AIN3

Hi Maj,

Firstly welcome to the Macmillan online community although I’m really sorry that you’ve had to find us. 

I’ve had a quick search through the group but many of the posts regarding AIN3 are quite old & it looks as though a couple of the members are no longer part of the online community, this doesn’t mean there not someone out there that will see your post & reply as not everyone feels the need to post here some get all the support they need from reading others posts & reply’s. 

Do you have a date for your surgery? Waiting is always difficult & during these times your mind automatically goes to worst case scenario doesn’t it? I hope that someone sees your post that can offer you some reassurance but we’re here to support you when you need us. Sorry I couldn’t be more helpful. 

Nicola 

Thank u nicola.. This will be my second surgery for this, I'm just amazed at how quickly it has come bk, I suppose I'm angry too, I showed it to my gyne oncol, she said it was scar tissue from the last surgery although I new it wasn't, only to nearly have to beg to be seen by colo-rectal for him to tell me I was right and need more surgery, who can I trust in all this if a specialist can't even tell the difference between scar tissue an a small lump and lesions, I'm not sure if it's been there from last surgery and they missed it or its just a new growth, you're right my head is spinning and no1 gets it, I'm afraid they will say its cancer this time around, I'm waiting on a date, usual story we are so busy because of covid but will get u in as soon as we can, not very reassuring to be honest and that's what is so frightening, if its left any longer I'm scared of what they will say, thanks for replying x

I agree, asking people to wait longer than they should & using the pandemic as an ongoing excuse is unacceptable, it just isn’t good enough especially when cancer or a risk of cancer is involved! Truth be known our NHS staff were not looked after properly either during the pandemic which has lead to some leaving their posts & others are now on long-term sick leave due to stress etc., which will lead to delays long into the future due to staff shortages, if you don’t hear anything very soon I would chase this up, don’t be afraid to make a nuisance of yourself as it’s imperative that you get this surgery asap! He who shouts loudest so the saying goes! Keep us up to speed how things are going. 

Nicola 

Hi Maj.  I was in a similar situation.  I was first diagnosed with high grade AIN after a colonoscopy.  After having lesions removed, I needed another surgery 3 years later.  Unfortunately, the results of the biopsy was anal cancer.  The good news is that I am one year out of treatment and doing well.  I saw the doctor last week and there were no signs of lesions or cancer.   I was told from the beginning that this type of cancer is very treatable.  The waiting and the unknown were the worst for me.  Once treatment started, I felt much better, like I was doing something about the situation.  I hope this makes you feel a bit better.  

Hi nikki.. Definitely agree there, I will be chasing it up as last time I got taken in so fast because they said I had an 85 percent chance of it turning to cancer, I was petrified, I also have highrade  vulvar (VIN3) an it's also on the perineum know as PAIN 3, my head is running wild at the minute, hopefully I will hear soon, and I will let u know as soon as I hear anything. Thank u

Hi Amy Jack, thanks for replying, that's what I'm afraid of this time, I had surgery Nov 2020, found a pimple sized wee lump in April , showed my gynaecologist because I'm also being treated for higgrade VIN, that's was August 21, she said no it's scar tissue, and saw my cool-rectal surgeon 2 weeks ago he said yes it's back with a few other lesions, I'm praying it's not cancer but my head is ia spin about what if! That definitely gives me hope if it's cancer then they can treat it, so glad ur doing well an thanks again

Hey Maj, 

Hope all is well. Did you have the surgery yet? 
I also have AIN3 but I believe it’s around the dentate line so they are unable to feel this with a PR exam. My oncologist has told me that there is no treatment for it, the only option is surgery but this comes with a risk of stenosis of the rectum so if the lesions are not bothering me then it’s best to leave them and follow up every 6 months. Quite annoying really as I know they’re there. Also the research into AIN3 is pretty sparse unfortunately. I have just had another MRI scan to check on things so fingers crossed that’s ok.