Worried this might be anal cancer

Thank you for responding. By this time I should know what kind of radiation I had. I don’t. I am seeing my radiologist this week and will ask. I am having my MRI this morning. My Ct scan was last week and results were good. I’m expecting to get good results from today’s scan. I’m looking forward to not having any tests hanging over my head for a year. Testing every six months weighs very heavily on the mind. The next step will be to fix this hernia that’s developed. It’s becoming very painful and large. Wishing you the best!

Thanks for reply Rio. Ongoing testing seems to be critical as cancer-causing hpv16 virus is not curable. I’m going crazy researching while waiting for surgery, ct and mri in a few weeks. I requested a Pap smear from my HMO as hpv16 frequently causes cervical (and other cancers). I’m 74 and was advised over 10 years ago that no further gynecologist exams were needed as I had 2 negative hpv tests and 2 exams with no precancerous cell changes. Now I have hpv16 and rare anal cancer??? I am primary caretaker for my life partner of nearly 50 years so I wonder if hpv16 lies dormant and undetectable until it causes cancerous cell changes. More research is needed on my part. Our life survival plans will depend on lining up all of the right kinds of tests for the rest of our lives. My goal is to feel as good as I can for as long as I can and to continue to plan potential next steps, if needed. 😊 best wishes for your test results.

BTW - ongoing gynecology exams are recommended in the journal of oncology for anal cancer patients.

Thank you celia16. Anonymous Posting helps me to keep a positive attitude while waiting for surgery and staging tests that will clarify path forward. I’m not ready to share diagnosis with out-of-town family until post surgery staging in early April. Glad to hear you’re doing ok.

I am on Medicare and have supplemental insurance. since proton radiation is now accepted by Medicare it was covered 100%. I also live in the Bay area. I went to California Proton center in San Diego. Loved my doctor. He said anal cancer was his favorite to treat. BTY unless things have changed in the last year, there are only 2 proton centers in California. U of Irvine says they have(I went there for a second opinion) , but don't actually (they are affiliated with ..)and neither does UCSD. There is one in Loma Linda and the one in San Diego. The doctor I had trained at Loma Linda. It's equipment is older since it was the only center for a long time. I was told by them that they did not it do for anal cancer (don't have the numbers) told the same at MD Anderson and Bethesda, and mayo. Don't know how to get the numbers if you don't do them. "gently" ,on this web site, said not to give up so I didn't.
I just had my 9 month PET scan as well as a special blood draw that shows HPV negative. No cancer tumor either. I did very little chemo. Not sure I would even do bother with it.
so sorry about your partner. makes it ever so much more difficult because you have to be in San Diego for 6 weeks. treatment is 5 days a week for 6 weeks.
found it hard to come home on weekends because of treatment (had to stay close to toilet) . Believe me that really is the worst thing that happens. But....You will get over it. no pun intended.
I understand that UCSF will be getting proton in a few years, but doesn't help now. I think it is still possible that you can have your tumor removed surgically and not require radiation or not a much anyway. I don't know. Mine was on my sphincter muscle. so surgery was not an option. If I can help you in any way, please reach out.

Hi there,
I am a 67 year old woman just diagnosed with SSC anal cancer. It’s in the anus and mesorectal lymph nodes. I’m still waiting a pelvic MRI and am in the process of getting second opinions T Fred Hutch Cancer Center in Seattle. The first week of April I will be meeting with an oncologist, colorectal surgeon, and radiation oncologist. It’s the radiation I find terrifying so I had started looking at proton therapy and found a place in San Diego. I’m curious what staging you were and if lymph nodes were involved with the proton therapy. I’ve read some mixed reviews with IMRT vs proton therapy so I feel I just don’t know enough. Any more info you can share would be appreciated.

See the following..... I believe proton therapy is preferred only when the cancer is very localized and difficult to target...

Proton therapy may be advised for anal cancer in specific situations where its unique properties can provide an advantage over traditional radiation therapy (like X-ray-based treatments such as IMRT). Proton therapy delivers radiation with high precision, targeting tumors while minimizing damage to surrounding healthy tissues due to its ability to deposit most of its energy at a specific depth (the Bragg peak) and then stop, reducing "exit dose" radiation.
For anal cancer, proton therapy might be considered in the following scenarios:
Preserving Nearby Organs: Anal cancer is typically treated with chemoradiation (chemotherapy combined with radiation). The anus, rectum, bladder, reproductive organs, and pelvic bones are close to the treatment area. Proton therapy can reduce radiation exposure to these structures, potentially lowering the risk of side effects like bowel or bladder dysfunction, sexual dysfunction, or pelvic bone damage.

Recurrent Disease: In cases where anal cancer recurs after prior radiation, proton therapy might be used to target the tumor while sparing previously irradiated tissues, reducing the risk of cumulative toxicity.

Complex Tumor Location: If the tumor is in a challenging location (e.g., near the sacral nerves or involving lymph nodes in the pelvis), proton therapy’s precision might help avoid nerve damage or other complications.

Reducing Long-Term Side Effects: For younger patients or those with a good prognosis (e.g., early-stage squamous cell carcinoma of the anus), proton therapy might be considered to minimize long-term risks like secondary cancers or chronic gastrointestinal issues.

Patient-Specific Factors: It may be recommended for patients with specific comorbidities (e.g., inflammatory bowel disease) where minimizing radiation to healthy tissue is critical, or in cases where standard radiation doses might exceed safe limits for nearby organs.

When It’s Typically Not Advised
Standard Cases: For most patients with anal cancer (especially early-stage disease), conventional radiation therapy (like intensity-modulated radiation therapy, IMRT) combined with chemotherapy (e.g., 5-FU and mitomycin-C) is highly effective, with cure rates exceeding 80% for localized disease. Proton therapy’s added cost and limited availability often make it unnecessary unless there’s a clear benefit.

Lack of Evidence: While proton therapy shows promise, large-scale clinical trials directly comparing it to IMRT for anal cancer are limited. It’s not yet a standard recommendation in guidelines like those from the National Comprehensive Cancer Network (NCCN) unless specific circumstances apply.

Expert Consensus
Doctors typically weigh factors like tumor stage (e.g., T1-T4), lymph node involvement, patient health, and prior treatments.

I was stage 3 with 2 lymph nodes affected. Also it was wrapped with my sphincter muscle. I am fortunate to have found proton radiation. I believe that if I had gone the traditional radiation route, my sphincter muscle could have been damaged severely. I went to the proton center in San Diego. Pm me if you want further info

Hi @tinamarie2025, I wanted to check in. You're almost done with radiation. How are you doing?

I am happy to report that my scans were all good. I am considered to be in remission! I won’t need a CT scan again until next year. It’s been a long three years.