Radiotherapy to Vulva... worried

I am 30 years old with Vulva cancer. I had a tumour on my labia and unfortunately for me it was within 2cm of my clitoris so they have removed that.

If that wasn't bad enough, I have now been told I will need radiotherapy to my Vulva and to be honest they have me worried sick talking about the potential side effects. I know everyone reacts differently but would love to hear some honest experiences - whether they are good or bad. It sounds like it could be horrific - will I ever be able to have normal sex again?!

I feel like I can't talk to anyone about this as I am trying to stay strong and positive.

  • Hi sorry you haven't had a response to your post.  I don't have an answer for you as I had breast cancer but if you put 'radiotherapy vulva' in the search bar you should be able to find other peoples posts which might give you the information you want.  You can also try replying to those posts in case whoever posted them is still active on this forum.

    Hope treatment turns out not to be too bad.

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi ,

    Sorry for the slow response. 

    I didn’t have radiotherapy, so unfortunately can’t answer your question. I did however have vulval cancer and a wide local excision to remove it when I was 37. So I just wanted to say I am here if you would like to talk! You can also phone the Macmillan support line on 0808 808 00 00 where you can speak to a specialist. They will be able to answer your questions and offer emotional support. 

    I wish you the best of luck with your radiotherapy.

    Take care,

    Vulval cancer warrior xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi helloitsme, I had vulval cancer, slightly different to you as it was more internal. I had a hysterectomy and vaginectomy to remove it. Followed by 7 weeks of radiotherapy. I was also told about all the side effects which was very scary. The main thing was the tiredness, which at times was overwhelming. I had skin changes in my groin, but it didn't blister or get too sore. The radiotherapy team were amazing, and asked every day if I'd had any issues, which if I did have they sorted them out. They gave me cream to use on my skin which helped. It's worth getting some loose cotton trousers. I was seen by a macmillan radiotherapy nurse weekly which really helped because I could be honest with her about how I felt. It hasn't affected my bladder or bowel and my skins recovered. The most important thing is to be kind to yourself, listen to your body if you're tired then rest. It took me a few weeks afterwards to feel normal again, the tiredness was the worst. Its really important to have someone to talk to about how you're feeling, I'd definitely recommend getting in touch with the Macmillan nurses, you can be honest and not have to be strong. It's a really tough time but you will get through it xx

  • Hello I'm in a similar spot to u I had a lump removed and both sides of my groin lymph nodes and I've bin given the option for radiotherapy  36 no partner to speak to and have no kids myself yet. I absolutely want kids in the future and have no idea what to do I'm edgeing more to no treatment and they have removed all cancer cells they were only in the left side first 2. Its very overwhelmeinh to come up with a choice :( 

  • I was told begining of Jan that i have vulva cancer but still waiting for them to make up their minds about what they want to do as I have other stuff going on that they need to take into consideration They have talked about chemo or radiotherapy to possible shrink it but still waiting to see Dr about this. I had a kidney transplant 12yrs ago and they place the new kidney in lower stomach/groin area and the concern is radiotherapy might damage it and i could end up on dyalsis but kidney specialist today told me my kidney function is so good and i shouldn't have any more problems than anyone else so one GOOD news as far as that goes but still don't now all the side effect that this might cause. Feel like my life in limbo

     They are also saying if this shrink it I might still need the op.  I have had a few ops in my time but this is talking the top spot at the moment. I asked about sex and I was just told they would need to speak to a pladtic surgeon about  this.  My partner keeps saying I need it cutting away and thinks that will solve the issue of my VIN but I don't think.he taken in that sex might be off the table

    Trying to stag strong ad positive but just struggling 

    Hope it all works out for all off x

  • Oh wow I was worried what men would think on my below area but I have a really good male friend that I see regular after my first op we got together I was soooo nervous as it was only about 6 weeks post op the sex never hurt sorry to go to personal but I don't think I was as wet as normal I'm not sure weather that was nerves or was from the op. But he was great and said he couldn't tell that I had a lump removed. Yes u do need it removed even your partner agrees u already have that support and itsnt gonna b a shock or have that akward conversation meeting some1 new that's what I'm dreading more then anything it's such a not so much embrassment but it's not something to talk about on a 3rd date. 

    • I understand you are worried about treatment effecting your possibility of having kids have you asked about egg fezzing not sure you can but maybe its a possibilty. I don't have kids because I can't so I do appreciate your thoughts on not having treatment so.u can have kids but u have to also look after you as well. I know its easier said than done but there are lots of ways to have kids these days not easy ways I know but other option are out there.  Talk to them about your concern with treatment and what may be your options of having children later.  Hope it all works out for you take care xx