Don’t want to lose anus

Hi- I understand your concern. My husband's rectal tumor was 5 mm from the anal verge. For him, finding the right surgeon was key. Due to his tumor location, a permanent colostomy seemed inevitable. However, we were fortunate to be put in contact with a surgeon who was participating in a clinical study for a technique this surgeon's father had invented. Although my husband was this particular doctor's first patient for the study, countless patients before him had had this surgery and this surgeon teaches this technique and procedure internationally. The result was he was able to preserve his sphincter and created a new rectum for him by pulling down his colon. While his bowel function is not 100% typical/"normal" the doctor describes it as functional. A permanent colostomy was avoided and for my husband that was good enough. You can read about the clinical study here and perhaps this can start a conversation with your doctors about what all of your options might entail. This post will not allow me to reference the link to the study- but if you go to clinicaltrials.gov and then in the "other terms" search field type: NCT03144765, it will take you to the study. Hope this helps

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

I am so glad to hear this! I would love to hear more!

Have you gotten a second opinion?

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.

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.

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

@jenmo, anus-sparing surgery may not be possible in your situation. If you would like to get a second opinion from Mayo Clinic, start here: http://mayocl.in/1mtmR63

I know you wish to avoid a colostomy and may not want to hear this right now. People live well with colostomy. It's an adjustment for sure. But it doesn't need to upend your lifestyle.
- Ostomy Support Group https://connect.mayoclinic.org/group/ostomy/

So sorry to hear this, will msg you.

I too have anal cancer caused byHPV. I finished six weeks of radiation and chemo in early Dec. I am anxiously waiting for a CAT scan on March 6th to know if the treatment worked. My tumor was very large. My doctor insists that I cannot have surgery to remove tumor if it is not gone.