Hi, I was diagnosed with VIAN 15ish years ago had laser treatment and was told all would be ok. I am now nearly 70 and was diagnosed with vaginal cancer a year ago. Ive had Chemoradiotherapy treatment which ended up being horrendous but was hopeful it would be eradicated, sadly not. I now have a choice of losing my bowel, Vag and bladder or Chemo to slow down the Sh1ts growth. My feeling is that if they are willing to do the surgery I’ll take it thankfully, but am terrified. Is anyone out there who is going or gone through the same/similar scenario and can reassure me. I desperately want to see my 8 year old grandson grow older. Thanks for listening x
Hi Roastbeef and welcome to our group.
I’m sorry to see that your chemoradiotherapy wasn’t completely successful in getting rid of your cancer-I was in a similar situation where my cancer was back 9 months after treatment ended.
I was faced with the same kind of surgery which has been suggested for you, and I’d like to reassure you if I can, that they would not contemplate this without believing there is a good chance of success. Apart from anything else, it’s an extremely expensive surgery to perform!
If you’d like to click on my name, you can read my story- I had a total pelvic exenteration more than 4 years ago, and it was very successful. I cannot sugar coat it and say that this surgery is not difficult with a long recovery time, but it gives you the best chance. As you say, chemo is about slowing growth but surgery gives the best opportunity for the cancer to be completely removed.
It is terrifying, there’s no doubt about that, but I personally was desperate to have the surgery and tried to focus on the end result rather than the process to get there. I actually slept the night before surgery and was calm while waiting to go to theatre.
I have my first grandchild due in 2 months, and I’ve always longed for the day to come where I would see this happen.
I hope I can help support you through this, and am happy to answers any questions you have if I can. I’m 62 now, and have had no issues connected with my surgery since it was done in 2020. It’s tough, but can be very successful.
Sarah xx
Hi Steph and good to see you post with an update.
What a pity you can’t go on your planned cruise but hopefully you can look forward to holidays in the future once you have recovered from surgery. I’ve had about 10 holidays, maybe more, cancelled due to covid and my cancer so can empathise with your disappointment. However I have managed lots of holidays more recently and it was always a goal I focused on.
You will definitely need the help and support of your family after surgery when you get home, so it’s good they will be up for the challenge! The fatigue I had when I got home, and the weakness I felt, was literally on another scale, and it does take a lot of time to get through that.
Your body has a huge amount of healing to do inside, so you will need to take it easy and not expect too much too soon. Sometimes a good day can be followed by a difficult day so I found my recovery very much up and down and not simple and straightforward. It takes time for your stomas to settle and heal so things can be time consuming in those early days.
I’d recommend on a practical level, getting a waterproof mattress cover, as leaks in the early days can be an issue-you might not have leaking bags, but best to be prepared.
It’s not long now till your surgery, and if you have any questions in the meantime please ask away. It can be very difficult to find and connect with others who have had this surgery so support can be limited because of that. Happy to help if I can.
Sarah xx
