Hi,
I just wanted to say hello. In October 2024 I was diagnosed with malignant melanoma of the vagina. A rare cancer.
I am aware of the Rare Cancer Act 2026. I was told that my cancer was extremely rare and basically there was no research and no guarantee that the immunotherapy I would receive would work. I would like to offer my experience to start the collation of research to hopefully inform and help other women with the same or similar diagnosis.
The type of melanoma is mucosal and can effect any internal skin such as the mouth vagina eyes and is therefore difficult to detect. When I first discovered a lump in my vagina I was told to go away. It’s a rare and aggressive cancer and if I had gone away I would have been dead quite quickly.
I went back and had a second opinion and after 3 operations and 12 months of immunotherapy I am currently cancer free. Although I have been told of the rarity I have never been asked to contribute to trying to gather some research.
I wonder if anyone else has had a similar experience or can help me make contact with someone wanting to collate the information.
Thank you
Hi Hel1966 and welcome to the vaginal cancer group.
I’m sorry to read of your diagnosis-I’m aware it is rare type of cancer in this area and that in itself can make it harder to connect with others in the same situation, but it’s good to read that you currently have no evidence of disease.
My cancer was different, but I am in this group because I had my vagina removed as part of a larger surgery.
The purpose of the community here is to share experience and offer peer to peer support, so your post may or may not get replies from others who have been through mucosal melanoma due to its rarity.
However. It may not achieve what you are looking for in respect of gathering and collating information, or providing contacts for a researcher to collate any of that information, as that is not the purpose of our community.
Macmillan is a charity, rather than a research organisation, but I wish you luck in find someone you can share experiences with in the group.
Sarah xx
