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.
I was diagnosed with Stage 3 vulva cancer a couple of years ago. I've had surgery, radiotherapy and chemotherapy. If you've got any questions or just want to chat about it feel free to message me. X
Hi! Thank you for allowing me to chat. Found out today that surgery isn’t an option as tumour too large and surgery would be extensive so having radiotherapy. Did you have yours after or before surgery and how many sessions? Did you have any side effects?
I had 25 sessions of radiotherapy and 5 chemotherapy all after the total vulvectomy that I had. The side effects weren't too bad from the radiotherapy - mainly diarrhoea and my skin was quite burnt towards the end of the treatment but the team really look after you and give you medication to help.
Hi Hayley, it was fine. Nothing apart from chats with gynae oncology nurse - no surgery even if tumour shrinks. She mentioned radio and possibly brachytherapy. Concerned about swollen nodes and from reading it is common for the cancer to spread there.
Yes that's what mine did so I had them all removed to be safe. Hopefully the consultant on Wednesday will be able to give you a plan going forward. Let me know how you go on. X
So when I had the vulvectomy surgery I had a Sentinel Lymph node biopsy done at the same time. My original consultant recommended it and referred me to Birmingham hospital (I'm from Stoke) as he said it was unlikely it had spread and it would be kinder than having them all out. Turned out that it was in my lymph nodes so I ended up having a second surgery about a month after the vulvectomy to remove them all from both sides of my groin. I had the radiotherapy and chemotherapy 3 months after this.
So when I had the vulvectomy surgery I had a Sentinel Lymph node biopsy done at the same time. My original consultant recommended it and referred me to Birmingham hospital (I'm from Stoke) as he said it was unlikely it had spread and it would be kinder than having them all out. Turned out that it was in my lymph nodes so I ended up having a second surgery about a month after the vulvectomy to remove them all from both sides of my groin. I had the radiotherapy and chemotherapy 3 months after this.
Hi Hayley, well 99% of results in news could have been better! The vulval cancer has invaded the muscle in my hip and back passage plus the lymph nodes on both sides of my groin. Also, there is a 1.5cm ‘something’ showing in my liver - pet scan didn’t highlight it as cancer so had another mri scam there on Thursday. Plan of action is 6 weeks of radio Monday to Friday with chemo one a week over the six weeks! I have been offered accommodation near hospital as the treatment will be intensive and I probably won’t be about to cope with travelling. I’ve provisionally got a date for end of May but they want results of scan first. A tough journey ahead! If anyone has been through similar I would appreciate any advice.
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
I was diagnosed yesterday with Vulval Basal Cell Carcinoma - the consultant is referring to surgery as a day case. My symptoms are pain, itching and burning. Do you know once you’ve had surgery do the symptoms disappear?
