Newly diagnosed

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Hello, I'm new on here.  I've recently had surgery for vin and biopsies taken from a lump I found. I had my follow up appointment and have been diagnosed with vaginal cancer which after a full body scan will be treated with radiotherapy and possibly chemotherapy, I am really scared and was wondering if anyone can give me some kind of idea of what to expect during the treatment and after please.

  • Hi I completed Chemoradiotherapy and brachytherapy in December 2021 take each day as it comes and listen to your body as as the treatment progresses you could become very tired always inform the staff of any side effects as they can you give medication to ease it. I hope all goes well 

  • Thank you for your reply, it's very helpful to know the things to expect from people who have been through it.  I hope that you have recovered and are all well now.

  • Hi I am doing well  had a few scans following treatment and a lot of discomfort and pain but this has eased I’ve found gentle swimming to be helpful ti regain my fitness. Look after yourself and keep me updated ask any questions when you need to.

  • Hi, I was terrified after my diagnosis in May 21. Since then I’ve had 2 operations, chemo, radio and brachytherapy. It was incredibly difficult, painful, lonely and scary at times but I’m now back at work, exercising gently, starting to socialise normally (it’s quite nice to have an excuse to turn things down!) and i’ve even resumed intimacy with my husband that I thought would be impossible. Life is different but good. I’ve been so well looked after by the amazing NHS and feel hopeful for the future. I wish you every best wish for a positive recovery. 

  • Thank you for your reply, like you I am terrified, it's difficult to get my head around it and find it awkward to talk to anyone as it's embarrassing being vaginal cancer which apparently is a rare cancer. I suppose it the not knowing how my body will react to the treatment and if I will be able to have any kind of normal life including intimacy with my partner. It seems you have had a rough time but are beginning to restart your life and hope things keep improving l.

  • Hi! I really want to swim. My treatment hasn't started yet but my tumour bleeds and so I have stopped swimming. Did you swim before treatment? How long after treatment did you resume swimming? Thanks

  • Hi I only had bleeding once which started the ball rolling and was the reason I went to my GP. I only started swimming this year we’ve joined a small Health Club so it’s a small pool, before I started my treatment I was quite fit which I believe helped me through the treatment, I do find my hips are quite stiff following treatment hence the gentle swimming is definitely helping. I’ve also gone back to Pilates but find some of the exercises uncomfortable but it is keeping me relaxed and supple I believe any gentle exercise is good for me as it’s still difficult mentally. Take care and I hope your treatment goes well listen to your body and don’t hesitate to ask questions everyone responds to treatment differently.

  • Hi DebsJ, really sorry you've had to join us...If I could impart any advice/ words of wisdom, it would be, stay positive...if you have chemrad, shower after your radiotherapy and slather on an oatmeal based cream...ask your specialist nurse to prescribe zeroveen, you can wash with this too.  Shower the next day before your treatment so there's no trace of cream..I was woefully uneducated about it all..I only found this forum after I'd finished all my treatment and on the way to recovery...

  • Hi Shelley,

    Thanks for your advice, Did you have a PICC line? Was it ok? Did you feel the chemo going into your vein? I'm receiving cisplatin and I start on 13th June. Congrats that you are on the way to recovery x

  • Hiya, I am currently having radiotherapy and chemotherapy.. cisplatin, I have an IV cannula put in for my chemotherapy and once that is complete I will be going to have brachytherapy.The chemo does take all day as they need to give lots of IV fluids. I am only on my 1st week so time will tell to how it goes. I wish you all the best and hope your treatment goes well. Feel free to chat if you need any support