A great start for 2026

Hi, and a warm welcome. I have not heard of your cancer, but do have the experience of chemoradiation to treat my anal cancer, so can perhaps give you some support with that aspect of your treatment. 

I found the radiotherapists were my day-to-day support during the treatment as my chemo was one infusion of mitomycin at the start, then tablets for the remainder, with radiotherapy running alongside for about six weeks. It was quite harsh on the body, but is known to be very effective.

I'm not sure your treatment will follow the same pattern, but the radiotherapists will give you what you need to treat the skin of your undercarriage, and then anything else for other side effects that may arise. Whilst you are waiting, you might find it helpful to use plain moisturiser like E45 or Aveeno on the area from your labia right round to your bottom.

Others will no doubt chip in with helpful advice and suggestions, they are a really helpful group. I am sure you will start to feel a bit better once things get going. x

Hello Rainieday 

I am so sorry to hear of your diagnosis, coming on the heels of five-years clear of endometrial cancer, I am not surprised you are feeling overwhelmed and apprehensive.

I had to look up this cancer as I had never heard of it and it is interesting that they will deal with this in the same way as anal cancer.  The chemo/radiotherapy course of treatment is tough, but doable and has a very high success rate.  And it is short, over 28 days, although recovery can take some time for some people (but not all) .  The key thing to remember is that although there are side effects they certainly don't all come at once and generally only start some time into the third week and you will be reviewed weekly to see how you are.  Most of the forum members found the department treating them extremely helpful in keeping them supplied with pain relief  and various creams.  It is important to keep them updated of how you feel, a prescription can be issued the same day if needed.

Some forum members compare the effects of radiotherapy to bad sunburn, whilst others (I was one) had quite bad sores.  But I have nothing but the highest praise for the hospital that treated me, they were checking on me long after treatment ended and kept me dosed up on painkillers.  And the good thing is that a couple of weeks after treatment ends, the turnaround and improvement can be quite rapid.  Most of us have a new normal after treatment, but nothing that can't be lived with and with luck, you will be cancer-free.

My main purchase, available on Amazon, was a Sitzbath, a portable bidet that sits on the loo and filled with lukewarm water is wonderful for soothing the nether regions later in treatment.  I even used it for urinating and bowel movements, it is very easily emptied and disinfected and it was much less painful going underwater.

Although I am sorry that you had to find yourself here at all, you have come to the right place as most of us have been through or are going through the treatment you are facing.  And there are many of us in the same age group who are through the other side, so please take heart.

The very best of luck with your scans, please come back and let us know how you get on when treatment starts.  And we are all here to support in any way we can.

Big hug

Irene xx

Hi Rainieday welcome to the forum although im sorry you have found yourself here. Personally i havent heard of your type of cancer but ive been through the chemoradiation and come out the otherside. I wont repeat what Mrs Vanilla and Irene75359 have said. Just saying hi and while treatment isnt a walk in the park its doable, you can do it. Sending hugs. Xx

Hello Rainieday,

 I just wanted to say how sorry I am that after reaching the five year mark you have been dealt this blow. I am not at all surprised that you are feeling overwhelmed and apprehensive after all that you’ve been through.

You are clearly a tough cookie and got through the last episode against all the medical opinions and hopefully we can all support you on this next journey.

I had the standard chemo radiation just over a year ago. It was quite tough as the treatment progressed but was manageable. I can see that you’ve already had some great tips so won’t repeat.  I do think that teams vary depending on where you’re having treatment, but think the key thing is to let them know straight away about any side effects you are experiencing as there are many things that can help and they are very responsive. I looked up your rare cancer and it looks like the treatment is the same. 

This forum is a great place to ask any questions, get advice or even just vent. We have all been through or are going through treatment so can hopefully help and support.

Obviously wish you weren’t going through this but wishing you all the best for the scans and preparation. 

xx

Thanks for your response and your advice. I will certainly get going with some moisturiser. x

Thankyou Irene. I have ordered a Sitz bath from Amazon which has a little hand pump to spray yourself with. No idea if that will be any use, but might be if one can get oneself into the right position.

Wondering what folk do with wiping and drying as it seems things get pretty sore and wince-making down the line? Also, how do people get on with wearing undies? It's going to be a bit cold and I'm usually bundled up in layers. I've begun to think of these basic practical challenges that might crop up.

Rainie x

Thanks for the support Bungle. x

Thankyou PEB 24. My hospital is over an hour away but since my previous cancer Macmillan have opened a clinic that is local and I'm hoping they might be able to do the treatments instead of, what is for me and my husband, a rather exhausting trip. Don't know if that will be possible, but I think we will struggle doing that 5 days a week. Lots to find out and my list of questions is getting rather long.

Thanks to everyone for your kind words. It's really appreciated.

Rainie x

 Rainieday 

Big soft seamless pants (or boxer shorts) are the way to go.  And I bought loose tracksuit bottoms for the radiotherapy sessions.  When side effects really began to kick in I lay in bed on a disposable incontinence sheet (just sticks to the sheet) with nothing on below the waist.  And non-perfumed baby wipes after the loo, Aldi do one which has coconut oil in which was very soothing.  They don't flush, so I kept a nappy bag to dispose of them.

We are fortunate to have two loos upstairs and my husband kept the nearest one with the Sitzbath already filled with water ready for me when I needed it.

All these things springing to mind, I will come back if I think of anything else!

Irene xx

Hi Rainieday ,

Firstly another warm welcome from me although I’m really sorry to hear of your recent diagnosis especially after reaching the 5 year mark following your endometrial cancer diagnosis, life just doesn’t feel fair at times does it?

Both Irene & Mrs Vanilla have both given accounts of the treatment for this particular diagnosis so I’ll not repeat but try & keep in the forefront of your mind that this will hopefully offer you your cure & a healthy future. Also remember we’re all individuals as are our reactions to the treatment, the side effects build gradually with the skin reaction being the prevalent one but your treating team will have a whole array of lotions & potions to help.

Remember we’re here to support you however we can.

Nicola