Hi
Not sure what to say just introducing myself.
I thought I'd join in as I haven't told anyone yet.
I would seem (tbc unknown if primary) that I have a (quote) rare and possibly primary vaginal cancer in "an odd place" is it's very low near hyman ring but deep inside. Originally thought to be something to do with a Bartholin gland albeit it was never a cyst or painful.Grew over the last year at same time as post menopause bleeding
Had PET CT have only had some tel results briefly from oncology nurse as the appointment for a surgeon at a multi disciplinary centre turned up before she and local (lovely) Head of Gyne could call me with results from MD team meeting.
Head of gyne was very surprised it was malignant (lump c2cm+) and if it's primary might be "1 in a million" as i've never had cancer/I don't smoke/I'm not overweight/not sexually active early (or recently) - all the pre indications possible causes are a negative.
Needs staging etc - probably 1b and 2 grade on histology.
I'm seeing the surgeon at the centre of excellence on Monday coming. Initial MDT suggestion is wide local excision. This would be bad and life changing for anyone. I have a horse who is my entire world (divorced, no partner or children, family abroad) who is getting older so not long left to ride nor will I sell - lifelong large pet!
Anyone who's had surgery at the vaginal/vulval level or radiotherapy for the same I'd be hugely grateful for input as I'm thinking or refusing surgery. Quality of life over quantity (I'm middle aged).
Won't make any rash decisions it's just difficult to find real life scenarios given how rare vaginal cancer is.
Thank you for listening and hello
P.S. I had a rare - and previously unknown - heart event under anaesthesia for the biopsies too so....
It’s difficult to find other women who have gone through cancer in this particular area so I’m always happy to be around to chat. Even if the actual cancer is different, I’ve found it helpful to be amongst others who can understand.
In my life, I’m very private and don’t reveal things to others, but it’s different in a community like this where we are all going through tough times and can be ourselves in a safe environment.
It’s especially hard when you don’t have the full story yet about the cancer itself and potential treatment but hopefully not too long to wait to find out more.
Sarah xx
Hey,
This is also my first post. Eek!
After several months of tests and minor surgeries, it was apparent I needed a more in-depth exploration, long story short they found several tumours which they were able to remove, except that was not in an area nor a size to be able to be removed.
This surgery was on the 01/10/24, I am now on day 6 of radiotherapy and day 2 of chemo.
I wanted in particular to reply to you because, the treatment is not easy, and like you I have literally my Mojo, my beautiful big hano x shire who came into my life when he was 9 months old and he just turned 25 this August. In all that time he has listened to my winged, groaned grumbles and sometimes all our temper tantrums, and the only being in my life who has never judged. Without him I wouldn't get through these next few months and whatever is beyond that.
Do what you need to do to remain healthy, nothing is ever too difficult to get through, when you hold the heart of a horse 
