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New Journey: Anal cancer and questions about temporary colostomy
Colorectal Cancer | Last Active: Sep 22 9:59pm | Replies (17)Comment receiving replies
I was not given options: Stage 3 SC: 6 weeks capecitabine + radiation. Week 3 began painful bowel, urination, explosive unpredictable diarrhea, weight loss, lethargy. Intermittent saline infusions. By the end of 5 weeks, pain of open vaginal and anal lesions so intense and body so weak, I discontinued treatment. Took 1 month to recover enough to walk around the block. Began slow healing, 4 mo post treatment - clear scan. Then began succession of painful interior+exterior herpes/shingles genital herpes, resistant to valacyclovir but have resolved. Have not regained 15 lost lbs. have tried pre + pro biotics, B12 injections. Trying Integrative Medicine specialist soon and Enclave BioActives “emma” supplements. I am 76. This was misdiagnosed as bleeding hemorrhoid by 3 Dr’s who did scan and labs - never did a physical digital exam.
I expected to go on about my life after recovery. No one counseled me during the treatment or prepared me for after effects. This site has been the single best source of information - and the realization that I must adapt instead of searching for a magic solution. As someone posted, “isn’t it amazing that our bodies are trying to find ways to work around the damage of radiation.” There has to be a better, less destructive way to treat this disease. There has to be a reason why this is increasing in younger adults, despite getting vaccinated in adolescence. Where are Merck’s efficacy numbers on 25+ years of this?
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@asknot136, I hear your frustration in that you felt unprepared and uninformed about what to expect facing anal cancer and treatment. It's a rough road that's for sure. I'm glad that sharing here in Mayo Clinic Connect has been helpful in learning more about adaptation and managing the side effects of the disease and its treatment.
I can see that you are also worried about the increase in young people being diagnosed with anal, rectal, or colon cancer. At the risk of taking this discussion momentarily off-topic, here's some information I found.
- Not all colorectal cancers are HPV related. Most anal cancers are HPV related. https://blog.dana-farber.org/insight/2020/10/what-is-the-difference-between-rectal-and-anal-cancer/
- Anal cancer is rare in people younger than 35 and is found mainly in older adults. People age 75 and older have the highest rates. https://www.cancer.org/cancer/types/anal-cancer/what-is-key-statistics.html
- The HPV vaccine is up to 97% effective at preventing cancer-causing strains of human papillomavirus and related cell changes when given before a person is exposed to the virus. Timing matters. https://www.acog.org/womens-health/experts-and-stories/the-latest/what-i-tell-every-patient-about-the-hpv-vaccine
- Colorectal cancer is increasingly affecting younger adults — a concerning trend. Dr. Eric Dozois, a Mayo Clinic colon and rectal surgeon, says about 10% of patients diagnosed in 2026 will be under age 50, compared with 3% to 4% just 25 years ago. As the trend continues, Mayo Clinic surgical teams are using innovative, minimally invasive approaches to treat colon and rectal cancer — helping patients recover faster after surgery. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-advancing-colorectal-cancer-care-through-innovation-and-screening/
Back on topic re managing side effects:
Integrative medicine can be helpful in managing long-terms effects of treatment. Mayo Clinic has an Integrative Medicine and Health program combines conventional Western medicine with evidence-based complementary therapies to improve overall well-being and manage chronic conditions. https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567
@asknot136, are you also living with a colostomy?