Hello all and happy Friday! I'm scheduled to have a panproctocolectomy this day week, removing my entire bowel, rectum and anus, because of cancer and severe dysplasia found in a routine colonoscopy. I was offered a choice of this or a colectomy, where they would only remove the dodgy section of my bowel. I made the decision to have everything removed quite quickly. I have Lynch Syndrome and tyoe 2 diabetes, increasing the risk of colorectal cancer on parts of my bowel and rectum if theyre left behind. Some family and friends think I made the decision too quickly, and that I should have chosen to just have a colectomy first, and have the panproctocolectomy at a later date, if and when it became necessary. My rationale is that Id rather remove everything now, to reduce the risk of my rectum or remaining colon developing polyps or cancerous calls. Could anyone please offer me their wisdom and thoughts on this?
Hi Mat C and welcome to the group.
I had a different surgery, but I recognise what you’re saying about risk and why you’ve made your decision. When I was having my operation, which was a total pelvic exenteration, my colo rectal surgeon saw my scans and told me he could save my bowel-there was no cancer at all there, just some damage from radiotherapy. I was having everything else removed-bladder, vagina and reproductive system, and I told him to just take my bowel too. He was very surprised, as no-one had asked him that before!
My thinking was, I would be going through huge surgery and why would I leave something where the cancer could come back later? I’d already had my cervical cancer spread all over my womb and bladder, so leaving my bowel when everything else was gone seemed a no brainer for me. I was having a urostomy so why not 2 bags?
My decision was instant-take it all, reduce my risk, and I’ve never regretted it. If the cancer had come back and invaded my bowel, my chance of having further surgery would be gone. It’s all very well for others to say you should have done something different, but it’s your body and your decision-no-one else’s when they don’t walk in your shoes.
I didn’t have my anus removed, so I don’t have a Barbie butt, but I had my surgery 4.5 years ago with no recurrence, so I’m happy with my choice and what I did. It was a small price to pay to still be here.
Your surgery is a big one, but I completely understand why you’ve chosen this option. I hope everything goes well for you-recovery can be difficult but for me, making the choice I did was SO worth it.
Sarah xx
