I'm sorry to hear about your diagnosis. I had 5 weeks of radiotherapy for vulva cancer. If you've got any questions about it or want to know anything feel free to ask.
So I had a "planning" appointment first where they explained what would happen during the radiotherapy and what side-effects there would likely be. Then I had a scan and they put tiny tattoos on my skin which they would use to make sure that I was in the right position when having the radiotherapy.
The radiotherapy itself is completely painless and only takes about 5 minutes once you are "lined up" correctly. The machine itself is very much like a CT scanner - you lie flat and it slowly moves you back and makes a whirring noise but they usually have some music playing. The staff can see you and hear you at all times.
I didn't get any side-effects until about 3 weeks in then I suffered with diarrhoea, tiredness and a sensitive bladder but if you do get any side-effects they will prescribe you medication to help. By the end of the treatment my skin was quite burnt but they gave me some cream which really helped.
At my planning appointment they gave me the times of all my appointments so I could organise someone to come with me. I also got a car park pass so that I didn't have to pay for parking but I don't know if every hospital has this.
If there is anything else that you want to know or if you want me to expand on anything please just ask.
Don't apologise - its a rare cancer so it's important to talk about it.
It was Stage 3 C so it had spread into my lymph nodes which I had removed after my initial surgery.
I didn't really get any major side effects from the chemo - just a dry mouth and I always struggled with sleep on the day I had chemo but that was probably because of the steroid tablets I had to take before the chemo.
My treatment finished at the end of August last year then I went back to work 2 weeks after this. I then had a CT scan and an MRI and I got the results of these about 8 weeks later which showed no evidence of disease.
At the moment I have a CT scan every months. I've also gone into early menopause because of the treatment (I'm only 38) so I've just started HRT.
It really wasn't as bad as I thought it would be but of course everyone's experience will be different. The staff were amazing and were always there to answer any questions or sort medication out for side effects. My consultant rang me every week during treatment to check on me.
Sorry I meant every 6 months for the CT scan....fat fingers when typing lol.
It is difficult to find info on it. There is a really good forum on Macmillans website - they have separate pages for each particular type of cancer and there is a chat page like this one just for people with Vulva cancer. There will likely be one for vaginal cancer as well.
I had my surgery at a different hospital to where I had my treatment. I'm not sure if you are allowed to name particular hospitals on here but my surgery was done in Birmingham. I'm from Stoke-on-Trent which is where I had my treatment.
not yet, i got the diagnoses wednesday and they have referered me to our local cancer hospital, i am in Manchester so at the moment i am waiting for an appointment for a pet-ct scan even though i have had an MRI scan and an appointment with the oncologist
