Don’t want to lose anus

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 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?

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'm tagging @jenmo to make sure she sees your helpful post, @happygrandpa. Holding light and really hoping that the surgeon is able to confirm that you've had a complete tumor response and may be able to avoid having surgery at this time. I'll be anxious to get your update.

Rich, what help you manage the challenges and side effects of chemo-radiation?

Wonderful! Thank you. Congratulations!

Thanks for asking, Colleen. I had a few challenging side effects from chemo-radiation. First, I had some very painful bowel spasms, urgency and pain passing stools starting in the second week. The team prescribed dicyclomine and that did seem to calm the spasms. Ibuprofen was surprisingly helpful with pain overall.

Second, the skin burn from the radiation got very significant over time, reaching a peak the week or two after treatment ended. It got very painful to be in a car, to get in and out of bed, sitting in certain positions... The team had started me on moisturizing from even before the treatment started and about halfway through prescribed an ointment that was Aquaphor with lidocaine and that seemed to help. I'm happy to say that a month after treatment ended, my skin is mostly healed. It's so nice to have smooth, soft butt again! It's encouraging to see the healing capacity of the body.

Sidenote: throughout my treatment, people would tell me how good I looked. I joked to my wife that sometimes I wanted to say, "Oh yeah, wanna see my butt?" (I did not say that...).

Finally the fatigue and brain fog were a challenge as the treatment progressed and continued after for a few weeks. I have a busy job and a couple of times, I just cleared my calendar for a morning of peace and quiet at home. In addition to all the physical symptoms, going through these treatments, we are living our lives in two worlds, including a parallel universe of uncertainty and new concerns and worries. I think it's important to be gentle with oneself.

One instinctual response I had to this whole process was to withdraw internally, somewhat silently and invisibly to those around me. But I needed the internal quiet and space. It reminded my of what I felt naturally and unexpectedly after my mom passed away. A space opened up inside that was where my sadness and need to reflect was made possible. It was a private space that I think it's important to notice and make room for in your life when going through something like this.

Hope this is helpful. It was helpful to write it! Love and encouragement to all on this journey,

Rich

My husband just had surgery to remove tonsil and 63 lymph nodes from his neck around October 2022. I just found out yesterday that it was HPV related cancer. Now I’m having issues by my privates to anus my skin has turned white and gyn Dr did a biopsy on me a week ago. Won’t know results for another 2 weeks. This is freaking me out! My husband of 40 some years in our earlier years I didn’t know but he had a second hidden lifestyle. He’s had multiple affairs he was a drunk too! So but after 2nd rehab I he finally kicked the drinking. I finally after a year started to forgive him and slowly the trust came back. Since he had HPV does that mean I have it now? I just thought it was a rash that needs a steroid cream!!!

Where did you have this performed and what doctor?

I too had my tumor removed from my sphincter muscle in November. I had no chemo or radiation and my last scan came out clean. It took a bit yo heal but I have no issues with going to the bathroom. Hoping I will never have to go thru it again. My surgeon was in Stamford, CT and my oncologist in NYC at Sloan.

Hi, @amariewilkinson, I am diagnosed as having a tumor 1 .4 cm away from anus. Can you share your hospital and surgeon info? Currently I am offered neoadjuvant therapy before surgery, but I am not sure whether this is the best option. I am concerned about spreading. Thanks.