Diagnosis Confirmed Today

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Hello,

I have been told today that I have a form of anal cancer following a colonoscopy/biopsy I had a couple of weeks ago. An MRI showed the tumour as aT1-T2 but I’m having an ERUS next week to confirm this. I’ve also been told I now need a CT-PET scan.  

Im feeling pretty scared about what treatments will be needed as my consultant mentioned chemo/radiation on the phone today. I had in my mind that it would just be a removal.

I have an 11 year old and 9 year old and I’m worried about the effect this will have on them.

I’m hoping that this group will help me navigate through everything.

  • Hi Georgie6775 and a warm welcome to the forum though sorry you have to be here and your diagnosis. Everyone gets frightened and emotional when told they have cancer and the early days are really difficult to cope with especially the waiting and not knowing. Chemoradiotherapy is often the treatment for T1-T2 tumours with a very good prognosis and the intent to cure. Though I have anal and bowel cancer chemoradiotherapy is not for me, though it was for some of the guys and girls on the forum who be happy to share their experiences and offer advice and support or even just a chat, take care.

    Eddie

  • Hello Georgie6775, welcome to the group. I am glad you found us as many on here know exactly how you are feeling right now. As Eddie has said, the stage you are at is usually the gold standard treatment of five and a half weeks of chemoradiotherapy. Some hospitals have different procedures for giving the chemotherapy and I had the first day of treatment chemo intravenously and on the last day. The radiotherapy days Monday to Friday I took chemotherapy tablets twice a day.  Your concerns about your children I can understand as they are young but of an age you can sit down and talk to them about their mum is going to have treatment but the outcomes are pretty good. I was 66 when diagnosed and remember my oncologist said you are still young and can cope with any side effects you may encounter so you I am assuming by your childrens age you will be fine and you are relatively low at T1-T2. Do you have a partner or member of your family who is able to help as the weeks of treatment start to take effect. I was lucky to have my husband take me to the hospital each day and do the cooking but that was only because I took advantage of this as he normally never cooks so it was nice to be waited on. You may get some fatigue and might be an idea to do some batch cooking for your freezer or ready meals for this time. Once you get a start date you can plan ahead and it’s only just over five weeks but you do continue to have some build up effects from treatment that hang around for a further couple of weeks or so. You can get lots of tips on here on how to manage the side effects but will add you don’t get them all at once. Any questions you want to ask please do as we have all been where you are at now and understand how stressful this time is. 

  • Hi  ,

    Firstly welcome to the Macmillan Online Community although I’m really sorry to hear of your recent diagnosis. Receiving a cancer diagnosis is shocking, it really does rock you to your very core, I remember feeling completely numb when my consultant broke the news to me & that lasted a couple of days then the fear set in! My diagnosis was a little over 6 years ago now & I’ll be 6 years post treatment in June, I’m clear of cancer & doing well. 

    I was diagnosed early, stage 1 T1N0M0, I had a local resection (surgery) as first line treatment & that removed everything but unfortunately the clear margin on a small area was only 1mm therefore further treatment was advised. The chemoradiotherapy is a scary prospect, I have to say I was terrified at the thought of this treatment but it is the gold standard treatment for anal cancer & is generally very effective in offering the best chance of cure. My chemoradiotherapy regime consisted of a 10 minute infusion of mitomycin (chemo) on day 1 of radiotherapy then oral chemo tablets (capecitabine) twice daily each day of radiotherapy. Radiotherapy was Monday to Friday with weekends off all treatment, mine was a little shorter for with me having surgery prior, it was 23 days whereas the standard is 28. The radiotherapy literally takes 10-15 minutes each session & is painless. I had little to no side effects from the chemo side of things, the worst side effect of the radiotherapy was the skin reaction for me, it’s akin to sunburn & can affect people to varying degrees but this builds over the weeks & doesn’t just happen all at once. The combination of both treatments did leave me with fatigue but nothing that an afternoon nap didn’t sort out. 

    You’re bound to be frightened for your children that’s only natural, mine were a little older, my youngest was 16 & just going into her GCSE’s & the guilt I felt when I had to tell her & my parents was immense, I felt I’d burdened them with this awful disease although I knew this was irrational thinking. 

    I hope that I haven’t bombarded you with too much information, if you have any specific questions please don’t be afraid to ask, we’re a very open group & nothing is too personal. We’re here to support you however we can. 

    Nicola 

  • Hello Georgie6775

    This is absolutely the worst time once you have a diagnosis (and I am so sorry that you have) - everything is unknown, totally daunting and utterly terrifying.  In those first weeks I wandered about in an absolute daze and I couldn't even answer the phone.  But once you know the treatment plan and it starts, although there are side effects there is a huge sense of relief that something is being done to rid you of this awful disease.

    It may seem that time is dragging but the team treating you are gathering all the information, scans and tests and devising the best treatment for you, the gold standard has already been explained, and in the planning stages they will mark the area to receive radiotherapy that does the least damage to surrounding tissue.  I feel for you worrying about your children, but them knowing and understanding will be much better than being aware that something is wrong and being kept in the dark.

    I won't bombard you with information right now but please be reassured, we have all been through it and have lots of tips and coping strategies, so when you have your treatment plan, please come back and let us know.

    We are always here to support as well, should you need it.

    Irene xx

  • Hi Georgie6775

    I am sorry to see you have also had this shocking diagnosis.  I think its extra difficult to get your head round as it sounds so awful. People hear about breast, prostate cancer etc so often but 'anal cancer' just sounds awful. When I was diagnosed I thought how can this be happening to me, the only risk factor I seemed to fall under was being a female over 50 (I was 51 when diagnosed).  I've 3 children also older than your family, my youngest is 13 so it is hard to have to tell them but I think it's good to let them know some information but they really don't need to be told very much for them to understand that you are poorly at the moment.  There should be councilling available for your children as well as yourself if you feel you need that support.

    My consultant told me that chemoradiotherapy is the best course of treatment for my stage (& that if I was at best hospital in USA or Europe this would be the treatment plan I would be following,  that helped settle me a bit). The treatment is full on & all consuming for the 5-6 weeks period but honestly you will be surprised how quickly it goes by. Company to & from appointments is great if you have friends/family nearby who can go with you. I was able to drive no problem up until the last week when I was a bit too sore to feel confident to drive. As will be mentioned by most of us a Sitz bath is useful, cotton boxers (from Amazon) and loose, comfy clothing are really good ideas and make sure and use all the creams, lotions etc that the nursing staff will give you and use them regularly even if at first you haven't any side effects start your routine of creams etc as soon as you can. Like others also recommended to me if you need pain relief as treatment continues, dont be shy to ask,  I suffered a bit more than I needed too perhaps by not asking early enough.

    I'm 4 weeks post treatment and can feel improvements every single day.

    Wishing you all the very best for your treatment. 

    Andrea

  • Thank you. I have my husband at home so that’s great. I’m 48 and also my parents aren’t too far away so can hopefully help too.

  • Thank you so much for replying and the information is really useful. It’s great to hear you’ve had a successful outcome.

    I’m hoping for the same.

  • Thank you. Yes, the waiting is the worst. I’ve only had very limited information on my type of cancer so far. I have an ERUS on Thursday and I’m waiting to get a date for my CT-PET. Once they have those results I’m assuming the treatment plan will follow quite quickly.

    I suffer with anxiety already so this time is quite challenging.

  • Thank you for replying.  I’m 48 so quite similar in age to you. Thank you the information.  I’m waiting on an ERUS and CT-PET so my consultant can determine what treatment I need, but it’s been encouraging to read other people’s experiences and positive outcomes.