Vulva cancer

Hi and welcome to the online community

I'm sorry to hear that you've been diagnosed with vulva melanoma. Mucosal melanoma, to give it it's medical name, is quite rare which probably explains why you haven't had any replies.

I've had a look in this group to see if I could find anyone with this diagnosis and found SarahT57 posting about it earlier this year. Hopefully she won't mind me tagging her into my reply to you and may be able to help you further with questions you might have.

When you have a minute, it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi , I’m sorry I didn’t see your post before - I keep a closer eye on the melanoma group.

 I’m very sorry you’re going through this, and please ask any questions you have. Everyone’s story is different so I won’t have all the answers but I’ll be happy to help if I can!

Do you have a treatment plan yet? I had a fairly major op to remove my melanoma at the end of January, but I’ve recovered pretty well and am now on immunotherapy to prevent recurrence.

Hi SarahT57 I have been told that they are going to give me a partial vulsectomy and remove full clitoris.

They are also going to check my lymph nodes to see if has spread. had pet scan and mri they where clear.

not really  being told much.

Hi

That’s pretty much the operation I had - I had half my vulva (including my clitoris) and part of my vagina removed, and a skin graft. They told me that they wouldn’t know until they operated what the best way to deal with the wound would be. The operation was at the end of January, and I’ve healed fairly well although I do get a bit of discomfort occasionally. Because I had a skin graft I was on full bed rest for 3 days, and was in hospital for a week and a half altogether.

I’m sorry that you feel you’re not being told much - I keep a notebook with all my questions and write down the answers too -it’s often hard to take it all in at the time.

It’s good news the melanoma hasn’t spread.

Happy to try to answer any questions you have x

Thank you. I already had an idea that they where going to do partial vulvectomy and thought they may take hood and tip of clitoris but when doc said no we taking it all something inside broke. Up until now I've been fine thought if they offer radiation fine chemo fine may lose my hair but to do this it like they taken my women hood away x

I’m so sorry x

My surgeon said he had known women who’d had a partial removal and ended up in agony so it was better to remove it all. It’s not fair though, is it?

No it's not and it's not like you feel that you are getting the support you need  if it weren't for groups like these I wouldn't have half the stuff I have to help with aftercare. 

Canada - I had the same experience. Not enough information, somewhat roughly handled emotionally.  Left feeling the surgery suggested was way overkill.

It started with the slightest ulcer which on a biopsy turned out to be cancer. It had been completely removed during the biopsy. I don't think it was even Stage One, or if so it was just barely. The specialist doctor (highest in rank for this area) quickly drew the diagram we have all seen - what surgery I would have to undergo. Partial vulvectomy in which he said he would try to save part of my clitoris, but would remove my lymph glands, even though there was no sign of a problem there, and I hadn't been tested to see if there was something going on with them. I was stunned.

I refused the surgery. . I made some life style choices - quit smoking and changed to a keto diet. Two years later, no sign of anything. I know this doesn't mean I'm cancer free. The hammer could drop anytime. I've learned to live with that, and have made contact with the medical assisted death people, which also gives me some peace - knowing I'm in control of how much I can stand.

This is a decision each of us has to make. I had slight cancer (lol), I'm 72 year old and my kids have grown up. Circumstances matter.

Bless you it is so hard to know what's best I know mine is fast growing and next to my clitoris. I'm 48 and have a 7 and 5 year old at home so I have no joice but to have the operation. You are a very brave lady and thank you for sharing

Hi! I also was just diagnosed with vulva melanoma. I just competed my third surgery 5/29. They removed the inner labia and side of clitoris and the hood of clitoris. It has been almost a week and I am just starting to feel better. I have lots of swelling and have been constantly icing. I am 49 and I had melanoma on my torso five years ago. 

There is a big difference between mucosal melanoma and melanoma. Mucosal is found I the mucosal areas of the body. My melanoma was on the skin of inner labia and also near clitoris and was visible. My first two surgeries were unsuccessful in getting it all and having clear margins.  It is hard to find info on this and it is rare.