Sort of New :-)

  • 14 replies
  • 56 subscribers
  • 680 views

Hello All

I joined the group a while ago, but this is the first time I’ve posted. I’ve read lots of posts and found lots of useful info along with some that has come as a bit of a shock! But, it’s better to know what’s ahead and have time to process it.

I was diagnosed with anal cancer in November last year and was lucky that they were able to remove most of the mass, however the biopsy showed AIN III in the margin so I’ve been told I will need to be referred to the Homerton Hospital for monitoring following my treatment.

After a long and anxious wait I finally had my first face to face appointment on Monday and a further biopsy yesterday. I start treatment in mid February. Everything seems to be happening very quickly.

Has anyone else been referred to the Homerton? The thought of the AIN is daunting as the consultant has said that the chemo/radio won’t cure it. It feels like even after treatment, it will be a ticking time bomb!

Anyway, sending love, hugs and strength to all my cancer comrades 

June xxx

  • Hello June

    I am really pleased you have posted now and that you found the posts helpful, a warm welcome to the forum.  I don't know much, in fact very little about AIN III, but it sounds as if your team isn't leaving anything to chance and you will always be closely monitored.

    The chemo/radiotherapy can be brutal but it is very short, get a calendar and score off these days!  You may have been alarmed at reading about some of the side effects.  However, there are quite a few on here who managed quite well, and remember if you do start to get side effects, they don't all come at once.  I had quite severe sores but the team treating me were absolutely brilliant, I saw them weekly and they topped me up with pain relief and creams and potions - if something didn't work, they tried something else.  And now here I am, not quite as I was before but very glad to be out walking my dog every day and enjoying life.

    We have lots of coping tips, not least the Sitzbath, but if you have read lots of posts I am sure you will know about that.  We will all be thinking about you when you start treatment and please remember we are always here to offer support should you need it.

    Irene xx 

  • Hi June, 

    So sorry for the need to be here, but glad you've found this wonderful forum!

    I'm confused, though. If the chemo/rad treatment won't cure the AIN, why do you need to go through it? Getting cured was what kept me chugging along!

    It's good that everything goes so quickly at the beginning. Please please keep us posted.

    Hugs

    Suz

  • Thank you so much for your reply, Irene. It really does help to hear from people who have been through this horrible illness and come out the other side. Although, of course, I’m sorry that you have been through it.

    I started to write a post several times before but couldn’t find any words except HELP!!!! I am feeling in a much better place now that I know a plan is in place. 

    thank you for all your fantastic advice. I’ve just ordered a sitz bath…… never ever thought I’d need one of those, but ca la vie! And, I think it’s such a great idea to record the dates on a calendar to mark of. I’ll definitely be doing that!

    Thank you for putting a bit of perspective on the side affects of treatment. I realise that I’ve been imagining a worst case scenario, but I just need to wait and see. 

    Thank you 

    June xx

  • Hi Suz

    Thank you for your response. I have seen you reply to many posts on here and you are always so kind, reassuring and down to earth.

    To be honest I’m still trying to get my head around the AIN thing myself as I only found out about this on Monday. So, as I understand it, I was diagnosed with squamous cell carcinoma T1. This was removed, but the biopsy showed that there was AIN in the margin. They are giving me radiotherapy and chemo daily rather than just weeks 1 & 5. I don’t know why, but I will ask when I go for the planning meeting next week. I assumed that the treatment would also tackle the AIN, but the consultant said it would not because it’s pre-cancerous rather than cancerous. It didn’t make much sense to me either! 

    Maybe I will ask about that again, too…… I will keep you posted.

    Thank you so much for caring :-)

    June xx 

  • June

    Hospitals have different protocols in delivering the chemo - I had chemo daily alongside the radiotherapy and I managed - I didn't think I would ever manage to swallow the tablets but I think it must have been mind over matter! Other hospitals have intravenous chemo delivered the first and fifth week of treatment.  Both methods seem to be accepted treatment alongside radiotherapy.

    Thinking of you.

    Irene x

  • Hi June ( ),

    Firstly welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us.

    Like Suz I can’t understand how the chemoradiotherapy wouldn’t deal with the AIN. I went down a similar path to yourself with a local resection as first line treatment for a T1N0M0 diagnosis of squamous cell carcinoma anal cancer. My margins were clear although a tiny portion was only 1mm clear which is cut off point for further treatment therefore I was advised to have chemoradiotherapy.

    From what I understand AIN 1,2 & 3 are precursors to anal cancer (although not all AIN turns into cancer) so are closely monitored, in my head if they’re treating the area affected with chemoradiotherapy then surely it should resolve it. As with anal cancer AIN can be caused by HPV so I’m wondering if this is what your consultant is talking about, meaning that the cause of the AIN/anal cancer won’t be cured. 

    Once the ball starts rolling in preparation for treatment it does tend to move pretty quickly, an endless round of planning appointments etc., but it keeps you busy in the weeks leading up to your treatment. 

    Although there are some common threads that flow through side effects from this treatment my advice would be to take it one day at s time as we’re all individuals & respond accordingly. 

    Please just ask if you’ve any questions, most of us here have been where you are now so we completely understand & we’re here to support you however we can. 

    Nicola 

  • Hi Irene

    thank you so much for explaining that. I think subconsciously I was imagining that my case is super bad to need daily chemo…. Catastrophising! Blush I’m not too great with pills either but will get them down somehow.

    Thank you for coming back to me.

    june xx

  • Thank you so much for your response Nicola. It’s so good to talk to people who understand what this is like. I wish I’d reached out sooner, but better late than never!

    Yes, the more I think about it, the more puzzling the AIN business seems. I have a telephone appointment with my consultant tomorrow, so will ask her to explain again. I’ve got the planning appointment on Thursday and then will start treatment on the 12th Feb. When I think about the end date - 20th March, it doesn’t seem so very far away. I’m just going to focus on that now.

    Thank you and take care 

    June xx

  • Thanks for the lovely words, June, and please let us know what they say, I'd love to have clarity on this issue!

    Hugs

    Suz

  • Hi again June (  ),

    I hope you get some clarity tomorrow, you’ll have to let us know the explanation, I’d definitely be interested. 

    Once you begin your treatment & get into the routine of the daily hospital visits you’ll find the time passes a lot quicker than expected. I received a treatment schedule when I begun my treatment & would carry a bright pink highlighter pen with me & as soon as we were out & on our way home I’d take great pleasure in putting a big old line through that days appointment,  it was great to see the marked off appointments soon outnumbering the upcoming ones, I found it really cathartic. 

    Wishing you the very best of luck for your planning appointment on Thursday & with your telephone appointment tomorrow. 

    Nicola