Awaiting diagnosis and terrified AIN3

Hi Midlands20,

Welcome to the online community although I’m sorry you’ve had to find us.

It’s a very scary place where you are right now, we’ve all been there so totally understand how you’re feeling.

From what I understand AIN (Anal intraepithelial neoplasia) is a pre-cancerous condition that is graded 1-3 depending whether the abnormal cells are on the surface of the skin or full thickness. I think there are a few ways this can be treated including surgery, laser treatment & chemoradiotherapy. The appointment with your oncologist will clarify the best treatment option for you. Chemoradiotherapy is the most effective treatment of anal cancer & I’ve had this treatment 17 months ago, I’m at present am NED (no evidence of disease)  I know it’s really difficult but try not to think too far ahead. If it is decided that chemoradiotherapy is the best course of treatment for you then things should move pretty quickly, my treatment began approximately 2 weeks following my oncology appointment. Do you already have an date to see your oncologist? 

Please feel free to ask any questions you have & between us all we’ll do our best to answer them & try & ease some of your fears. 

Nicola

Thanks for your reply. Means a lot.  It’s AIN3, but I’ve heard the words ‘cancer, which we expected’, but I need to hear it again to be sure.

how long does the chemo:radio take?  Does it hurt?

thank you.

Hi again, 

Regardless of the specific diagnosis you are bombarded with a lot of information in the very beginning so I’m not at all surprised that you need some clarification over what was said, it’s almost impossible to take everything in, as soon as you hear the word ‘cancer’ it’s as if nothing else will go in isn’t it? 

Chemoradiotherapy can vary slightly, mostly it’s 28 sessions Monday-Friday weekends off, each session lasts only 5-10 minutes. I was entered into a clinical trial (PLATO) & my treatment was 23 days opposed to the standard 28, slightly more targeted & the radiotherapy was a slightly lower strength. I was diagnosed pretty early, stage 1 & my tumour was removed surgically prior to treatment. As for treatment hurting, it affects everyone differently to be honest, it does get uncomfortable towards the end because your skin reacts to the radiotherapy but if you’re advised to have the chemoradiotherapy  then your oncologist will explain all of this to you. I had very little reaction to the chemo side of the treatment at all. 

You’re at the worst possible stage at the moment, I’m sure once you’ve spoken with your Dr things will be a lot clearer & you’ll begin getting your head around it all. 

Nicola

Hi Midlands20

Your medical team are doing all the expected things to be able to give you the facts and a full diagnosis. Having been in this situation myself I appreciate how scary it is and that your mind will automatically be taking you to the worse case scenario.

As Nikki has already explained AIN3 is a grading given for pre-cancerous cells. Many of us on here have gone past this stage and pre-cancerous cells have become tumors. I myself had a 4cm x 4cm tumor in my anal canal. So it sounds like your condition has been found very early. 

Chemo-radiation is very effective treatment with a high rate of success, it got rid of my tumor 17 months ago. The treatment itself isn’t painful. The side effects accumulate slowly, affect everyone differently and are very manageable. Treatment is short usually 5.5 weeks however, it can be less for people with very small tumors or like yourself, pre-cancerous cells. I would imagine that chemo-radiation for pre-cancerous cells is given at a much reduced dose in comparison to someone who already has an established tumor. Therefore, side effects would also be minimalised.

It won’t be long before you have all the facts and at that point you will feel better because you’ll know exactly what you’re dealing with and what treatment will be given and when. 

In the meantime, try to keep yourself busy and take comfort in the fact that whatever is going on it has been detected very early. 

Keep us posted.

Sarah X

Sorry I didn’t realise that it was not as significant as others.  I’ll remove the post. 

I’m not sure why you are saying your health worries are insignificant to others, but the main thing is you are scared and you are doing the right thing in sharing your worries. I wish you all the best and that it is caught early. No need to remove the post. I don’t have anal cancer but I have Pancreatic with liver mets, but your health is just as important to mine. Keep in touch.

Hi Midlands20

Please don’t apologise or remove your post, your situation is just as significant as anyone else’s. You have come to the right site for advise and support. If you do have chemo radiation as treatment, we will be able to support you through it. 

Anal cancer is rare, there’s not many of us out there and many who come to this site have unfortunately, already got a tumor. This is not the case for you thankfully however, your situation is still significant and scary. I’m hoping that there are some other people on here with experience of AIN3 who will respond to you. 

So please keep sharing on here so you don’t feel alone.

Sarah x

I didn’t realised that anal cancer is rare. But I do remember that my favourite Charlie’s Angel Farrah Fawett fought it. Even highlighted her cancer battle on tv.  She was wonderful.

Hi

Depending on what you read, around 1200 people in the UK get anal cancer each year. Although I also hear it’s on the increase particularly in women. 

The lovely Farah Fawcett did fight it and another celebrity who recently had it is Marcia Cross who was in Desperate Housewife’s. She is doing a lot to raise awareness about anal cancer and HPV. 

Wasn’t Marcia Cross married to the late actor Richard Jordan, who died from a brain tumour? She was one of my favourites, she played Bree.