Hi,
I have just been diagnosed with anal cancer.
I'm 34 years old with 3 children 14, 10 and 9 weeks old. Started suffering with what I was told was piles after having my little one 9 weeks ago. The pain was so severe I was on the phone to my gp every few days in tears explaining I was in agony and it wasn't going away just getting bigger. She refused to see me and kept telling me to use creams and it would go away. 5 weeks post partum I went to a&e where after examination I was told I had rectal prolapse but then seen by a surgeon who said no it was prolapsed piles and sent home with more cream. Well this pile continued to get worse so went back to a&e on the 23rd march and demanded something was done. Finally they listened and took me seriously as I now had a swollen vagina and discharge from this area. A CT scan was done and found a large mass around 5cm inside my anus so had biopsy done and more scans. On the 31st I was told the devastating news and the "prolapsed pile" is infact a tumour. I was discharged on the 2nd april with lots of medication for the excruciating pain as they wont remove the tumor on the outside as surgeon said radiotherapy has a greater success rate but not with a open wound. I have my first appointment with doctor at christies hospital next week to discuss stage and treatment.
This has came as such a shock to me and my family and i am absolutely terrified.
Would love to speak with people that have been through this or are going through this at the moment.
Thank you x
Hi Will beat this,
Firstly let me welcome you to the online community although I’m really sorry that you find yourself here. This has to be so difficult especially with such a young baby too.
Unfortunately you’ve experienced a route to diagnosis that is all too common! Many of our members here have also been misdiagnosed with haemorrhoids prior to their actual diagnosis of anal cancer. This really does need to change & Dr’s need to up their game & start querying anal cancer rather than just jumping straight to a diagnosis of haemorrhoids as sadly the numbers of people diagnosed with anal cancer is on the up!
Surgery for anal cancer is only viable if you’re diagnosed very early on as the risks outweigh the benefits any later. The most common of anal cancers is SCC (squamous cell carcinoma). The standard treatment for anal cancer is chemoradiotherapy & is an efficient treatment. Here in the UK this usually comprises of a short infusion of mitomycin (chemo) on day 1 of treatment then 28 days of radiotherapy (Monday to Friday, weekends off) with capecitabine tablets (chemo) taken twice a day on the days of radiotherapy. The treatment is short & sharp but there’s lots of us here that are through the other side & back living our lives, if you click on my username you can read a little about my journey there, I’m now 3 years post treatment & to the best of my knowledge still NED (no evidence of disease).
Please be assured we’ve all been where you are now & felt those feelings you’re describing so you’re amongst people that understand what you’re going through. We have members like myself that are through the other side of treatment, some that are in treatment & others like yourself that are right at the beginning & we’re here to support each other through this rollercoaster of a ride. Please don’t be afraid to ask any questions you have, however personal they may seem, I can guarantee that we’ve all asked them at some point. We have a lovely open bunch of people here & it’s not a place that’s all doom & gloom, there’s a lot of dry humour here & although you’re probably in the darkest of places right now I hope we can offer you a little light at the end of the tunnel. This site really was my saving grace following my diagnosis.
Nicola
Thank you for your reply 
it's reassuring to know you are now 3 years post treatment and doing well. Can I ask if yours was on the outside as well as inside? The excruciating pain I'm in is because of the tumour coming out of my anus it is very large and it will definetley need removed at some point. If it wasn't for that I would feel great I've had no symptoms anything was wrong until this started to grow I'm in agony all the time they have put me on mst's, pregabalin, paracetamol and oramorph for the pain and it still dosent take it away fully. I'm so scared also as how bad the treatment will affect me does chemoradiotherapy make you very ill and do you have to stay in hospital for treatment as I live a hour away from the hospital. My partner has had to give up work to care for me and the children as I struggle to do everyday tasks because of the pain.
X
Hi again Will beat this,
My tumour was located on the anal verge, I had an external polyp & my tumour was growing inward from behind the polyp, I had a lump internally that strangely seemed to come & go a couple of times! Like you I had no other symptoms it was just the fact that this polyp had bled a little & slightly changed in shape that took me to the GP.
The fear you have of treatment is completely natural, from my experience the thought of it was much worse than the experience itself. I had little to no side effects from the chemo side of things, my oncologist told me you don’t get the severe side effects from oral chemo that you would going through cycles of infusions & he was right, my hair thinned a little but nothing that anyone else noticed, I had a couple of mouth ulcers in the first week but I don’t know if they were just because I was generally run down. Side effects from the radiotherapy are mainly skin reactions, they vary from person to person but your radiology team & Dr’s will have plenty of lotions & potions on hand to deal with these. You are treated as an outpatient & you should get a schedule with daily appointments for the whole of your treatment so you can plan your journeys.
Hope that helps ease your worries a little.
Nicola
Hi & welcome from me too. The way you’ve asserted yourself in the face of incompetence is impressive!
The diagnosis really does come as a shock, doesn’t it. I was also terrified of chemo but as Nikki65 has said, the side effects with chemoradiotherapy are different to the nightmare scenarios of losing your hair etc.
If you click on my name you’ll see my tumour was a tad bigger than yours (size really does matter!) & the pain before treatment was so intense that sitting or standing were unbearable. But a few weeks into treatment the swelling around the tumour got smaller & the pain disappeared.
Nicola described the “gold standard” treatment of chemoradiotherapy (CRT) which has a high success rate. I finished treatment 6 months ago & now I’m walking about 4 miles a day to get back to being fit.
In a few days when you get over the shock you’ll find it a lot easier to cope. We never get tired of people dropping in here to ask Qs, moan or rant
Toni
Hi Will beat this and welcome, I'm sorry to hear you've had a delay in diagnosis, we see a lot of initial diagnoses of piles. Anyway, at least you now have a diagnosis. Christies has an excellent reputation and I am sure you will be in safe hands there. Fortunately, anal cancer does have a high cure rat. The combination of chemo and radiotherapy is very effective at melting away large tumours without the need for surgery. Don't worry too much about the side effects of the chemo, I felt nauseous for about 5 days in the first week but after that had no side effects from it. The radiotherapy is of about 10-15 minutes for each of the 28 sessions. Please have a look at my profile, I am 20 months post-treatment and currently still clear. A cancer diagnosis is terrifying but please just bear in mind the high treatment success rate for this type of cancer. Please always feel you can reach out to us on here for support. Bev x
Yes it’s scary at this stage because as it gets worse, you don’t have a treatment plan yet & you lose trust in your body. This phase will end!
Mine started suddenly last April during a painful constipation & I got diagnosed about 3 months later. Each new growth was scary & depressing.
With hindsight I’d have worried a lot less about what was visible!
It might be a good idea to write a list of questions to take to Christie’s especially about timeframes & painkillers - & maybe a referral to the local palliative care team who specialise in painkillers & may help with benefits & other invaluable help & advice - my palliative team are amazing, totally on my side, & always make time for me.
Good luck tomorrow! Toni
