Hello all

Welcome here - we may be based in the UK but have members far and wide!  But I am so sorry you had to find us in the first place.  Getting the diagnosis is shocking and all of us can remember the moment we were told.  But your team are getting everything in place for your treatment.  We can all offer lots of advice but it is all a lot to take on in the early days.  I found the treatment quite brutal, but doable, and the blessing (if you can call it that) is that it is quite short, and once it is over it is a bit like childbirth - you forget the awful bits.  So please come back once you have become accustomed to the news, and ask us anything at all - talk about the nether regions and bodily functions are the norm here so please don't hesitate.  The unknown is very scary but please remember you are not alone - everyone on here has been or are going through it.

Irene xx

Thank you for replying.I am taking this diagnosis one step at a time.Yes the unknown path ahead is scary but I have a strong mind and body(so I tell myself) and I keep positive.This is all part of my life journey.I will let you know how strong I am once I start treatment. 

Thanks

Sue

Hi Susin ,

I’d like to second Irene’s welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us.

Worldwide the treatment for anal cancer is a similar regime, the radiotherapy side is predominantly the same it’s just the delivery of the chemo that seems to vary. Here in the UK the chemo is generally a short infusion of Mitomycin on day 1 of treatment then oral Capecitabine tablets twice a day thereafter. In the US it’s often a chemo pump delivering a measured dose during week 1 & week 5 of treatment with weeks 2, 3 & 4 radiotherapy only. We’ve had a couple of members from Australia over the time I’ve been here but I honestly can’t remember which regime they were on.

The unknown is scary & a cancer diagnosis puts you on high alert that’s for sure. There are some similarities that carry through this diagnosis & subsequent treatment but yes you’re right in saying that everyone’s experience/journey is different & I found it best to try & take things a day at a time. I had read some awful stories about the treatment but in all honesty I got through it well, the couple of weeks after my treatment had finished were a bit ropey but aside from that I did ok & I’m now 4.5 years post treatment & NED (no evidence of disease) to date as far as I’m aware. 

We’re here to offer support to each other & there’s people here at all different stages of their journey, some like yourself are newly diagnosed, some are going through treatment & others like myself are through the other side back living our lives. So please if you have any questions, no matter how personal they seem, just ask I can guarantee it’s been asked before. 

Good luck with your MRI on Friday & your oncology meeting on Monday & if you feel up to it let us know how it goes. 

Nicola 

Hi Seus, 

I'm in the US and so glad I was able to join this group! Wish I'd found it, as you have, before the treatment started, but better late than never.

We're all a bit different but have a lot of the same side effects and challenges. It's good to have folks to commiserate with.

Hoping your experince is one of the easier ones. Keep us posted.

Suz

Hi,

Had to postpone my oncology meeting as I have Covid.Just feels like a mild cold nothing much.Lucky I am vaccinated.

New meeting date is next Monday.When I find out my treatment regime I will let you know and see what the differences are.

Again thanks for allowing me to be part of your group.

Sue

Hey Susin  isn’t that just typical? I’m pleased you only seem to have mild symptoms though, take care of yourself & I hope your appointment next Monday goes well. 

Nicola 

Thanks.I feel fine but still testing positive.More annoying than anything as I have had my covid vaccinations  but can't work.I have my own business working with people with disabilities so can't compromise anyone.I have always worn a mask working or not.These things happen.Took a nice drive to the beach today which I love any 30 mins from home.Cant wait for a negative result.

Thanks

Hi

First radiology appointment is 4th January.The regime and treatment is the same as yours.Day 1 is radiation and Mitomycin.After that on the days I have Radiation I take Capecitabine tablets twice daily.This treatment is for 6 weeks.Will let you know How I go and how I am feeling along the way.

Merry Xmas and a fresh start to all in the New Year.xx

Merry Christmas to you. Once your treatment is underway you can get into a routine and count down the days till you've finished it. Let us know how you're getting on. xx