Anal cancer abutting the vagina - anyone else had this?

Hello Willow26 

My tumour was in the rectum, so I am sorry, I can't help there.  However, in most cases the triangle between the hips and below, as in where a skimpy bikini bottom might cover, is treated by radiotherapy.  Although the radiotherapy is targeted at the tumour there is usually inflammation in the general area as it is an intense treatment.  However many forum members have experienced rapid shrinkage of their tumour once radiotherapy starts and symptoms ease.

Please don't forget side effects don't all come at once and not until well into treatment.  The team treating you will keep a very close eye on you all through the chemo/radiotherapy course and if at any point you are finding it very painful please let them know; the are normally very responsive and have an array of medication that can be prescribed the same day.  Some forum members experienced what is similar to sunburn in the area, others had more severe side effects but again were helped by the team.  It would be a good idea to start heavy moisturising in the whole area right now, you will be asked not to wear creams before your session but keep up with the moisturising at all other times.  Many forum members used a product called StrataXRT which is the exception and and a very thin layer protects the skin during treatment.  It is very expensive and unfortunately not available on the NHS but can be bought online.

And please don't worry about any question you ask on here - that is exactly what this forum is for.  We are all here to support each other.

Big hug

Irene xx

 Irene75359 Thank you Irene, this makes lots of sense. I am so grateful for this wonderful community. There is such a sense of support. I will try not to panic so much! Its the unknown isn't it. Thanks again for coming back to me xx

Hello Willow,

Welcome, I think Irene has given you all the information you might need but I just wanted to add that my anal tumour was right next door to my vagina, and caused me a lot of discomfort  before it was diagnosed - if that's what abutting means, sorry I am not sure about the definition. I'm also not sure whether you have been told you are at increased risk of rectovaginal fistula but the radiotherapy team who are treating you will have all your medical notes and will be watching how you get on carefully. That said, if you feel any sort of pain or discomfort or bleeding, mention it to them right away. 

You are likely to have some sort of skin burning but again you will be given some specialist cream for this, and in the meantime, keep the area well moisturised, just to give your skin a little bit of a head start.

It is all quite overwhelming when you first get that diagnosis but once you get started you will feel much better, and that you have things under control. My tumour was pretty painful but I realised just a few days in to treatment that the pain had gone; that was the first small win really. As far as mentally preparing, I would suggest you consider this period as a time of preparation or training. Make sure you eat and drink well, moisturise your bikini area. Think about preparing meals and buying small snacks you might enjoy so that if your taste changes, or you feel a bit off colour you will still have things handy. Also get some movies or books lined up as you may well need to take things easy.  

You might also find it useful to have a look at a sitz bath or peri bottle. Both are soothing and effective ways of keeping the area clean without scraping with toilet paper if it starts to become sore. 

Please stay in touch with us here, and let us know how you get on. xxx

 Mrs Vanilla Thank you so, so much. It is such a relief to hear someone has had the same position of tumour and been ok. I think I am googling too much and getting myself in a spin! I have a sitz bath, shewee, peri bottle and lots of baggy boxers! (Though commando seems common!).

I cannnot tell you how wonderful it is to have this safe space and support. It means the world.

Thank You for taking the time to write back and reassure - I love the idea of the pressure and discomfort reducing from the tumour - worth the burns and blisters!!! I still wonder how it was missed - by me and then by the GP and the lady who did my smear three weeks ago!!!!

Willow xx

You are most welcome, Willow.

Sounds like you are quite well organised, but and it is probably best not to spend too much time Googling - things regarding AC vary so much from place to place, and a huge amount on Google is out of date. Best places are here on the Macmillan site, or Cancer Research UK. They are up to date and have the best information especially if you are being treated in UK.

My tumour was also missed - that's not uncommon here as others may confirm. Many of us are told it's piles etc. I could not get past the GP receptionist who asked me if I'd tried having a hot bath when I had to plead with her for an appointment - this was during Covid. I never did see a GP at my surgery and ended up calling a private one, I was so desperate.

Fortunately we have a tumour which responds really well to treatment, although it can be harsh on our bodies. But we are all different, so try not to predict how you will react and just take things day by day. Where are you now regarding treatment? x

They couldn't get a read from the biopsy in the colonoscopy so am awaiting a deeper biopsy next week under general. They have the MRI and CT scan (no spread as yet) and he said that he would bring me up at his MDT meeting this week with the clinical oncologist he works with. She is based at the Royal Marsden so really hoping I might be treated there. It feels very slow, though I know it isnt...he said "it looks like a duck, quacks like a duck but we need a feather from the duck to deal with the duck"! So, he thinks it is HPV positive which woukd be the very best outcome!

I am so shocked to hear about your GP experiece. So many assumptions! I went to a private GP when I started to feel something was wrong as there is often no other way to be seen!!! Best £100 spent.

Thank you for coming back. It is so wonderful to have your support xxx

Hi Willow

Different biology but I had some similarities, my tumour was also towards the front and pressing on my seminal vesicle and that gave me most of my symptoms apart from the tendency to get constipated. It looked very close on the MRI 4 months before I started treatment but it didn’t break through.

I also had issues with the GP but also had issues with the hospital, I did get a referral after several visits and then an ultra sound scan picked something up, so fast track to the Rapid Diagnostics Centre, who found something else but missed the AC. So then each time I went back to the GP with the AC symptoms, not interested and I suppose having gone through RDS you can see why.

Anyway it was 14 months before I could get another referral and then the same as you the initial biopsies where too shallow and I needed the deeper one, that took another 2 months. I had the spinal block rather than the general though as I wanted to know what was going on after the first hospital missed it all. When I did get referred to the Christie I needed another MRI because of the delay in getting the biopsy but the tumour hadn’t grown in the 3 months between the two.

Regarding burning of the skin, I didn’t have any except for a very minor reddening that came on at about the 26^th session but it was only something I could see I couldn’t feel any burning or itching and it faded within a couple of days after treatment.

You have good advice already but my top tip would be to start with regular moisturiser all around the area and between your cheeks as soon as possible.

Hope you get your treatment arranged soon and then you’ll feel more in control.

Monty xx

 TheMont Thanks so much, I do feel like mine has grown a bit in the last month, not huge though but I am definiteky feeling more discomfort - scared it's more agressive. I will push when I see my Consultant for the biopsy - its the fear it can grow fast and then spread....

Thanks for your reply, I will start moisturising!!!