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

[Flippinghecklike]

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!

I'm not sure how helpful but I attended a webinar recently on the Anchor Study which included some information on women. As you say it's an understudied area as many people can have anal HPV unknowingly which then clears. I'm attaching it here and you can watch the webinar/read the articles which will include the most up-to-date information. The 2 pdfs the Perspective of HPV in women and the Treatment one might be most useful. www.bhiva.org/BHIVA-webinar-ANCHOR-Study

As you say people with HIV can be at more risk of HPV which is why women affected are offered annual smear tests. This is why I have an interest in it.

The good news is you are at the best place to get treated. As you'll see in the study Iain Reeves is a consultant at Homerton and there is also the fabulously knowledgable Laura Waters there. You should be able to get all the answers to your questions there.

As for a buddy, if one doesn't emerge here I'd suggest you ask at Homerton. They have peer support embedded into their HIV clinic there (2 people with the same health condition engaging with each other for mutual support) and might be happy to link you up with another woman with anal pre cancerous changes.

I hope your treatment goes well.

This is absolutely amazing advice - thank you so so much, I appreciate you putting so much time into setting it all out so clearly, thank you!!! Xxx

@Flippinghecklike can I ask how your diagnosis came about? Were you having symptoms?

I have had persistent HPV when I have had cervical smear tests. I'm scared I have it anally as well, I've been getting itching and soreness, but everything looks ok. I'm scared to go to the GP tbh. I feel like they'll probably fob me off anyway.

Yes of course - I paid (daft money, don't have insurance so paid out of pocket) for an HRA (high resolution anoscopy, really detailed anal exam like a smear) because I had v similar symptoms - persistent itching but no soreness. They tested for HPV and found it and also a small patch on AIN.

Thanks @Flippinghecklike. I doubt I could afford to pay anyway tbh so will probably just try to forget about it!

TBH I credit carded it myself... hopefully the GP is helpful

Whereabouts did you go, and how much damage to the credit card was it? 😬

I went to cleveland clinic in london and didnt get much change from a grand 🤯🤯🤯… however once they found what they did they wrote to gp saying i needed referring to the clinic at homerton where the consultant i saw normally works and will be under them now. It was a huge outlay for me, we have two small kids and zero savings and i can see it might well seem daft / mad but am glad I did it, even if I still havent paid it all off months later 🙈🙈🙈

@Flippinghecklike it doesn't seem mad at all, I think you're brave! Did you self refer to the Cleveland? Was your GP not helpful in the first instance?

Sorry for all the questions. I've not told anyone that im worried about this. Convinced myself it's cancer now.

my gp is fab but i have health anxiety anyway and couldnt work out in my head if this was sane and knew it was very very unlikely they would refer me so self referred. To reassure you, anal cancer is genuinely rare - that is why referrals are not typically made.

You've been so helpful @Flippinghecklike, thankyou ❤️

It's the persistent HPV that makes me really worried. Apologies to ask more questions, but you seem to have good knowledge! Do you mean that referrals aren't typically made to the place you went? Is there a likelihood given the symptoms and my persistent HPV that they would refer me to my local hospital for different kinds of tests? Sorry, I just wasn't sure if you have any ideas based on your own experiences.

I've wanted to carry on ignoring it but I don't know what to do.

Ask away! I dont know all that much im afraid, just that women are not often referred to hra because of how rare anal cancer is - i mean the procedure for checking for cell changes not my hospital in particular. I would go to the GP and see what they say.

Ah ok so if not referred to HRA, do they refer to something else? If there's something on the NHS rather than paying it would be good, even if not quite the same.

I need to work up the courage to go to the GP about it. Pathetic I know.

Not pathetic at all - I dont really know what they would do just that the consultant I saw said GPs rarely refer for screening as it is comparatively rare

Do go see your GP about it if the itching and soreness has been persistent over a period of time, not least to rule out other causes like threadworms, piles (including internal) and menopause-related urogenital atrophy (there are probably others).

As mentioned most of us will have one strain or another of HPV knocking about that for most either lies dormant or the body clears. HPV found does not mean cancer, rather it's a virus that might lead to cancer and can take many years to do so. Issues related to the immune system which can include illnesses or stress might cause it to resurface.

You said you'd had a few positive results - were these in a row, how many and did any come with abnormal cells noted where a colposcopy would be offered under the 2 week pathway? It's not too long ago that smear tests in England, Scotland and Wales changed from testing for abnormal cells first (if none were found then they didn't look for HPV) to looking for HPV first. If you've had 3 positive results in a row you'd usually be referred for a colposcopy and could talk over any concerns of anal pre-cancer there.

Hi @HIVpos

I think I've had HPV positive smears at every test I've had. I'm late 30s and all of mine have been tested for HPV. My body just doesn't seem to clear it which is why I'm worried.

I've had two colposcopies- one due to abnormal cells, which turned out to be CIN2 so had a procedure to remove them. The second due to borderline cells and they found nothing wrong during the colposcopy that time.

Almost too scared to go and do anything about it. I can't face it.

Some women find HPV harder to shrug off than others. If I’m reading it right your more recent test showed no abnormal cells which is the important thing.

it’s up to you on if you want to do anything about it, however it’s far more likely that the itching is due to something else. I’ve had itching and soreness, also some bleeding, but my issues have been related to both thrombosed piles and atrophy due to low estrogen.

Thankyou @HIVpos. No abnormal cervical cells at my recent smear but still HPV. No idea about anally though! I know I have persistent HPV and I suppose it could be anally as well?

There would only be a tiny chance of this and more likely due to something else. If you've had the itching for a while you'll only know if you get it checked out which is of course your choice. As mentioned there can be other reasons www.nhs.uk/conditions/itchy-anus/

Thankyou @HIVpos , really grateful for your comments. I've worked myself up thinking it's cancer, because of having had CIN2 previously and knowing the HPV doesn't go away. Hopefully I'm just getting carried away.

@Flippinghecklike I hope your treatment goes well.

Hello @MrsSassenach I am in the exact same boat. I have tested positive for HPV during my smears for 13 years. I have never been negative. In the past year it finally progressed to CIN 2 and I had LLETZ in June. I received a request for my 6 month follow up smear but I am waiting until after Christmas as the waiting and subsequent results would ruin the period for me.

I too have experienced anal itching for a year. I've tried OTC thrush treatment, worm treatment and a prescribed fungal and steroid treatment from my GP. Nothing has worked and I'm very worried about anal cancer now. I do have private insurance but don't know if they would consider this a pre-existing condition since I've had cervical HPV before the insurance. I am totally consumed by this.

How are you getting on @MrsSassenach and @Flippinghecklike

I have an appt to review progress in May, til then ploughing on with aldara! Hope youte all ok!

Ahh please let us know how you get on. Has Aldara improved your symptoms of itching?

it has actually made them a bit worse 😂 The side effects have been a bit gross too: had to pause for a bit. But hoping the reaction means is working!!!