12 months on and spiralling

Hello AuroraHunter

I am so sorry you have had this news that, understandably has sent you into a complete spin.  I am sorry I can't offer any knowledge about treatments for AIN 3 but there have been some forum members on here whose experience mirrors yours, and I am hoping they pick up on your post.

You are obviously under huge stress at the moment and I can completely understand.  But as you say, they are keeping a very close eye on you.  I can't say any more other than send you a hug - please let us know how you get on.

Irene xx  

Thank you Irene. I suppose treatment, whilst not pleasant, might be a belt and braces approach and I will cope with it - just a little overwhelming after 12 months of scans and EUAs every 3/6 months. 

The actual cancer diagnosis I coped with really stoicly - maybe I’m just tired. 

I have to say I have had excellent treatment from the NHS and couldn’t have asked for more. 

thank you for the hug x

Hi AuroraHunter,                                                           I can only imagine how upsetting it is to think that you have left this behind only to find yourself facing treatment again. 

I don’t have experience with AIN 2/3 but it does sound that your team are very vigilant in monitoring you so closely. I hope that you don’t have to go down the chemo radiation route but can understand your anxiety given your situation. 
Some people have a shorter period of treatment as ‘ belt and braces’ rather than the full 28 days. 

I hope you get your scans and an updated plan very soon and that others on the forum can advise. 

Sending hugs x

Hi AuroraHunter,

I relatively new here, but saw your post and wanted to reach out to you... I can imagine that going from thinking it was all over to being thrown back into it all is extremely stressful and worrying. It's really good that you have been monitored and that this has been picked up at pre cancerous stage though. It means it can hopefully be dealt with and you can truly move on... the thought of treatment is definitely daunting, but don't think for a second that you're a 'fraud' in any way! There's always someone worse off than you out there, whatever we go through in life, but that in no way takes away from the depth of what you are going through personally. I am about to start my own treatment next week and really just want to get on with it now, despite how terrifying it all feels. There's a certain resilience in knowing that you've got to do what's needed to regain your health and survive! With the outcomes from chemoradiation being usually very good for this type of cancer, I should imagine having caught this at such an early stage you stand a very good chance of being cured, so hang in there.

Wishing you all the best going forward, 

Jenna xx

Thank you - I hadn’t thought about a shorter period of treatment so that is very helpful. Had CT today and MRI scheduled for next Weds so then clinic for discussion so will know more in a few weeks. 

Thank you - I hope your treatment goes as well as it can next week - I’ll be thinking about you. 

you are right we are very resilient and I feel more positive today. Scans done or booked in and then a week holiday so expect a clinic appointment when I get back. 

the monitoring has been very good - I can’t fault the NHS at all. 

There general anesthetics, biopsies and scans every three months so I couldn’t have asked for more. 

Hi AuroraHunter ,

I’m sorry that this issue is ongoing for you. Choosing your treatment path is a very individual decision.

I too had a T1N0M0 diagnosis back in February 2018, my tumour was undetectable on both of my diagnostic scans, I had a local resection as first line treatment but a tiny portion of my tumour only got a 1mm clear margin where as the rest had 4mm & I was referred on to oncology where I was offered into the PLATO clinical trial. The leg of the trial I was in involved 23 opposed to 28 days of chemo-radiotherapy & the radiotherapy was of a slightly reduced strength, it was described to me exactly as you’ve said, belts & braces, my oncologist said it was an insurance policy for my future. It might be worth asking about any clinical trials that may be available. I’m now almost 7 years post treatment & I’m cancer free to date as far as I’m aware. 

Nicola 

Thank you Nicola. That’s really good to hear. I’m definitely going to accept whatever treatment they feel necessary. 

I rang my colorectal nurse again and just clarified what was said at MDT. The biopsy showed AIN and they have suspicion there may be cancer cells so requested new scans and preferred line of treatment would be chemo / radiotherapy. 

I’ll keep updating as I hear - at least I’m prepared and thank everyone on this forum for their stories of treatment. 

Hi Lovely 

I got diagnosed with AIN3 in 2019 - fast forward to Nov 2024 - Cancer. 
I was having surgery for biopsies every 4 months from Sep 2022. My last surgery in Nov came back T1N0 :( 

looking back now, if they had of offered me the chemo and radio I probably would have taken it, because this is a living hell. So many surgeries, so much pain / infections and now Cancer :( 

I am 33 and don’t have children and now I can’t after treatment. Radio has put me into early menopause so I had to freeze my eggs. I won’t be able to ever carry either. 
The treatment is awful but if it saves the stress and worry, it could be a good option. I would advise asking as much as you can to make the best decision for yourself. <3 

If it’s any help I’m pleased I took the opportunity & went through with the treatment, the posts you read about ongoing monitoring with an AIN diagnosis would have had me living on the edge I think. I know the chemo-radiotherapy isn’t a walk in the park but I’ve recovered pretty well & have very few long term side effects & I'm living with the security that my cancer was dealt with fully.

Let us know how things go with your scans etc.

Nicola