Hi,
I have just recently joined and wondered if there are many more people like me out there, I have found one person on here that has a stage ahead of what I have.
It seems that either people dont talk about it or there aren't that many people out there, anyone who has had or knows anyone that has been treated for VIN3 or Vulval, vaginal cancers please let me know. I would love to have abit more info on my side.
What a great place this is, was feeling very desperate and lonely til I found this thanks for being there everyone!
xo
FormerMember
Dear Sophia,
I can't help with what you have as I don't have it. I have leukaemia. I'm just saying hello and I hope you find a fellow sufferer soon who can put your mind at rest. I'm sending moral support to be going on with.
Hi - sorry I don't have the same type of cancer as yourself, so cannot help in that way. I would like to say welcome to the site which is filled with wonderful, warm and caring individuals who will help if they can. Hope you make contact with someone soon, but if not, you've always got us lot, ok? with love kate xxxxxxxxxxxxx
I dont have what yo uhave i have a brain tumour and am having chemo, but i am also very new to this site. B$ finding it iwasnt desperate or lonely as i have a Funtastic supportive Family and Friends however i did just want some one out side the circle to chat with and go Blah to instead of dumping all my questions and woes on them.
Welcome and i hope you are finding this site as wonderful as i think it is.
I was diagnosed with vaginal cancer November 2004, and I know how lonely it can be to have a rare cancer - apparently vaginal cancer accounts for less than 2% of all gynaecological cancers, and adenocarcenoma is the rarest vaginal cancer - trust me to get that!! Since then I've never "met" anyone online who has the same cancer, and it's lonely not being able to compare notes!
In case you haven't found them already, there are 2 Internet forums which specialise in women with gynaecological cancers. Admittedly the subscribers are mainly in the USA, but they do have some British subscribers and are very supportive groups with a lot of experience. There are several vulva cancer survivors on both lists - to me it seems more common than vaginal cancer. One is called "Eyes on the Prize" and the other is called "Gyn-gals". I find them easier to cope with than this site, which seems so broad and complicated to a newby like me!
I had radiotherapy and chemo combined for the initial vaginal cancer, including the bracheotherapy (that's probably not spelt right!). You can read about that in the "Stories" bit of Eyes on the Prize. Then less than a month after my all-clear I found a lump in my groin and had 26 pelvic lymph nodes removed, plus my ovaries, which apparently had been rendered useless by the radiotherapy; 3 of the nodes tested positive for cancer. Then at the end of that year, 2005, I had another abnormal MRI scan and they decided to remove my vagina, all but the last inch or so. That was in January 2006, and I was clear from then until September this year, when they found cancer again in the mouth of the vagina - well, it was me that found the lump, but their biopsy that found it was cancer!
They were intending to give me a urostomy and vulvectomy to ensure clear margins, but then the PET scan showed secondaries in the lung and liver areas, so surgery is no longer an option for me and I have an appointment tomorrow to discuss chemotherapy.
I have been very well between treatments and surgeries. I'd be happy to correspond with you either publicly or privately about my treatment experiences or emotional aspects etc., or just as a soul sister who has experienced a similar thing.
