Malignant melanoma of the vagina

Hi Cat1968 and welcome to the vaginal cancer group.

I’m really sorry to read the diagnosis you’ve been given today-it must have come as such a shock to you to find out that your cancer is inoperable. 

I didn’t have vaginal melanoma myself, but I am a member of this group due to having my vagina removed as part of a large surgery for my cervical cancer where my tumour had spread into the vaginal wall.

I did search in the group for others posting about vaginal melanoma, but unfortunately didn’t come across anyone with recent experience I could point you to. My only personal experience is through having a couple of friends both here and overseas who have dealt with the same type of disease and are members of an online support group I run for our type of surgery. 

This particular type of cancer is rare, and it can sometimes be difficult to connect with others in the same situation. However, it may be that someone will read your post and come along to share their experience when they see it. I wanted to let you know that your post had been read and acknowledged-I know how scary it is to get a cancer diagnosis. 

After the MDT meeting you will have an appointment to discuss your plan going forward, and hopefully you won’t have too long to wait for this. 

There is a charity called Melanoma Focus (melanoma focus.org) which has some information here

Mucosal Melanoma

They have a helpline you can call and specialist nurses to talk to, and these are the details from their website-

0808 801 0777

Our specialist nurses are available to take your calls between

1-2pm and 7-9pm Mon – Fri and 7-9pm on Sun

You can leave a message out of these hours and we will get back to you

I hope you might receive further replies here in the group, and we also have Macmillan nurses available to answer general questions (they don’t have access to nhs medical records so can’t speak specifically). The link for this is here

Ask A Nurse

I’m sorry I don’t have specific experience I can share, but I hope you’ll keep in touch with us and be able to update us when you know more,

Sarah xx

Thank you so much for replying,  I will have a look at you recommendations,  I'm so sorry you have went through something similar and I'm sure everyone appreciates your help.