Best treatment

Hi Frumpy. I’m a Community Champion in the Anal cancer group but noticed your post hadn’t received a reply. Sorry I don’t have the experience with this type of cancer to answer this question. Could you perhaps ask your doctor at your treating hospital( assuming you have been referred) or alternatively contact   the Macmillan Support Line on 0808 808 00 00. They are available to speak to 7 days a week, 8am-8pm. Calls are free. Sorry I couldn’t be of more help. Bev. 

Hi Frumpy,

I think treatment very much depends on your consultant from what I can make out. I was advised to have a WLE for my VIN3, so that’s what I went with. In answer to your question I don’t know which treatment is most effective, I would recommend speaking with your consultant. Alternatively you could call the Macmillan support line as suggested by 1in1500. The advisers are very friendly and knowledgeable and should be able to give you some information on the treatments. 

Whatever you decide I wish you the best of luck! I am always here if you have any questions or would like to chat.

Take care, 

Cancer warrior, how long were you in hospital for? 

Thank you xx

Hi Frumpy,

I was a day case for my first WLE, but I hear that most people stay the night. Mine was right in the middle of lockdown so I wonder if they were trying to keep people out of hospital. When I had my second WLE, at a different hospital, to widen my margins I stayed for 1 night. I expected to go home, but was told it was standard procedure to stay for the night. I think like most things the individual consultant probably plays a part, as well as the individual themselves. 

I hope you work out what’s right for you soon!

Hi. I can’t say which is the best treatment but I have opted for imiquimod to treat extra mammary Paget’s disease which is a type of vulval cancer or pre cancer. I wanted to avoid surgery if I could. Surgery is still an option if the imiquimod is not successful. I got a lot of help from the nurse on the helpline here, the local Maggie’s Centre and the Eve Appeal before making my decision. 

Hello. It's such an uncommon disease I think that it's difficult to ask for help and advice. I've got another appointment with my gynae at beginning of December to discuss if she thinks wle would be better than the cream. Tbh, I feel probably like lots of people, I've been worrying about this since start of pandemic. This is when my problem started and we couldn't get to see doctor. I still haven't seen my gp and am still waiting for nhs gynae appointment. Apparently it won't be until late next year!!  Thank the Lord for my private gynaecologist. I just want this sorted asap or under control so I can sleep at night and stop stressing about it. Feel I've aged about ten years with worry! Sorry for moaning xx

That’s a long time to wait! I completely understand you seeing a private gynaecologist to start treatment. I was lucky and the NHS saw me really quickly so no hold ups. And it’s completely normal to be worried. It feels better when treatment starts whatever it is. I saw a dermatologist and gynaecologist which helped a bit with the decision to try imiquimod. If you do decide to use it, I’m happy to share any practical tips about it later on. Best of luck with your next appointment. Xx 

Thank you so much. It makes me feel better knowing I'm not alone. Going to change GP soon as they're totally unhelpful and not interested in helping me. Apparently they don't think this is  serious enough to try and push me up nhs waiting list! 

If it's ok to ask you, where do you live?