Primary vaginal malignant melanoma

Hi and a very warm welcome to the online community

I'm sorry to read that you've recently been diagnosed with vaginal melanoma, also known as mucosal melanoma, and it's perfectly normal to feel as you do.

I didn't have the same type of melanoma as you but mine was a rare type of skin melanoma called amelanotic melanoma. Like you've probably done, I 'googled' it and scared myself silly as the prognosis for it was supposed to be poor due to the fact that they're usually missed. However, here I am nearly 5 years later and still going strong!

I've had a look through the group and found that the most recent person to mention mucosal melanoma was nine months ago. I've 'tagged' her into my reply to you so hopefully she'll pop on and reply to you.

You've said that your treatment plan has been delayed and I do understand how stressful that must be. What treatment will you be having and do you have a date yet?

x

Hi Stalybridge1960, so sorry about your diagnosis. I have mucosal melanoma but mine started in my cervix, caught in November 2018 initially misdiagnosed. It is so easy to start googling even if sirens in our head is screaming "don't do it!" I would suggest chasing your specialist nurse and saying you're worried about the delay. I did find acknowledging feelings of fear and upset did help and also talking to a Lovely lady on Macmillan helpline calmed my head and heart a little

Unfortunately I currently have very little treatment paths (you can read my profile), but had been told immunotherapy has a chance of working as treatment for some people in these cancer types assuming that's what you'll have.

Hope your treatment starts soon and all the best to you.