopy two years ago, and given the prognosis that I would not live more than a couple of years, maximum. It was a stage IVb adenocarcinoma tumor of around 7 cm which had spread to local pelvic organs but not outside, and was "well defined."
After having one round of chemo to shrink the tumor enough to do surgery I then had to have an emergency diverting sigmoid colostomy put in because of fistulas (fissures) opening between the urinary tract and colon. There was no certainty this could be reversed. After a short recovery, I then had 4 more chemo treatments followed by a total pelvic exenteration (only part of the bladder was left). Thank God, the colonoscopy was also reversed. To summarize, it was extremely major surgery, five ops. in one - tumor removal, lymph node removal, removal of ovaries, uterus, reversal of colostomy. I live in Israel, and the major hospital where I had it done said they only do two or three of this type of surgery every year!
The pain was indescribable afterwards, even with epidural, and huge amounts of painkillers (and I have a very high pain tolerance normally). They get you standing almost immediately, and two and a half weeks later I was discharged home, in a wheelchair and very weak, and still on huge doses of opioids. It probably took another three months before I could walk short distances, and at least six months before I could attempt anything more than that.
However, a year and a half later, I am doing regular exercise (just started a gentle aerobics program for over 50s,) I walk, use an exercise bike, go up and down stairs, cook, and do all the domestic things I used to do. My oncologist is pleased so far... scans are clear.
If anyone is contemplating this operation, please reach out to me for specific details and I am happy to offer any help I can with the recovery process, support, or advice. As I say, the pain is unimaginable but for me, there was no alternative. It's not a walk in the park, by any means, but it may give you your life!
Be well, everyone. Look after yourselves - Shaina