Hi B

I had stage 3 vulva cancer. I didn't have any lumps or bumps. The skin on my vulva was severely ulcerated and it itched like crazy. It's a very rare type of cancer so try not to worry too much (I know that's easy to say) and keep pushing your GP for advice if you are still worried or unhappy with how they have treated you. If you have any questions feel free to ask me anything.

XxX

Thank you so much haylzz for your reply. How are you things going for you? I think I'm going to keep pushing for another GP appointment and stress to them how anxious it's making me. Xx

I'm around 18 months on from the end of my treatment so I'm doing okay thanks. Are your smear tests up to date? Mine was spotted during a smear test .... it was caused by HPV.

Xx

Ah that's so good to hear, I can't imagine what it's been like for you. Yes when I went to the doctor about this I was due my smear test so she did it there and then, still waiting on results. I've always been up to date with them before that also. Xx

Hi. I have just been told I have vulva cancer. The treatment sounds horrific. Shall I still have an enjoyable relationship with my man?? Do I have to have surgery?

Hi haylzz, I’m just starting my journey with vulval cancer. Can I ask what your treatment involved during your 18 months?

Hi Eileen 

Of course. I had a total vulvectomy and a sentinel lymph node biopsy in February 2022. Then in April I had the rest of my groin lymph nodes removed because they found evidence of spread in my sentinel node. Then in July of the same year I started radiotherapy and chemotherapy. I had 25 sessions of pelvic radiotherapy (Monday to Friday) and 5 chemotherapy (once a week). I had a reconstruction at the same time as the original surgery. I had Stage 3C vulva cancer.

Have you been told much about what to expect?

X

Hi Haylzz, my goodness you have been through the wars but so pleased you are out the other side. I’m not getting surgery as tumour too large and not in a good position so it would be too extensive. I don’t have my 1st meeting with consultant until wed 8/5 with a pet scan this Wednesday. Nodes are swollen in groin area so not sure if infected or not but all will be discussed on  8th. Your story has reassured me so thank you. They have said radiotherapy similar to you how did you find that for 5 weeks?

Hi

It wasn't too bad to start with. By around the fourth week I started getting bladder and bowel side effects.... irritated bladder and diarrhoea. My skin was quite burnt towards the end but luckily (I suppose) I'm quite numb in that area since surgery so I couldn't feel it too much. The team really look after you as well. They provide medication if you need it for any side effects.

It can be quite annoying going to the hospital everyday. My local hospital provide a parking permit when you are having treatment so you don't have to keep paying for parking - make sure you ask about it otherwise it can cost a fortune!

X