Anyone have experience with anal intraepithelial neoplasia (AIN)?

Posted by shaerical @shaerical, Sep 30, 2022

Hello,
Does anyone have experience with AIN III? I have some questions.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

Welcome @shaerical, as you like know, anal intraepithelial neoplasia (AIN) is a premalignant lesion of the anal mucosa that is a precursor to anal cancer. I'm tagging a few members who have experience with anal cancer, like @marty28 @soniamckenzie @joan19 @wilcy. They may have experience with AIN to share.

In the meantime, Shaerical, can you share a bit more about yourself? How was AIN discovered for you? What questions do you have?

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@colleenyoung

Welcome @shaerical, as you like know, anal intraepithelial neoplasia (AIN) is a premalignant lesion of the anal mucosa that is a precursor to anal cancer. I'm tagging a few members who have experience with anal cancer, like @marty28 @soniamckenzie @joan19 @wilcy. They may have experience with AIN to share.

In the meantime, Shaerical, can you share a bit more about yourself? How was AIN discovered for you? What questions do you have?

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Hi, well I'm 42 with 3 boys. My 23 year old is in Japan as he is a United States Marine, my other 2 are twin 17 year olds in their senior year of high school. I'm married and work as a data manager. 2 years ago I was diagnosed with VIN3 and had to have surgery to remove it. 6 months later it came back and I had to have surgery again. This time it has moved and is AIN3. My colorectal surgeon wants me to use topical treatment but my gyno oncologist and my gyno both told me previously that for stage 3 it doesn't tend to work and most people don't use it correctly because it burns and hurts. I am getting a 2nd opinion on treatment but I was wondering if anyone knew what other treatments there are so I know what to ask. The Dr said surgery is not an option as it involves the sphincter muscle. I have tried to research it but it's all centered around HIV+ men who have it and I am not sure if it's different for women. I already have sexual issues from the VIN surgeries and just really want to make the right decision. Thanks for listening.

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I'm 56 and was just diagnosed AIN3. I don't understand why I'm being judged and looked down upon. I've been with my husband since 1984 and haven't done anything wrong. I've had T3 in my blood since 2016 and Drs couldn't find anything and blamed it on hems. Actually made me feel terrible for losing so much blood and bothering them AS IT WAS "Inconsequential". Now, different Drs, want surgery and possibly chemo within 6 wks. I just don't know what to say or do. Btw, in the last 2 wks all records from 2016 can not be accessed.

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@wastars1

I'm 56 and was just diagnosed AIN3. I don't understand why I'm being judged and looked down upon. I've been with my husband since 1984 and haven't done anything wrong. I've had T3 in my blood since 2016 and Drs couldn't find anything and blamed it on hems. Actually made me feel terrible for losing so much blood and bothering them AS IT WAS "Inconsequential". Now, different Drs, want surgery and possibly chemo within 6 wks. I just don't know what to say or do. Btw, in the last 2 wks all records from 2016 can not be accessed.

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A medical problem no matter what it is, is nothing to be judged about. I hope you are misinterpreting this. Keep in mind judgement is a reflection on the person or persons doing the judging, having nothing to do with you.
I am a 61 year old woman with anal cancer. I have been in a monogamous relationship with my husband for 41 years, was never promiscuous, & never engaged in anal sex. When I was first diagnosed, I felt dirty, until I came to my senses & realized I’ve never judged anyone’s personal way of life before, so why was I going down that path. The literature focuses on homosexual males, (although it states that there is a rise in women getting this cancer), as always, risk factors are just that. This is my second cancer in 2 years, the risk factors for the first cancer were smoking, & being a male of 70-80 years old. I’ve never smoked.
This is a very hard cancer to have. The treatment is very painful, be kind to yourself, you will need your strength. Very best of wishes for you!

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@shaerical

Hi, well I'm 42 with 3 boys. My 23 year old is in Japan as he is a United States Marine, my other 2 are twin 17 year olds in their senior year of high school. I'm married and work as a data manager. 2 years ago I was diagnosed with VIN3 and had to have surgery to remove it. 6 months later it came back and I had to have surgery again. This time it has moved and is AIN3. My colorectal surgeon wants me to use topical treatment but my gyno oncologist and my gyno both told me previously that for stage 3 it doesn't tend to work and most people don't use it correctly because it burns and hurts. I am getting a 2nd opinion on treatment but I was wondering if anyone knew what other treatments there are so I know what to ask. The Dr said surgery is not an option as it involves the sphincter muscle. I have tried to research it but it's all centered around HIV+ men who have it and I am not sure if it's different for women. I already have sexual issues from the VIN surgeries and just really want to make the right decision. Thanks for listening.

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I just finished chemo radiotherapy for anal cancer (it will be one week on Friday). My cancer is stage IV with lymph node involvement, so this was the only treatment option. It is very painful, and I was only able to get the first dose (4 days) of chemotherapy, because of adverse reactions (wbc, platelets, hemoglobin all dropped dangerously, & liver functions… dangerously high). For me the only other option was a radical surgery with permanent colostomy, which they do if treatment fails. You are in an earlier stage, thankfully. I would ask what your options are, & which have the best outcomes for curing this at this early stage. I don’t think there is a difference in treatment for men or women. I wish you the best of luck.

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Thank you for your kind responses. I'm currently having trouble with the medical facility and scheduling, but will call when the office is open on Tuesday. No one called to Inform me of an appointment, but one showed up on my app? I'm not sure if it's for surgery or more tests. Sorry, just a bit frustrated and confused. I am not comfortable with no communication from my care team.

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@amyb5

A medical problem no matter what it is, is nothing to be judged about. I hope you are misinterpreting this. Keep in mind judgement is a reflection on the person or persons doing the judging, having nothing to do with you.
I am a 61 year old woman with anal cancer. I have been in a monogamous relationship with my husband for 41 years, was never promiscuous, & never engaged in anal sex. When I was first diagnosed, I felt dirty, until I came to my senses & realized I’ve never judged anyone’s personal way of life before, so why was I going down that path. The literature focuses on homosexual males, (although it states that there is a rise in women getting this cancer), as always, risk factors are just that. This is my second cancer in 2 years, the risk factors for the first cancer were smoking, & being a male of 70-80 years old. I’ve never smoked.
This is a very hard cancer to have. The treatment is very painful, be kind to yourself, you will need your strength. Very best of wishes for you!

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Thank you for your kind words. I will try to remember your advice. The doctor wants surgery first as the location and size is becoming a bit of a problem. It's a bit disconcerting as research states surgery is a radical step to begin. The doctor wouldn't discuss the AIN part as she's a surgeon, not a oncologist.

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@wastars1

Thank you for your kind responses. I'm currently having trouble with the medical facility and scheduling, but will call when the office is open on Tuesday. No one called to Inform me of an appointment, but one showed up on my app? I'm not sure if it's for surgery or more tests. Sorry, just a bit frustrated and confused. I am not comfortable with no communication from my care team.

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I’m sorry that happened. I am really pleased with my care team, & having said that, when my tests showed the anal cancer, they were off & running. I got several calls from different specialties to schedule appointments, that I didn’t know I needed. It was off to the races, & sometimes they forgot to tell me. The app can be really helpful, but also can lead to miscommunication in my experience. Hopefully bringing it to their attention will fix the problem. Big hug!

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@wastars1

Thank you for your kind words. I will try to remember your advice. The doctor wants surgery first as the location and size is becoming a bit of a problem. It's a bit disconcerting as research states surgery is a radical step to begin. The doctor wouldn't discuss the AIN part as she's a surgeon, not a oncologist.

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How are you doing, @wastars1?

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@wastars1

I'm 56 and was just diagnosed AIN3. I don't understand why I'm being judged and looked down upon. I've been with my husband since 1984 and haven't done anything wrong. I've had T3 in my blood since 2016 and Drs couldn't find anything and blamed it on hems. Actually made me feel terrible for losing so much blood and bothering them AS IT WAS "Inconsequential". Now, different Drs, want surgery and possibly chemo within 6 wks. I just don't know what to say or do. Btw, in the last 2 wks all records from 2016 can not be accessed.

Jump to this post

Greetings, wastars! – – –

I hade anal cancer stage 3C, HPV-16 mediated, for which I was treated with 5-FU, Mitomycin, and radiation. I had 2 metasises since over the course of 6 years.

My radiation oncologist was a very compassionate man who sat me down to tell me NEVER to be ashamed. So many people in the USA, over 90%, have been exposed to HPV that it's now just part of the human condition. The huge majority of the exposed never know, as an infection rarely causes an illness that is recognized. And anatomically, when women have intercourse with someone who is unwittingly infected, well – body fluids run downhill after all.

Anybody who tries to shame you should be left in your dust, ESPECIALLY medical professionals. Speak to their supervisors or the hospital's medical board or state medical board. Sic 'em!

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