Hi

Hi

I have stage 3c vulva cancer as well. I had a total vulvectomy in February and my lymph nodes removed in April. I start radiotherapy and chemotherapy on 20th July.

Do you mind if I ask how the radiotherapy made you feel? Have you had many side effects from it?

Thanks xxx

Hi Clarabell,

My journey has been a bit different to yours. My cancer was stage 1b so I didn’t have any radiotherapy. Always happy to chat though . We share the same cancer diagnosis, only mine was treated with a wide local excision only. 

Take care,

Hi , 

Aaaw nice to speak to someone who is going through the same! Xx

Radiotherapy has been fine just the last week starting to feel tired, lost my appetite and the area is feeling tender although luckily my skin hasn’t broken or cracked which is good! I’m using Aveeno moisturiser to keep my skin soft and moisturised. 

It’s become part of my routine going to hospital everyday for 5 weeks (although I get weekends off!) will be looking forward to ringing the bell next week and hopefully getting the all clear! 

I really hope your treatment is ok and you’ll be all clear soon too!  Xx

Can I just ask have you had any problems with your lymph nodes being removed? 
Take care 

Hi, 

It wasn’t the nicest of operations was it! Can still remember the pain! 
Hope your doing ok now x

Hello Clarabell

I had operation 5 weeks ago to remove 18 lymph nodes after 2 removed at vulvectomy showed cancer cells..  I was fitted with 2 drainage bottles which drained an awful lot of fluid.  I had one removed today which seems okay but early days.  The other will be removed when it's draining 30mls or less for 2consecutive days.  I saw my consultant last week who told me ALL 18 lymph nodes removed were cancer free which was a huge relief.  I have to have radiotherapy in the area of the 2 lymph nodes originally removed as a precautionary measure, I'm hoping that drainage area where the bottles was will settle okay, but quite a relief to have one removed after 5 weeks.

It seems that hospitals vary a lot in their ways of treating this cancer,cos all we can do is hope that whatever they choose to do works for us!

Hi

I use Aveeno products at the moment so that's good although the consultant recommended I use Simple soap but I can't find it anywhere at the moment.

I had a drain either side of my groin after my lymph nodes were removed. These were basically a plastic bottle at the end of some long plastic tubing. I had them removed after 6 days. I was lucky because one of them de-vacced on the day of removal so it wasn't removing any fluid....the pain was mega! I started noticing some swelling in my groin after a couple of days and it just got gradually bigger and bigger. The right side of my groin got as large as a lawn bowling ball and I honestly thought it was going to burst at one point. The pain was awful....I couldn't sit on the toilet properly as the swelling pushed into the top of my thigh when I tried to sit down. The left side swelled as well but didn't get quite as big. Everytime I telephoned someone about it I was told that swelling was to be expected and that it would eventually go down. 

Thankfully when I saw my consultant in Birmingham a few weeks after my operation he drained the swellings. I think he called them lymphocysts. They came back but didn't get as big and I've only got slight swelling in my right groin now.

Are you having chemotherapy as well or radiotherapy by its self?

Thanks in advance and take care.

XxX

Hi Clarabell,

Sorry I didn’t realise you had replied until now.

The pain was one that I’ll never forget! 

I am doing great now thank you. I hope your  treatment is going as well as it can and that you don’t feel too grotty.