Share this:
mom23boys
@lcmtc

Posts: 3
Joined: Sep 29, 2018

Anal Pre-Cancer with HPV 16/18

Posted by @lcmtc, Sat, Sep 29 4:09am

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.

REPLY

Hi @lcmtc, welcome to Connect. Reading your message, I can see that you have taken great care to monitor your health, understand all the test results and advocate for yourself. There are a few members who can relate to various parts of your story. I'd like to first introduce you to @travelgirl who was surprised with cecum cancer at the same time as discovering she had follicular lymphoma. She's here to tell you that she's doing well and living life to it's fullest.

@sbsurfside's husband has a similar story where hemorrhoids were the likely suspect, but it was cancer. @susan24 had anal cancer years ago and @mouselife has been treated more recently. My hope is that their stories will give you hope. While something was missed in 2015, you are in good care now and you can focus on preventative care as you have pre-cancer and are being monitored. Colorectal cancer is slow growing. You are young and shouldn't leap to thinking about a colostomy. I realize that is easier said than done.

Keep asking questions, lcmtc.

Thank you for your kind response and referrals. I have privately messaged them hoping they can give me some insight. Thank you again.

@lcmtc First I want to say sorry I missed this over the weekend. It was my anniversary and I wasn't near a computer all weekend.
And secondly welcome to connect.

I get the angry and scared more than you ever could imagine. When I was sick I didn't have any symptoms of either cancer. I had caught H-Pylori a bacteria infection in my stomach. It was from testing to diagnose that, that Dr's found 2 primary cancers at once. Prior Dr's I saw brushed off my symptoms.

I'm Rare and Unusual so they say. Catching 2 cancers fairly early with no symptoms. And I was 53 at the time. This is almost 3 years ago now. Talk about going into shock? I hyperventilated for the first time when I was told this. It was hard to comprehend and understand what it all meant?

I had to have a foot of my colon removed ASAP. That we believe took care of the Cecum Cancer. Although you end up on a watch list for the next 5 yrs of your life. Every six months they want blood to monitor the disease. And every 6 months there is that panic you have deep down inside praying that is hasn't come back.

and not only am I watched like a hawk for one cancer, they do it for two. The Lymphoma there is no cure. They monitor that with a CT scan every 6 months or a year if there no changes to lymph nodes. So I do a double dose of panicking.

So I have to keep reminding myself that being watched like a hawk, is better then no one paying attention at all. At least they can put a halt to the disease if decides to become active. Which I think is better than no one watching, and by the time they figure out what your symptoms are it is too late.

And YES by all means you need to read your medical records yourself. You should be thankful you caught what you did before it was any worse. So many do not and it is too late.

I also have a dear friend who had anal cancer, and I can tell you this. She was told, she would need a permanent colostomy by several Drs. Well she keep researching Dr's and found one who could do the surgery, and today she is cancer free. Plus the colostomy was temporary and she is living a normal life raising her grandkids and traveling the world. She was in her early 50's too when she was diagnosed. She is now 60 yrs.

You are in good hands with Mayo Clinic. I know this is easier said than done try not worry.. If your watched like a hawk they can catch it all early…
I wish you the best
Jackie

I am so sorry that you have had to go through all of that and continue to have to AND am glad your friend is doing well. Thank you for your kind words of encouragement.

Hi @lcmtc,

While we wait for other members to join in, I sincerely encourage to take a look at the Gastroenterology & GI Surgery Page on Connect where Mayo Clinic colorectal cancer experts have answered some common questions through short videos.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/tab/colorectal-cancer/

For example:
– What do the stages of colorectal cancer mean?
– What are the treatment options for colorectal cancer?
– Is immunotherapy an option for colorectal cancer?

With regard to surveillance colonoscopy, here are 2 videos where Mayo Clinic gastroenterologist Dr. John Kisiel explains the benefits and the process of these colonoscopies:
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/surveillance-colonoscopy-may-reduce-colorectal-cancer-risk-in-ulcerative-colitis-2/
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/interval-colorectal-cancer-low-with-surveillance-colonoscopy-1/

@lcmtc, I wish you all success, and look forward to hearing back from you – updates, questions, concerns – the Connect community is here, listening.

Please login or register to post a reply.