Hi, I'm Amazing Grace,
I'm excited about joining the group and the discussions.
I was first diagnosed with Vulvar Cancer in December, 2022, and subsequently had four chemotherapy treatments and 36 radiation treatments. I was then cleared.
In December, 2023, a tumor started growing in the same spot as the vulvar cancer. A biopsy revealed the cancer has come back, is deeper and fast-growing. A PET scan revealed that the cancer has not metasticised as this point..
I am meeting with a gyn/oncologist at the MD Anderson Cancer Center in Houston, Texas (USA) next week. Some doctors I have already talked with suggest a pelvic exenteration. In my case, they would have to remove the vagina, bladder, rectum, and half of my butt cheek. This scares me beyond anything!
Has anyone had this radical surgery? If so, please tell me about it.
Thanks for responding!
Amazing Grace
Hi Amazinggrace
I have had a total pelvic exenteration-this was done almost 4 years ago to deal with my recurrent cervical cancer and if you click on my name you can read my story and see what I had removed in my surgery.
I’m not sure what you’d like to know, but happy to help answer any questions if I can. I chose not to have reconstructive surgery, so didn’t lose any of my butt cheek! There are not a great deal of posts about this surgery in the community but I have posted quite often about it in different groups.
I’ve never once regretted having surgery, though it’s massive and recovery is long. Please feel free to ask me any questions and I’ll try and help from my own experience of going through it and successfully coming through to the other side.
Sarah xx
Hi Scottybear and welcome to the group.
I’m sorry to read you need this surgery, but the surgery I had and which Amazinggrace might be facing was much more extensive, so not the same as you will be having. However, it’s very scary to be having any sort of surgery, particularly in this area.
It might be a good idea to start your own post to introduce yourself and tell the group about your situation as sometimes posts might get missed in other threads. If you put up your own post-just click the “new” button at the top of the page to do this- you will hopefully be able to connect with other ladies who’ve had either a partial or total vulvectomy who can share their experiences.
I hope you have some good family and friends support around you and will have some help at home when you are discharged after your surgery and hope everything goes well for you.
Sarah xx
