AIN3 Carcinoma in situ

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Hi everyone 

I’m sorry if this isn’t the place to ask as regardless of what the dr and nurse keep saying I’m fairly sure this is a pre cancer. Any way I was recently diagnosed with AIN3 carcinoma in situ with strong p16 block on a lesion 2cm from my anus they did a biopsy then subsequently I had surgery this Tuesday to remove the whole of the lesion and a margin of healthy tissue. (Pretty sore but healing yet to poop that’s a new fear unlocked lol) They also did a partial investigation inside and said it was clear (fairly sure that’s what I was told in recovery) I was told before I went down that they will go to MDT in hull about it and send of the complete thing for results but whatever the outcome it’s all highy treatable and not to worry! 

Just feel so confused about it all I haven’t really had anyone speak to me about it just been a whirlwind. I just wondered if anyone has had a similar experience and was that the end of it or what happens next. 
thanks loads for reading 

Emma xx

  • Hello Emma

    A warm welcome to the forum, and please don't worry, Ain3 has come up on here before.  I am not totally familiar with it as I was diagnosed with anal cancer but from what I understand it can develop into cancer and some people are kept  under surveillance because of this.

    You must be feeling so uneasy and confused, but the good thing is that the team treating you seem on the ball with what they have done so far.  Hopefully you will have a follow-up appointment where everything will be explained to you fully, and it would be a good idea to go with a list of your questions.

    And I do hope your poop wasn't too painful...

    Irene xx 

  • Hi Irene, thanks so much for your kind response. Yes I will hopefully get a bit more info then. Thank you 

    ps poop happened I survived Relaxed

  • Hello

    I'm just recovering from treatment for anal cancer so apologies I'm unable to advise on your current diagnosis - I can appreciate how worried you and but your team are on it and hopefully that's reassuring. 

    If your bottom is sore, I'd recommend some water wipes and also you can use vaseline locally.  

    I won't tell you not to worry as we've all been in the void waiting to understand results and the what next.... But do try to be kind to yourself - it can be an emotional rollercoaster so do make the most of this supportive community and keep us posted on the follow-up discussions.

    Fingers crossed.

    Ali x

  • Thank you Ali and I’m sorry you are going through that too I hope you are healing well. Thank you for that advice I have been using the water wipes and they are very helpful and I’ll keep in mind the Vaseline xx

  • Hi Emma,

    Sorry you find yourself in this "club" but there is lots of brilliant support on here.

    I originally had AIN3, you can read about my history on my profile, and if you search for it in the various forums you'll find others that have had it too.  I was very frustrated by the lack of information on AIN - even less than there is on anal cancer.  Some people on here seem to have only had AIN3 for years, others, like myself progressed to cancer.

    My AIN was internal, and was originally found on a colonoscopy.  It was an unusual polyp because it was depressed rather than raised, which in itself is more likely to be cancerous.  I don't think it is inevitable that AIN3 will always turn into cancer, so hopefully your surgery has removed all of the offending area.  If you think of it like an abnormal smear, where it is CIN rather than AIN, people are often treated for that with no recurrence.

    I was originally treated for AIN by the colorectal team, and only referred to the anal oncologist when it was actually cancer.  I wish I had seen the anal team earlier, so that is one thing I would enquire about.  I'm in Leeds which is a regional centre for anal cancer, not sure if Hull would refer to Leeds or not, but might be worth asking.

    Very happy to talk privately if you want to chat further, send me a friend request if you like?

    All the best,

    Kate

  • Wow Kate thanks for replying that’s quite the ride your on Sweat so sorry to read your struggles. I hear what you’re saying about the smear tho and that’s a good take on it. Mine was on the outside I thought it was a fungal infection which is why I have ignored it for so long trying to self treat. Interesting that yours was ain to start with I have seen a few people saying they had a watch a wait method until it changed and then treated. So I think i am greatful they have done it this way without waiting but maybe it’s because it’s external. Hmm thanks for your insight I do feel more at ease with the conversations I will update with the follow up xx