Hi, I am Joanne and was first diagnosed with vulval cancer in 2007 aged 40yrs. I have had reoccurence 6 times since and had chemo, radio and immunitherapy. My latest reoccurence was August and it may now be in my colon and it unfortunately cannot be cut away from my vulva. I now have a decision to make as I maybe able to have a pelvic exenteration if not it will be comfort care with pallative. I never thought it would come to this.Has anyone else had a similar journey?
Hi Jojo67 and welcome to the group.
I’m so sorry to read of your situation-dealing with any recurrence is really tough and you’ve been through a great deal already.
My cancer was different-it was cervical-but I have had a total pelvic exenteration when my cancer recurred after my first line of treatment which was radiotherapy and chemotherapy.
I had the same options of the surgery or palliative treatment and I know it’s a huge decision to make if you have a choice. My cancer had not spread to my bowel, but it was very damaged by radiation, so I decided to have it removed to give me a better chance. It had spread over my bladder, so that had to go too, along with the whole of my reproductive system.
It’s a massive surgery, but I would still make the same decision again, because it offered me the chance of a cure. I have 2 stomas, which are straightforward to manage, and I had my surgery in March 2020. Recovery took a long time but I’m very glad I went through it.
I’m happy to answer any questions about the surgery and recovery if you need to hear from someone who has been through it. It’s not a common surgery, so there are a limited number of people I’ve been able to connect with who had the same experience.
When will you find out if the exenteration surgery is an option for you?
Sarah xx
