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Re: Anal squamous cell cancer

29 Dec 2017 19:58 in response to SandsJ

T2 N1 M0 is what I've been told 

Re: Anal squamous cell cancer

29 Dec 2017 20:12 in response to Janelucia

Hi

Are you getting chemo and radiotherapy?

One of the best bits of advice I got was just take it a day at a time and write down any questions you have (when they pop into your head - for me usually at 3 in the morning) and don’t be afraid to ask your doctor/nurse or radiographer they are the ones that can help you most. 

I hope you have lots of support around you as you can feel very lonely at times.

Sx

 

Re: Anal squamous cell cancer

29 Dec 2017 20:21 in response to SandsJ

Oh wow I didn't expect a response so quickly, it is comforting to know that I am not alone with this type of cancer mine had already spread to one of my lymph nodes in the groin which they have removed as they couldn't find the primary , I had a colonoscopy and a sigmoidoscopy but they missed it both times, mine was picked up on a pet scan and then a biopsy done which confirmed the site. I ve been worried about the length of treatment because the surgeon told me 6 months! Seems rather a long time I m wondering if he meant 6 weeks!  Also the waiting for treatment is worrying as I keep thinking it may be spreading, I phoned the cancer nurse and she told me not to worry as the chemo would get any stray cells but I still can't help worrying. It's embarrassing isn't it being anal !  

Re: Anal squamous cell cancer

29 Dec 2017 20:23 in response to gilliebean

Forgot to say I m having chemo and radiotherapy

Re: Anal squamous cell cancer

29 Dec 2017 20:49 in response to gilliebean

I'm having both over a six week period. First and last week is chemo.  The chemo us 5FU and I carry it with me in a small baby like bottle x

 

Re: Anal squamous cell cancer

29 Dec 2017 20:50 in response to gilliebean

Hello 

Yes I found it quite hard to come to terms with too -  hate the word “anal” so it was “bum” cancer all the way for me - had to joke about it was only way I could deal with it! Can’t believe there are now three of us on here with the same thing!

I was lucky in that I didn’t need surgery and had 6 weeks chemo radiation - as I said to JaneLucia please don’t be afraid to ask questions at first I felt like I was being a Nusiance  but as my specialist nurse pointed it / it was me going through it and I had every right to ask and get answers. 

Mine got picked up after a colonoscopy that my doctor arranged after an examination and I was very lucky in that it was all dealt with really quickly. 

Hopefully after your planning session on the 10th you will feel a bit more in control. 

Take care thinking of you

Kind regards Sandra x

 

Re: Anal squamous cell cancer

29 Dec 2017 20:56 in response to Janelucia

My first chemo was intravenously then 4 tablets morning and night on days of radiotherapy - I wasn’t good with the intravenous one but once got used to tablets wasn’t too bad. Wasn’t sick and the hair loss (below the last waist saved in expilation costs - every cloud and that )

Sx

Re: Anal squamous cell cancer

29 Dec 2017 21:08 in response to SandsJ
Hi Sandra - yes I'm pleased to say the tiredness does go away. I spent a lot of time in bed during and after treatment - looking back I would say that some of it was depression though. I was left unable to sit or walk properly but as I healed I started to go for daily walks - I remember crying the first time I was out - it felt so good. I got frustrated at walking so slowly and decided I was going to push myself and started walking as quickly as I could. It was all plain sailing from then and a few months later I was out hill walking with my partner and leaving him behind. He said he never could have imagined it. Last year I started riding a bicycle and a horse again - just to show that I could - it was the final hurdle. I am sure you will regain your strength in your own way and wish you luck with the follow up scans - I know how scarey they can be. x

Re: Anal squamous cell cancer

29 Dec 2017 21:21 in response to janojan

Awh thank you so much for the reply - I’m determined to start exercising more in the new year - once we get rid of all this snow and horrible weather.

Its so good to hear that you’ve had such a positive outcome and gives hope for the future. 

My best friend made me a padded ring which was a godsend I think she should go into business! 

Wishing you continued good health

warmest regards Sandra x

Re: Anal squamous cell cancer

30 Dec 2017 18:05 in response to Janelucia
I was feeling quite isolated as this type of cancer is quite rare but having found you and Sandra have a real positive feeling now I m so thankful, I ve been thinking about you going through this at the moment you ll just be finishing as I m starting I expect. I m in Hampshire .i bet the days that you have chemo and radiation together are pretty grim are they? Sending you lots of positive vibes that's another day you can tick off x

Re: Anal squamous cell cancer

30 Dec 2017 18:08 in response to janojan

That's wonderful to know that you ve come out the other side hope things remain good for you x

Re: Anal squamous cell cancer

30 Dec 2017 18:12 in response to SandsJ

Thanks for the reply , I do feel so much better now ,I d almost written myself off but you have given me so much hope now thank you x

Re: Anal squamous cell cancer

30 Dec 2017 22:01 in response to gilliebean

I know exactly how you feel - totally isolated-  I was the same at first and I’ll admit I did find the treatment tough there were a lot of tears and feeling sorry for myself. As the weeks progressed there was quite a fair bit of discomfort and pain but again my specialist nurse was amazing take all the lotions potions and painkiller they give you. 

Six weeks felt like a lifetime that would never end but by ticking it off each day I got through it - please don’t write yourself off you’ll get through it too. 

Im just home from a lovely day with family and friends which if you’d told me even a few weeks ago I’d be doing I wouldn’t have believed I’d be out and about again and even partaking of a few wines!

Stay positive and please in touch i’ll be thinking if you 

Sx

Re: Anal squamous cell cancer

3 Jan 2018 04:17 in response to Janelucia

Hello Janelucia,  I just discovered this website.  I am a 67 year old female and I live in Texas.  I was misdiagnosed with internal hemorrhoids by two doctors last year.  I had a colonoscopy in 2013 and we believe it was overlooked at that time.  It can lay dormant for 10-30 years.  By the time I got an appointment for a third opinion, the mass was quite large (T3) and into the wall.  I was very ill.  One lymph node lite up during a PET scan and they said the vagina was questionable.  So they went after all of it.  I completed chemo and radiation October 10th, 2017.  I will find out if the treatment was successful in early February after a CAT scan in late January.  

I have been skinny my whole life and my weight started plummeting before treatment started.  I didn't have any fighting weight and had a harder time of it than possibly someone at a healthier weight and in relatively good shape to start with.  I think the trick is to drink tons of water after chemo to flush it out of your system, eat small portions throughout the day and follow a soft diet.  I wanted to sleep until treatment was over, but it's better to stay active.  Most people don't notice any side effects of treatment for the first 2 - 2 1/2 weeks.

I'm hoping the treatment breezes by for you and is completely successful.  Sending warm thoughts your way.  Let me know if you would like to discuss privately and I'll send you my email address.

Re: Anal squamous cell cancer

5 Jan 2018 10:29 in response to SandsJ

Ah thank you for the advice , I can't wait to start treatment as I fear it may be spreading I am having night sweats and pains in my other groin and niggles here and there ,your mind starts running away with you , I phoned the cancer nurse and she told me not to worry ,that the chemo would get any cells but I m still worried! I know the road ahead is going to be tough but it's great to know that you have come out the other side. Thanks for the support it's so nice to have someone who knows what it's like , have been thinking of janelucia also going through it right now! Planning on Wednesday! So treatment should be starting soon!  GoGo