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Treatment for ain 2/3 anal pre cancerous changes and looking for buddies

35 replies

Flippinghecklike · 09/11/2022 08:09

I was wondering if anyone was in a similar boat right now and looking for buddies / people to share info with as this seems to be a bit of an understudied area. I am a 40 year old woman with no known problems with immunity such as recent organ donation or hiv etc who has a diagnosis of “at least ain2”, meaning the second possible level of three degrees of pre cancerous cell changes in the anus. I am under the care of Homerton hospital and I have started treatment with aldara. The MDT are discussing my case at their next meeting in early December and I may be considered for laser treatment. I know my AIN2 is hpv 16 related, hpv 16 being the strain most associated with anal cancer.

I am trying to learn as much as I can about this condition but most studies seem to be on men or people with HIV and I am unsure how relevant they are to me.
I do not know what the chances of the aldara cream being effective at clearing the AIN really are, or the laser treatment, or whether it is possible to keep going for laser treatment multiple times or what the odds are of it developing to cancer despite treatment.
I was quite anxious when it was first diagnosed but now just feel really keen to learn as much as possible.

Is anyone or has anyone been in a similar position? Would love to have a fellow traveller if so!

Thank You!

OP posts:
User19886 · 24/01/2023 12:19

I've requested a colonoscopy from my gastroenterologist (I have Crohn's) so I should hopefully get an answer if I have anal dysplasia - been itching for a year!

Flippinghecklike · 24/01/2023 15:20

that sounds like a smart move, hope all goes well xxx

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Peachesncream1 · 28/04/2023 22:40

@Flippinghecklike so glad that you put this up I am going through the same mosh thing was hpv + in 2015 maybe sooner all the way till 2018 I think the next smear in 2020 and this year didn’t show anymore hpv. I have had lletz in 2015. I have had this growth around my anus like extra skin and it’s been there for 2 years. Ironically it’s only starts itching after I finish my periods. I have ibs so do get looser stools and due to this had a colonoscopy last year November which showed a small serrated polyp which is a polyp more likely to become dangerous so they removed if and now I have to have colonoscopy in 3 years time. I am only 38 so was upset and on top of this have health anxiety so my new anxiety is hpv that I had previously and this anal extra skin. My only consolation is that I had a colonoscopy less than 6 mths ago and have had this anal tag for over 2 years. Do let me know how the Homerton clinic is as I was considering going there.

Peachesncream1 · 28/04/2023 22:42

Oh and the serrated polyp has nothing to do with hpv that’s just happens in some individuals could be hereditary

Flippinghecklike · 29/04/2023 20:09

you poor thing - health anxiety is the pits, I really know. Homerton are fab but they treat anal cancer and pre cancer at the clinic I attend and there is no reason to think you have either! I recommend asking the GP to check the anal tag and if they are concerned they can refer you to Homerton (it is an NHS clinic and you cannot self refer) but I really
dont think this sounds like you have cause to
worry xxxx

OP posts:
User19886 · 31/10/2024 12:52

@Flippinghecklike and @MrsSassenach how are you getting on?

Flippinghecklike · 05/11/2024 18:05

Hello! At last appt there was no visible dysplasia (previously had laser twice on different areas) and also hpv free so now am on annual checks not 6 monthly- hope everyone else doing well too!!!

OP posts:
User19886 · 19/11/2024 18:28

Flippinghecklike · 05/11/2024 18:05

Hello! At last appt there was no visible dysplasia (previously had laser twice on different areas) and also hpv free so now am on annual checks not 6 monthly- hope everyone else doing well too!!!

That's amazing news congratulations! I finally just had a HRA this evening, about two-three years after I started getting itching. The doctor felt he saw some potential low grade cell changes but nothing that warranted a biopsy. He did an anal smear so will wait to see the results. If that comes back low grade he will see me in a year. He did say anal dysplasia progresses very slowly; slower than cervical dysplasia.

User19886 · 25/11/2024 15:44

Hi @Flippinghecklike I just got my results from my anoscopy as follows:

We took your anal smear today and it was negative for high-risk HPV and the cells were normal.

At high-resolution anoscopy the perianus and anal canal both had some minor changes visible which could have been due to HPV, but there were no areas suggestive of high-grade change, therefore no biopsies were needed. In addition, digital rectal examination was normal.

I am not sure why I appeared to have minor changes but the smear came back negative for HR HPV/normal cytology?? I go back in two years so I am taking this as relief, and no idea what is causing my chronic itching of the area!

Flippinghecklike · 25/11/2024 23:07

That is brilliant news! Minor changes could be anything I think - maybe changes from a previous but now cleared HPV infection? The main thing is - you are fine!!!

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