Wow! A week ago life changed!

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Hi Wave tone1 I’m a 45 year old female and a week ago I was told I have anal cancer. I had a lesion on my perineum which was removed under general anaesthetic just over a month ago. I had my suspicions, I’d googled but 4 weeks of waiting on results I thought no news is good news. I even went to the consultant appointment on my own! Let’s face it, nothing prepares you for those words, accompanied or not!

So here I am, a week down the line I’ve had blood tests and a CT scan with contrast. I’ve been referred to gynaecology and am expecting appointments for an EUA and Colonoscopy. Everything is up in the air and totally out of my control and I don’t do well without having a clear plan, dates, next steps.

So many questions bubbling in my head - like how long does it take to stage the cancer and does everyone have to have certain treatment?!

I guess I’m posting because I’m hoping there may be people with a similar story to mine, that can share their experience and I won’t feel quite so at a loss.

  • LAR4577

    I am so sorry that were on your own when you found this out; we all need support at times, but in the face of a cancer diagnosis other shared problems pale into insignificance.  And I am also sorry that you had to join this forum, but you have come to the right place.  Each and every one of us have heard those words and the world literally morphs into a sea of confusion and fear.

    However, you should be on the fast track for treatment, and unfortunately all the scans, pooling of information and meetings of professionals have to take place to determine the stage of the cancer and the best course of treatment.  Different local authorities sometimes have slightly different protocols for the treatment of anal cancer, mainly in the chemo delivery method, but chemo/radiotherapy is the gold standard overall.  I know the wait is utterly nerve-wracking.  I think you already realise that once everything is identified and the treatment plan is in place, you will feel a lot more in control and be able to plan ahead.  

    There are lots of tips I could give you but right now your head is probably still spinning from the shock of the news.  But rest assured, there are so many tips and coping strategies if you undergo the standard chemo/radiotherapy route.  Pease do keep us updated on the next stage of your treatment, there is a very caring bunch of people on here who will literally hold your hand all the way through and beyond.

    Irene xx

  • Hi  ,

    Firstly welcome to the Macmillan online community although as Irene has already said I too am so sorry that you find yourself here. 

    We all completely understand the way you’re feeling right now as we’ve all unfortunately walked the same path. 

    I too was alone when the colorectal consultant delivered my diagnosis, I was expecting bad news as he’d tagged me onto the end of his morning clinic just 7 days after my biopsy but that didn’t make it any easier hearing that I had cancer! I remember just going completely & utterly numb!! Following a brief chat of the next steps the specialist nurse that sat in on my consultation gave me the Macmillan leaflet which explained everything about anal cancer & ultimately directed me here, it’s the best gift she could have given me as the support I received from this forum saved my sanity it really did! She then walked me down to radiology to make my appointments for CT & MRI scans. 

    Once your scan results are available they will be presented at an MDT (multi disciplinary meeting) where they’ll be reviewed by several Dr’s including a colorectal surgeon, oncologist & radiographer, they will stage you then they’ll decide on the best treatment plan for you. 

    As Irene has mentioned unless diagnosed incredibly early the standard treatment for anal cancer is chemoradiotherapy, my particular regime was a very short chemo infusion on day 1 of my radiotherapy then oral chemo twice a day each day of treatment thereafter, radiotherapy was Monday-Friday for 4.5 weeks (the standard is 5.5 weeks but I’d had my tumour removed surgically prior to this) then I was off all treatment each Saturday & Sunday. There is another regime that some oncologists choose to use which delivers the chemo in weeks 1 & 5 only via a pump. 

    Again I don’t want to present you with information overload so please ask away if there’s anything specific you think of you’d like to ask, nothing is too personal here. 

    We’re here to support you however we can. 

    Nicola 

  • Thank you for your message, it felt odd to reach out to a community I don’t know, but am now very much a part of.

    So much is unknown right now, but I’m trying to focus on what is in my control - half term fun with the kids and enjoying a couple of days off work and looking forward to our summer holiday. 

    Thank you again xx

  • Hi Wave tone1 and thanks for your reply. It’s good to not feel quite so alone. Chatting to family and friends, I think there is only so much they can understand.

    Thanks also for the info on what happens now from both yourself and Irene. At least it sounds like everything is moving along as it should and hopefully it won’t be too long before I am able to get an update. I think the summer is going to be swamped with lots of appointments.

    Thanks again xx