Don’t want to lose anus

Thank you. I’m aware of all this but people with far less margins than me have had surgeons attempt to figure out other ways and do so successfully. Im only stage 2a. I’m not unaware of how this works. And my experience and perception of not receiving other options and efforts is also valid.

I was diagnosed with anal cancer in april. My cancer was HPV related and that responds to chemo and radiation very well. I saw a surgeon and he said he'd only do surgery if treatment didn't cure the cancer. I did 6 weeks of radiation and 2 weeks of chemo. Jumping to Sept I had a sigmoidoscopy (sp) and the cancer is gone. It sounds like you need a second opinion .

Colleen, I asked again and read these comments to the surgeon who said there’s no hope because the tumor touches or abuts the internal sphincter and they’d have to remove it and give me a permanent colostomy. I don’t understand. This is the head of colectoral surgery. How do I get a second opinion from one of the surgeons who were mentioned here or otherwise

Welcome @jenmo. I hope you saw the hopeful post from @trishdep189 who also had a tumor removed from the sphincter muscle with successful reconstruction and full functionality.

Jen, when will you have surgery? Has your surgeon talked about reconstruction options and likely outcomes with you?

Hi
Hoping all turns out well for you
Just wanted to explain a point. It’s not that your doctors are insensitive to your needs or that it’s easier for them to put you on the bag, it’s your disease stage that dictates the type of surgery most suitable for you. If your tumor is malignant then the surgeon must remove it completely to avoid recurrence. They must remove the tumor with a safety margin around it which is very difficult to achieve and still keep your sphincter intact since tumor is only 1cm from sphincter. I’m sure your doctors have your best interest in mind and will always seek the best management option for their patients, however sometimes this is out of their hands like in your case.

I haven’t been able to see the surgeon yet because she’s only in the office one day a week and we got COVID on our appointment day so now it’s pushed out weeks again. And every day seems more likely it will grow and I’ll end up on the bag. They haven’t discussed anything with me other than the oncologist saying she suspects the surgeon will want to do neoadjuvant chemo radiation first prior to surgery. And their attitude appeared to be one that makes me fear they’ll just put me on the bag as a matter of routine because they haven’t been responsive or sensitive to my needs at all including that I have a small child at home that I’m the sole caregiver for (and thus the chemo will affect them). Anyway they haven’t mentioned that they will try to save or spare or repair the sphincter just “it’s hard” so the bag seems likely because it’s easier for them 🙁 this is a major cancer research hospital too

They said they want to do APR surgery and give me a colostomy bag permanently but will let me do TNT radiation then chemo to see if I can get NED otherwise it’s a colostomy for me. It’s touching the sphincter at the edge but not on or in the sphincter and this is coming from the head of colectoral surgery at a major teaching hospital. I don’t understand why they won’t try without a colostomy

Please reach out to me. 42 year old Mom of 3 here and Mayo was able to cut mine out very near sphincter with robotic surgeon and colorectal surgeon working together to do so. So far, no colostomy. Doing my darkest to keep it that way. I also did rectal and pelvic radiation and chemo. No easy thing! But I’m doing well a year later.

I had my surgery in Stamford CT. I had. Nodule that they thought was at risk for but not cancerous so she scheduled the surgery to remove it. Turned out it was a tumor and she had to clean the margins, and due reconstruction of the muscle. Normally they do not remove the tumor but treat with chemo and radiation. Why are they removing yours?