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Anal squamous cell cancer

5 Dec 2017 20:12

Is there anyone on here who has had anal squamous cell cancer x

Anal squamous cell cancer

7 Dec 2017 14:45 in response to Janelucia

Hi Janelucia, 

I've had a look around the forum and found @JRose ‍ - who will hopefully stop by to say hello now and tell you more about their diagnosis now that I've tagged them in this post - as well as two discussions with members in a similar situation to yourself that you may like to get involved in which I've included here and here for you to have a look at.

I've also included a link to the section on our website about anal cancer so you can find out more about your diagnosis. If you have any questions don't hesitate to get in touch with our cancer nurses on 0808 800 4040, Monday - Friday between 9a.m - 5p.m who will do all they can to help.

Kind regards, 

Steph, Cancer Chat Moderator

Anal squamous cell cancer

8 Dec 2017 11:37 in response to Janelucia

My partner is mid treatment.  Diagnosed in August.  

Anal squamous cell cancer

8 Dec 2017 15:29 in response to Jon123

Thank you for the reply.  How's the treatment going.

Anal squamous cell cancer

17 Dec 2017 23:43 in response to Janelucia

HI Janelucia

Yes, I was diagnosed at Stage 3B nearly 7 years ago.  Not around this site much now because I have been free of cancer for some time.  I had check ups for 5 years with one false alarm and no recurrances.The treatment is wearing but keep going because it works.  Even though I have been left with some side issues I now feel fabulously healthy and my fear that I would never be healthy again was unfounded.  What stage are you at? 

Anal squamous cell cancer

21 Dec 2017 01:22 in response to Janelucia

Hi Janelucia

I was diagnosed with T2squamous cell anal carcinoma in July this year - I underwent 6 weeks of chemoradiation therapy - it was quite tough I found the tiredness really hard and my skin broke out quite badly. My specialist nurse was a god send she helped with pain relief and grat creams for my skin. 

I had my eight week follow up apt just over a week ago and although I’ve to get a scan in Feb next year my consultant was able to tell from an examination that there was no longer any abnormality. To be given this news was just amazing and although I still have to get the scan and will be monitored for three years there is light at the end of the tunnel.

I found it hard to find many people who had been diagnosed with this Type of cancer but I had fantastic support from the staff at the Beatson in Glasgow and I have been going to the Maggies centre and took part in done sessions got relaxation amongst other topics which I found really helpful. 

I wish you all the very best with your treatment and if there is anything else you’d like to ask please get in touch.

kind regards Sandra 

Anal squamous cell cancer

21 Dec 2017 09:37 in response to SandsJ

Hello Sandra,  Thank you so so much for getting in contact.  I'm now two weeks in too treatment.  really really tired all the time but am making sure I sleep when I need to.

Anal squamous cell cancer

22 Dec 2017 15:29 in response to Janelucia

Hi Janelucia I found as the weeks went on I did get more and more tired- I’ll be honest the couple of weeks after I finished were actually the worst for me. But do sleep when you can and don’t feel guilty about it - it’s the best way for your body to recover. Also if you do get sore let your nurses know as soon as possible as they can give you pain killers I persevered for  a bit too long - and as they told me you really don’t have to suffer pain.

I’m now 10 weeks post treatment and although I do feel I’m getting stronger I still get very tired but I’ve learnt to take it easy if I’ve had a busy few days and have “lazy” days! I found the driving for treatment every day took its toll so took all the help offered as someone said it lets your friends and family feel useful and able to help you in some way.

I wish you well over the next few weeks and let me know how you’re travelling- take care.

Sandra 

 

 

 

 

Anal squamous cell cancer

28 Dec 2017 22:39 in response to janojan

Hello Janojan

Hope you don’t mind me messaging you - really good to r ad your post and delighted that you got a good outcome.

Im now about 11 weeks post treatment and doctor pleased with my progress can I just ask you - does the tiredness go away eventually? I find if I do too much one day I’m exhausted the next - hoping to start getting back into an exercise routines be in the new year which might actually help?

Thanks Sandra 

Anal squamous cell cancer

29 Dec 2017 15:36 in response to Janelucia

Hi I hope you are doing ok I have been diagnosed and am waiting to start treatment in January I have my planning on the 10 th .its so difficult to find info on this type of cancer . The waiting is the worst!  

Anal squamous cell cancer

29 Dec 2017 15:57 in response to gilliebean

Hello, im three weeks in to treatment now and just pray its working.  

Anal squamous cell cancer

29 Dec 2017 16:34 in response to gilliebean

Hi Gilliebean

I agree the waiting is definitely the worst bit and I was the same when I got diagnosed couldn’t find anyone else who had been through it. As you’ll see from my post above I’m now 11 weeks post treatment and doing really well I’ve still to get a scan in February but from my last examination about three weeks weeks ago there was no sign of the tumour so I am staying positive. 

I don’t know where the y live but I’m in Glasgow and got amazing support from the Beatson and in particular my specialist nurse. I also went and still go to the Maggies centres they’re great. 

If there is anything you want to ask me please feel free to message me as I wish I had had someone to talk to when I was starting out. 

Wishing you well over the coming weeks

Kind regards Sandra

 

Anal squamous cell cancer

29 Dec 2017 16:38 in response to Janelucia

Hi Janelucia

I had been thinking about you and hoping you are getting on ok - I know it’s not easy but try to stay positive and be kind to yourself rest when you  can and even though I’m sure there will be days that are hard you will get through it.

I had  a countdown calendar and found it good to score off every day after another treatment was completed. Anything to try and stay positive.

 Take care 

kind regards Sandra

 

Anal squamous cell cancer

29 Dec 2017 16:42 in response to SandsJ

Sandra, do you know how big your tumour was at the start x

Anal squamous cell cancer

29 Dec 2017 18:13 in response to Janelucia

Hi it was T2 and was bigger than 2 but less than 5cm’s I don’t know if that helps or not - have they told you about the size of yours? x

Anal squamous cell cancer

29 Dec 2017 19:58 in response to SandsJ

T2 N1 M0 is what I've been told 

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

 

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 !  

Anal squamous cell cancer

29 Dec 2017 20:23 in response to gilliebean

Forgot to say I m having chemo and radiotherapy

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

 

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

 

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

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

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

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

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

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

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

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.

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