Anal Pre-Cancer with HPV 16/18

Posted by mom23boys @lcmtc, Sep 29, 2018

In 2015 I had my first colonoscopy, by a local GI doctor, with removal and biopsy of rectal/anal polyps. Pathology returned with AIN III/HPV 16 & 18. The GI I had seen for the colonoscopy downplayed the pathology, not informing me of the exact results and just referred me to a Colo-Rectal Surgeon who also dismissed my pathology. I never received a copy of the pathology and was unaware of the results. I was told I had internal hemorrhoids and to return only if I continued to have problems, of which I was not having, other than minor itching and some minor blood with hygiene care, which they knew about. In 2017, I was having other health issues and was checking all my medical patient portals for my medical records when I discovered the pathology report from the 2015 colonoscopy. I was shocked when I saw the report and knew that the pathology results were not good and that I should have been told about the exact nature of the results right away. I was angry and scared. I contacted the Mayo Clinic, faxed the results and received an appointment right away. That was a year ago. Mayo's CRS Dept has been very good. The exams are embarrassing, however, the doctors and staff have provided discreet and respectful care, which I am extremely grateful for. I have since had surveillance exams every 3 months, with 2 exams with biopsies under anesthesia and 3 anal cytology exams, all positive for AIN of varying degrees, mostly AIN III with HPV related changes. As mentioned earlier my HPV subtypes are 16 and 18, which are the two types most likely to progress to anal cancer. I also had another colonoscopy by my local GI (a different doctor than the one before) with biopsy of an anal nodule, which returned high grade AIN. I have had one round of topical treatment with Aldera which did reduce the AIN from a III to ASCUS but then the AIN progressed back up to high grade during subsequent surveillance exams. I have another surveillance exam coming up and plan to ask some questions about continuing down this "wait and see" path or are there other options for me? My fear is that I will end up with a colostomy and I am still young and am afraid of how that will impact my life. I don't want to wait until things get to the point that I have to have a colostomy. Surely there are treatments, besides topical, that Mayo can provide treatment for when there is recurrent high grade AIN, before it becomes invasive. I did not see any other posts but one regarding anal cancer and none regarding AIN. I hope someone out there can relate and maybe give me some information about their experience with this condition.

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@diamonda1

In 1994 I was diagnosed with breast cancer. In 1996 I was diagnosed with FAP, a colectomy was done. In 1997 a Pull through J Pouch surgery was done. In 2012 the pouch failed, and an ileostomy was done. In 2010 Breast cancer again and I opted for a bilateral Mastectomy.
On Friday 07/22/2022 a mass was found in the anal stump area. I was diagnosed with Mastatic Adenocarcinoma. I see an oncologist today to discuss the plan of action. PET scan with possible radiation and chemotherapy and surgery.
This has been a long road. I am mad as hell as I have done everything right to live and I've had a good life. Yet here I am. I just don't know what to think.

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@diamonda1, I wanted to check in to see how you're doing. What treatment plan are you on? how are you feeling?

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