← Return to Rectal adenocarcinoma low in rectum: Should I get a second opinion?

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@cjay

First of all, I’m sorry for what you’re going through. I k ow it all too well - and the unbelievable anxiety and worry that comes with it.
I was diagnosed last year with the same, T3N2. I had 5 courses of intense radiation, then surgery April 10, 2023 for a LAR. I went into a temporary ileostomy for 6 months, then had the ileostomy reversed at the end of September. I had FOLFOX chemotherapy from May to August, and returned to work December 1. Last month my cancer came back as a local recurrence on the back wall of my vagina. The tumor was never found by the many scans I had, or even a colonoscopy in February. It’s fast growing and very low, below my resection site. I was told the only surgery would be removing EVERYTHING, and going into a permanent colostomy. I refused that surgery and I am opting for chemotherapy again instead.
I just can not do a permanent colostomy. I had many many issues with my sensitive skin and the adhesive causing irritation and constant itching.
Is there a reason you opted out of chemo?
Go to your second opinion, and ask about any immunotherapy you may be eligible for. Also ask about proton beam therapy. I’ve just learned of this from a friend whose husband has been going with success.
https://www.floridaproton.org/
Keep advocating for yourself and get as many 2nd opinions as you want!

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Replies to "First of all, I’m sorry for what you’re going through. I k ow it all too..."

Thank you so much for responding. I tried Xeloda for 3 days ,did not tolerate it well . I don't do nausea well. To me it's poison. My mom had Hodgkins lymphoma. Was diagnosed when I was 12 ,she died when I was 17 from complications from the ABVD and MOPP . I watched chemo slowly and painfully kill my mom. When it came to me. I am a very active person who rides 4 wheelers and am outside all the time. I also have adhd so sitting still or being sick in bed all day I can't do. I told the doctors that this is about saving my life and if at any point the treatment jeopardizes that quality of life that I won't do it. So yeah after 3 days and as sick as I got I stopped.
Now the colostomy ,most people I talk to to about it said it's really not that bad. That I will still be able to do everything I do. The recovery from surgery will be the only down time which I imagine I'll be pretty medicated. So I've accepted it ,I think. The side effects from chemo are permanent alot of times. I had true beam radiation . Not sure if that's the same . I tolerated it beautifully. No side effects really at all accept being tired. Only issue is they checked my tumor markers last week and it went up. From 5.1 to 5.6. So did the radiation do nothing. It had to have done something because the awful bleeding has stopped completely. I am a smoker which apparently can make the tumor markers high anyways. I go in Wednesday to the surgeon and I'm sure he'll order new scans. Go from there. My tumor is so low you can feel it just laying your hand across my perineum. There's a little lump. Surgeon said it's the lowest he's ever seen .