Vulval cancer

Hi I’ve just joined the forum having been diagnosed  last week. I would love to hear from anyone on a similar journey. Please read my profile for some info.

  • Hi Eileen 

    It's nice to hear from you. Sorry about the news you have had. Your plan sounds pretty identical to what I had. It's good that they have sorted accommodation for you. Do you know the name of the chemo?

  • Yeah that's what I had! It wasn't too bad - I had an anti sickness capsule before each treatment plus a couple of steroid tablets and a water tablet (which kept me running to the loo). I'd say that the worst thing about it was that I could never sleep at night on the day I had it but this was probably because of the steroids rather than the actual chemo drug.

  • Hayley, this is amazing that we have started chatting and our treatment is very similar. It’ll be good to keep in touch when I start. Can I ask what were the steroids for?


  • They were to reduce the side effects of the cisplatin, specifically nausea/vomiting (which I didn't have at any point during treatment). I had 2 before the chemo whilst sitting in the chair then they gave me a 3 day course to take home with me. They were called Dexamethasone. Please do stay in touch and you can ask me anything about it. X

  • Hi Hayley, well scan of liver back with no cancer so great news! I’m starting treatment this week but tomorrow is a bank holiday so later in week date to be confirmed. I do feel my tummy has swollen probably to do with the lymph nodes in my groin.

    I am at peace with it all but feeling as if life has stood still can’t settle myself to do anything! Just want to get started.


  • That's amazing news! I know what you mean.... once you know what the plan is you just want to get on with it and get started. X

  • That's good news you have been through your treatment and doing well. I've just been diagnosed with early stage vulval cancer and awaiting surgery. The hospital don't do sentinel lymph node biopsy so having to have full removal both sides of groin. This poses a huge lymphoedema risk and wondered how you were managing your risk after surgery. 

    Many thanks


  • I was told that the risk of me developing lymphoedema was 50% - thankfully not developed yet although my thighs do look bigger lol but that could just be the weight gain from menopause. I was told that moisturising my skin was very important so I use Aveeno cream/body wash.... pretty much every Aveeno product out there! I was also advised to avoid using razors to shave my legs so I purchased an electric shaver. I'm careful with any cuts I get on my legs and make sure that I clean them straight away. When I'm sitting at home I also try to keep my legs elevated. I'll probably get it at some point knowing my luck lol. Do you know when your surgery is? Is it just surgery or are you also having radiotherapy/chemo? Xx

  • Many thanks, Hayley. Reading about your experiences is very helpful and reassuring. I'm hoping it will be just surgery but all depends on the lymph node biopsy. Good to hear you are coping with everything so positively. I'll try to follow your example.