Hi everyone
For 6 weeks I've been diagnosed with rare vaginal sarcoma. the tumor is growing & is inoperable.
I was told that it hadn't spread however on Friday the dr told me they made a mistake & it has spread & is uncurable .
I'm beside myself with anxiety & worried about the future.
Im post menopausal .
I was bleeding for 8 months before they detected, as they took biopsy from wrong place. Constant lies and mix up with hospital doesn't help the awful diagnosis.
I'm going to an oncology hospital next week to see if I can get palliative chemo.
Does anybody else here have vaginal sarcoma ..mine is High Grade 3 aggressive.?
Any good advice would be appreciated.
Look forward to hearing from anyone
Thanks
Hi Posie Tivity
Welcome to the Soft tissue sarcoma group.
I am sorry to hear of your diagnosis of vaginal sarcoma.
My own cancer was an endometrial carcinoma sarcoma so was also a high grade and aggressive one- so I remember how scary it was to get the diagnosis. I hope it is ok to respond as I thought that as vaginal cancer is a rarer cancer it may take a bit longer to get a reply.
The issues at your hospital must have made things difficult for you. Your focus will naturally be on next weeks appointment at the moment but I will pop a link below for PALS in case you did need some support.
What is PALS (Patient Advice and Liaison Service)? - NHS
I will pop another couple of links that may be of help. I found that it was helpful to have a bit of background knowledge before seeing my oncologist and to think about what I wanted to ask.
Vaginal cancer | Macmillan Cancer Support
Soft tissue sarcoma | Macmillan Cancer Support
Having such a diagnosis is very difficult and I can recommend giving the Support Line a call, if you feel like talking to someone would help. The number is below.
I hope that your appointment goes as well as it can next week and brings a plan for the way ahead. In the meantime, we are here if you need us.
Jane
Hi Posie Tivity
PASS is the equivalent to PALS in Scotland whichyou could contact.
I have not had the same cancer as you, but like Jane has suggested it might be useful for you to join the vaginal group. I’m in that group because my cancer was operable and I was able to have my vagina removed, but there may be others there who have experiences of treatment in this area who might be able to share their experience and give you some support.
It may also be helpful for you to request to join this group which is for patients only-
Living with incurable cancer forum
Sarah xx
PASS is the correct one for Scotland.
If you click on my name my treatment etc will come up. Sarah has also popped some useful info below for you
