New diagnosis again

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Hi everyone,

I was diagnosed last year in April '23.

When I went to  my appointment with the oncologist they informed me it wasn't anal cancer but AIN 3. This is pre-cancerous stage, high grade, but not cancer. Long story short I had to have biopsies every three months (under general anaesthetic) to see if it turned or remained the same.

Forward now to October this year and it has developed into anal cancer, T2 N1, I'm gutted to say the least.

I have a stoma (Colostomy), which was originally how the found the anal tumour whilst dealing with a bowel blockage. I'm coping really well with the stoma even though I'm not fond of it it saved my life at the time.

Had planning CT scan and planning MRI scan, have my pre-op next week and start Chemoradiotherapy 2 December. 

I'm getting anxiety about having the treatment, I know its silly, but the thought of it scares me so much.

Better stop at that, I could talk the hind leg off a donkey....

Chris

  • Chris

    I am not surprised you are really upset that this has developed into anal cancer, your reaction is totally understandable.  I am really sorry that this has happened and the one saving grace is the fact you already have a stoma.  Bowel movements can be extremely painful at the latter end of treatment and having a stoma avoids this.

    The treatment is tough but doable, and if you think that it is only five and a half weeks plus recovery time it really isn't long.  And the side effects don't all come at once, it is a very gradual thing mainly towards the end of treatment.  And count off those days, when the course finishes it is such a relief not to have to make the journey to the hospital and everything can be concentrated on rest and recuperation.

    It is important that you tell your treating team if anything bothers you, they are normally very quick to help and can prescribe medication, pain killers if needed and dressings on the same day.

    And please don't worry about how much you talk - that is what the forum is for and for support should you need it.

    Big hug

    Irene xx

  • Hi Chris

    I don't really know much about stomas but the little I do know it will go in your favour as doing a poo was not fun once I got into treatment. Like Irene has said it's not long out of your life to get your health back. Come on here and talk ask questions what ever you need. You will get lots of tips and advice from people, one thing I will say is run everything past your medical team as different hospitals seem to ok different things and things change with time. Sending hugs. Xx

  • Hi Chris  - I feel your anxiety. My radio/chemotherapy course for anal cancer finished a couple of days ago. It took five weeks and three days. I know the pain and soreness will persist a while yet but I also know it’ll be worth it. Half way through my treatment I began (tentatively, I’m English!) to engage with some other patients at Guys Cancer Centre. Beginning, perhaps , with asking how many more days have they left, or some such. I found a real camaraderie sprung up which really helped. Weirdly I also found myself watching films and documentaries that told stories of people in a worse situation than mine. If they can handle it - then so can I! Good luck. 

  • Hello Chris,

    I understand your feelings about developing anal cancer, but I just wanted to say don't stress the treatment too much. It is pretty straightforward.

    We all react differently and some have had fairly mild side effects but in any case the medical people looking after you have a big range of things to help, and if you read through this forum you will find lots of support and advice. 

    Keep reminding yourself it is very effective, and overall it is a fairly short time in your life.

    Good luck, let us know how you go.

  • Thanks for responding all. 

    I'm not very good at sharing my fears so it took me a while to pluck up the courage to come on here and chat, I am going to continue to do so though, I think it might just keep me sane talking to others starting/going through/ been through too.

    I'm at St James in Leeds - they are extremely good with providing all the information so just got to get through the first day.

    Chris

  • Hi

    Totally get not being good at sharing fears/feelings. I'm not great at it on here but it is easier sharing with people who don't know you and you don't know them. Plus nothing beats first hand experience a cancer diagnosis is a complete head f**k and unless you've had one I don't think you can understand the feeling of dread you get. Make sure you ask any questions you need and unload. People talk about all sorts. Xxx

  • Hi Chris your journey is very similar to mine I was diagnosed AIN3 back in June I had 3 biopsy’s was put under each time and in a lot of pain afterwards also every scan possible. I was diagnosed today with anal cancer T2 N1 M0 I don’t have a stoma but my bowels movements are very varied ( constipation/ urgency) I’m also worried about my treatment but also relieved that I finally know as I have been overthinking for months.

    thinking of you xx

  • Hi

    Just to let you know I also start my chemotherapy and radiotherapy on Monday the 2nd. So we’re be in it together. Xx 

  • Hi I’m in hospital 28th Nov being measured for my radiotherapy I think it involves a CT and tattoos not entirely sure though.

    take care xx

  • Do you have all your dates and times yet? I'm back tomorrow for normal Ct and MRI scans and then Thursday for Pre-op, assuming this is just to show you where everything is and waiting areas etc? I'm so nervous!

    Good luck to you too xx