Newly Diagnosed Vulvar Melanoma

Hiya… having just had my labia removed for the same reason I guess I can help.  

How old are you?  Area you live in?  Job?  

Firstly, I don’t know if you’re willing.  But have you had a look yourself?  I knew straight away what mine was when I saw it.  I am a bit of a biology geek so then went to all the known sites etc and researched it!!  Melanoma focus is a good one, MacMillan- you’re here.  I researched the hell out of it.  But if you don’t want to, we are all different.  

Your first appt will be to assess the growth, size, what it’s covering.  You may have a biopsy done.  This will be local anaesthetic and will leave you a bit sore.  I had 2 and each had dissolving stitches.  You may need a donut to sit on!  

Depending on where you live, the results should be fast tracked.  They call mucosal melanoma aggressive.  I prefer fast growing.  Mine were back in 3 weeks.  You should be under gynaecologist, oncologist and dermatologist due to what it is and where is it.  

The next stage will then be discussed at a multidisciplinary meeting.  However, your first meeting should tell you what the process is.  

Get a telephone number for your local MacMillan nurses.  They should have access to your records and they can explain it in basic English if you don’t like medical terms.  

The next list is what I thought up; 

As you can tell by the number, I have lists of questions.  

4 PRE SURGICAL QUESTIONS

WHEN WILL RESULTS COME BAXK FROM PATHOLOGY FOR FULL MELANOMA

When you get your melanoma pathology report, look for these words/numbers:

Melanoma clinical nurses team

Photos - check and take a photo

Lymph nodes Stringy pea size lump

Could it be from another mole that’s spread?

If spread, how long between operation and other treatment?

How long is the operation itself?

Study… 1cm margin?

Operation?

What bits will be taken?

How will it be sewn up?

Will I have issues with urination and sex?

Can we work out how long it has been growing?

Will they take a chunk of vagina?

Will I need a catheter?

How do you stop any sticking together of the wound and healthy tissue

Will I get to know exactly what they will do operation wise, ie diagrams?   

Will it be chemo/radiation?

What’s the frequency of follow up Checks?

Will other moles do this?

Will you remove any other moles?

District nurses? Wound care?

Maternity pads thick

Home same day?

Sitz bath 

If you have got this far, I will be happy to share my experience with you.  Mine was 4.6mm deep and 3 cm wide, circular, no spread so stage 2c, and in melanoma terms pT4b.  I only had my left labia removed.  Yours may be more if it’s covering the labia and vulva.  

Joanne x 

Hi BAF and welcome to Macmillan and the vulva group.

I’m sorry to read of your diagnosis, but I see you’ve already had some good advice from Joanne who has shared her experience with you.

Picking up on your question about a second opinion, there’s a link here on how to go about this if you decide you’d like to

Getting a Second Opinion

Macmillan also has the following information, which includes vulval melanoma, and it may help you to feel a little more prepared.

Vulval Cancer

I hope you’ll come back to let us know how you get on at your appointment.

Sarah xx

Hi! I am 49 yo. I work for the occupational safety and administration. I had an open ulcer on labia majora that wasn’t healing. They did a biopsy of that and two other spots in labia minora more superficial. Rushed analysis confirmed melanoma. First consultation is this Thursday. Thank you so much for this information!

Wow!  Young.  So you’ve already done the first thing, the biopsy.  I’m guessing this appt will chat about any surgery.  

I would think of logistics as well as any surgery.  Your ‘village’ to look after you.  Travel etc.  

You may have scans being booked as well, CT and MRI etc.  This will show if there is any spread.  Depending on your frame of mind, even if it has spread there are people on these forums who have stage 4 and have had it for years!! I use this to calm myself, when my thoughts spiral.  

I’ve only been on this journey since July 1st.  Things do tend to happen then slow down… the happen again… and some will be frustrating.  

jo x 

I can’t thank you enough for your input. I am freaking out a bit but trying not to believe everything I read. I have the most amazing circle of people around me to get me through this. Very lucky. My 22 yo son is first in line!

Yea, the world is full of information.  I have read it all, the thing is to read it, process it and then disregard any that is not necessarily to do with you.  I was told to stick to the decent pages, but you do end up down the rabbit hole.  So long as you remain thinking and not that all you read is true then you’ll be fine.  

Glad you have a village.  

Let us know any update.  We’re all here x