Hi MrsH2010,

Welcome to Cancer Chat. I hope someone will be along soon to chat who has experience of what you are going through.

Here's a link to some our cancer information website to the section on anal cancer (in case you haven't already seen it).

Our specialist nurses are online from 2pm-3pm today (UK time). If you have any specific questions, they will be happy to help.

Best wishes

Renata

Cancer Chat Moderator

Hi There,

  Sorry to hear about your diagnosis but welcome to the forum and I hope you will find some on here who may have experience of this condition.  While I do not know a great deal about Anal Cancer I was diagnosed at a similar staging with rectal cancer in 2010 with a sigmoidoscopy having identified a tumour just where my anus met the lower colon. I underwent 6 weeks of chemotherapy (tablets) and radiotherapy followed by an operation where my anus was removed and I now have a permanent colostomy. Now as dramatic as this may sound I am fine after all this and live my life just as I have always done with no one being aware I have a colostomy unless I volunteer the information. It may sound silly to say this but one of the advantages of having cancer in this area is that it can be easily targeted with radiotherapy, unlike higher up the colon where the colon itself moves about a bit with normal internal activities. After my treatment during the operation they could find no evidence whatsoever of the tumour at the location where it had been and subsequent biopsies of the material removed could find no evidence of cancer at all. Subsequent scans have all been clear. It is arguable that the operation was necessary but I have no regrets and am just happy that I am through this and getting on with my life.

I would try to avoid searching on the Internet on your condition as you will find sites that have no bearing on it whatsoever and will just depress you. I found myself doing this and it was a huge mistake. I kept looking for some positives to counteract every negative that I found and just kept going on and on.Stick to sites like this where you will find information on anal cancer or the Macmillan site, both of these giving clear and concise information on specific cancers and treatment. The nurses are also happy to hear from you and answer any questions that you may have. At this stage your mind will visit many dark places which invariably never happen in reality so try to keep positive as you are on a journey and while there may be many twists and turns on this journey you are now heading in the right direction as you have a plan.

Also try to avoid statistics for two basic reasons. First they are invariably at least 7 years out of date by the time you see them and treatments have moved on in leaps and bounds since then as can be seen from the latest Macmillan research on this. Secondly we are all individuals and respond differently to treatments and the disease and it affects us all in different ways. If statistics are split into groups by sex, age, ethnic origin, etc there are huge variations so do not put a lot of store in these.

I wish you all the very best on your journey and hope that you respond well to your treatments . Please keep us informed of how you are getting on and there are many on here who will I am sure will soon be along to give their experiences and advice. Take care .

Graham

Hi MrsH2010,

I'm so sorry to hear of your diagnosis but I know how you feel because almost a year ago I was also diagnosed with stage 3B anal cancer - T2 (originallyT3 but downgraded), N2.  Like you I put off going to the doctors through embarrassment (actually I thought they were anal warts and I thought my partner would never believe I hadn't been playing away).  When I finally went they said they were skin flaps and it took 9 months to get a biopsy.  It's very very common with this cancer to be misdiagnosed.  I was also terrified that I would have mets because I knew from the beginning that I was stage 3B because my inguinals were swollen,

Now the good news.  This  cancer is very treatable.  I had the chemoradiation and whilst it is not an easy treatment I got through it and so will you.   If you search my posts I put some quite extensive notes on them about the treatment (I don't think you'll find it on the links as I didn't put any link words in at the time).  If the treatment is successful (and so far mine has been - yippee, yippee) you won't need any further treatment.  If it's not completely successful you can have surgery - although that is very scarey I know. Graham says not to look at statistics and I think that is sensible advice overall - some on them on anal cancer are certainly very misleading (including by the way the ones on this website).  I checked with my oncologists - my first one said my chances of successful treatment was 80% but I didn't really believe him because he was the one who told me they were skin flaps so I checked with the radiation oncologist and she said 60% because of the stage I was at.

You are going to be fine MrsH2010.  Some of the Amercian websites have specialist sections on anal cancer and you will find lots of survivors there and lots of advice.   I'm not sure if I am supposed to put the websites on here but if you want to PM me I can give you the details.

Very very good luck with the treatment.  Please come back if you have any worries and to tell us how you are getting along.

Jan xx

Hi Mrs. H, I have now had 2 operations for Colon Cancer (lower bowel) so although not the same, very near! As I am in my 30s with 2 kids I was also told it was probably piles and then probably Colitis but yes it was cancer. I just wanted to say I am here if you want to talk. Mentally I am in a very good place now and have a sense of humour and good friends who have helped me no end! I also had the MRI and the CT and various other things and I think just being quite philosophical has helped me. I want to wish you well and say I am here if you need a chat or a laugh or a cry or anything really. Lots of love to you x

Hi there

I too have stage 3 bowel ( rectal) cancer so very similar to yourself. I was also misdiagnosed etc. but once the treatment got started I felt more in control. I had 5 weeks intensive radiochemo and burnt quite badly but it did the trick and shrunk the tumour prior to my op ( can i say at this point if you get buring when you pass water insist that you see a docotr for a good strong painkiller they kept trying to tell me to drink cranberry juice!- i ended up on liquid morphine)

I had my op in november 2011 with the abdominal being done keyhole surgery. My surgeon said the margins were clear so thats good news. My recovery has been good though my rectal wound is still not completly healed - I was warned this would be slow because of the radiation.

I have a permenant bag however I now use the irrigation method every other day so am able to just wear a stoma cap - very liberating ( if you want to know more send me a private message and i'll chat with you)

Try to keep busy and keep positive - I am 100% sure being positive helps recovery

take care

love , hugs and prayers

stef xx

Hi,

I am new to this forum, decided to get some further information about my cancer and found the discussions site.  I am now 5 years and 3 months post treatment for anal cancer.  The treatment was horrendous at the time and I have been left with residual problems. Important thing is I am still here and leaving a fairly normal life.  Hope any of you who have had this disease or are starting or having treatment are coping.  If can be of any help would be glad to? 

Hi, am new to this forum.  I think by now you will have finished treatment and I was just waondering how you are doing?  I am 5 years 3 months post treatment for this disease and would love to hear from you.  Best wishes.

Hallo I’ve finished chemoradiotherapy at the end of july.vome through it ok Ouch it wasn’t an easy journey .iv been told is has gone. It was stage 2 anal cancer .i hav an op to remove it before the treatment but they didn’t get it all at the time. I would like to ask anyone who has had this has it left you with fecal incontinence and bladder incontinence . also I’m am completely numb in the anal area. I don’t wanna be moaning I just need some info as to where could be done. Thankyou for reading this and I wish you all  a good recovery. Regards mary