New diagnosis

Hi LR48 ,

Sorry to hear of your diagnosis. 

It makes total sense when you say you don’t know what to say but  it’s nice to know you’re not the only one. I didn’t have radiotherapy, but I did have a diagnosis of VIN and vulval cancer. I am happy to talk any time if you want someone to talk to. 

Take care,

Hi,

Thanks for your reply, it would be good to talk. X

Hello LR48

I was diagnosed with vulval cancer in February last year.  Since then I've had 2 operations and 5 weeks of radiotherapy.  It's all very scarey but not knowing what's going to happen is the worst. Once you have a plan you will feel better.  My advice would be to take someone with you whenever you see a consultant as you won't remember everything that's said. Your gynae cancer specialist nurse will answer any questions , they're amazing and have direct contact with consultants. Join a local cancer support group if you have one, there's also a vulval UK support group on Facebook. As for radiotherapy, moisturise all of your pelvic area before and after, but not just before, I used coconut oil but MooGoo cream is amazing too.

I'm very happy to answer any questions relating to my own experience, I'm still on the journey but recently had CT scan that was 'entirely satisfactory' according to my Oncologist.  You'll get there  stay positive it really helps and take one day at a time.  Sandyx

Hi Sandy,

I'm glad that your latest scan was ok. 

Thanks so much for the advice re moisturizer, did you have any soreness? 

I think the worst thing at the moment is the unknown. My husband comes with me to my appointments, good job really as I have the memory of a goldfish! 

I have my scan on 27th February so will hopefully know more then.

Lisa x

Hi LR48 ,

Happy to talk anytime. You can message me on this thread or send me a private message. 

Good luck with your scan. 

Hi

The advise from Sandy to moisturise is really good.....I used Aveeno. I had 25 sessions of radiotherapy and my skin started to get red and sore about halfway through. I was given some Flamazine cream at the end of the radiotherapy treatment to help soothe my burnt skin. Make sure you tell your radiotherapy team if your skin starts to get uncomfortable or you get any other side effects - don't suffer in silence.

I'm happy to chat if you have any questions or just want to talk. 

Xx

Thank you.I think the waiting is the worst bit and fear of the unknown. As far as I'm aware the treatment is for right lymph node but I have my planning scan on Monday so will know more then.

I know this probably sounds ridiculous but being told I have to use an enema every day is really freaking me out too! 

Xx

My cancer spread into my lymph nodes as well so I had them all removed in a separate operation to my vulvectomy. 

It doesn't sound ridiculous to be worried about having an enema every day.....if you don't mind me asking why do you have to have this?

Xx

Something to do with needing an empty bowel and a full bladder for radiotherapy. Part of me is hoping I misheard the nurse! 

X

I had to have between 400 - 500ml of urine in my bladder everytime I had radiotherapy but I think that is because this is what I had in my bladder when I had my planning scan. My bowel had to be not empty but not have too much in it when I had the planning scan and tattoos so I took some bisacodyl for a couple of days before the scan. During the actual radiotherapy they never said anything about how much was in my bowel. To be honest with you after a few sessions it gave me diarrhoea anyway....unfortunately that's just one of the side effects of pelvic radiotherapy. 

Xx