Don’t want to lose anus

Hi Jen and all, I was diagnosed with mid-lower rectal cancer in October and finished 6 weeks of radiation and xeloda at the end of January. The tumor was staged as T3 with no lymph node involvement yet and the stage overall, like yours, was IIa. I had my MRI Monday and met with the medical oncologist on Wednesday. I too have been very anxious about the surgery that is the standard next step for this cancer. I was amazed to find in my appointment on Wednesday that my tumor is completely gone and that there appears to be no lymph node involvement. The next step is an endoscopy from the surgeon on March 10 to verify the status of my cancer. If I have indeed had a "complete response" to the CRT, meaning the cancer is gone, then I may be a candidate for a "watch and wait" protocol. This would mean careful surveillance over the next couple of years with the possibility of avoiding surgery. There may be additional chemo to ensure that there is no distant spread of cancer. If they find residual cancer, they will have to do the surgery.

I share this to give some hope as to how effective the chemo-radiation treatment can be. I know that it is not always this effective, but it can be. I've been taking this journey one step at a time and that feels necessary. Every cancer is different and the protocols need to be evaluated each step along the way.

I also completely relate to how scary the thought of permanent change to your body is. But I do have faith that if need be, others have travelled this road and I will just have to follow and adapt as so many have. Agreed with all that finding a team that really listens and thinks through options with you is important. I found that to be true of my team at Penn Medicine the more we actually got into the treatment and the care truly began. Holding you in the Light, as Quakers say, for this scary journey, hoping for the best possible care, peace of mind along the way and the best possible outcomes.

Finally, just a note that the chemo-radiation was not easy, but definitely doable. Hope this is helpful- with you in spirit.

Rich

I am happy to hear that your cancer is gone. That gives me a lot of hope. I was diagnosed with anal cancer caused by HPV. I had 6 weeks of radiation combined with 6 weeks of chemo. My chemo was Xeloda and a one time infusion of Mitomycin. What chemo did you have? I am due to have avCAT scan in March 6th to find out if treatments worked. It’s been an anxiety filled few months. I feel better than I have in months, except for the fact that my sphincter muscle has stopped working. I suffered from radiation enteritis for more than a few months. I could barely eat anything and I won’t even mention the terrible pain from all the burns in my pelvic area. Now I am able to eat, but have no control over my bowels and have to wear heavy sanitary pads. I don’t know if that will heal or require surgery. Have you had any of those issues?

I was diagnosed with anal cancer last summer. My treatment regimen (2 rounds of chemo with mitomycin and 5-FU plus 30 radiation treatments) worked very well. The tumor has shrunk way down, but of course they're still doing PET/CT scans every 3 months to check progress. I've seen 2 different colorectal surgeons (one with UC Davis,) who've told me the same thing: once the tumor is in the anal canal, there is no possibility of surgery unless it's a colectomy.
After all the pain I've been through, I'm honestly not too stressed about it. If the tumor is still there later, I think a colectomy would resolve a lot of pain. My tumor was staged 3C and had grown to 7 cm by the time I started receiving treatment. The fact that it has shrunk down to practically nothing is amazing to me! But we'll be watching it to see if it completely resolves.

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.

So sorry to hear this, will msg you.

@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/

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

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.

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.

Have you gotten a second opinion?