Radical Vulvectomy

Hi Ex Lancashire Lass 

It's Steph here from the Community team, I hope you don't mind me popping in here to bump your post so that more members see it.

There are a few members in the group who have been through similar surgery. I will tag a few members who have commented recently about this in case they feel comfortable sharing their feelings with you.

Pudgy wombat 

Pippa75 

Hellyoo 

 vulval cancer warrior 

In addition to talking things through with members of the forum, you would also be welcome to contact our Support Line for a chat. No question is too big or too small and it might help just to be able to talk to someone who's there to listen. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

There's also support available for you through The Eve Appeal charity.

Please do let us know if you have any questions or if you’d like some help using the Community or further support with anything at all. You can contact the Community team privately by email at community@macmillan.org.uk

Thank you Steph, much appreciated 

Hi there. I had my surgery in March of this year and totally understand how you’re feeling.  I’ve still not plucked up the courage to have a look but I would like to in the next few weeks.  I feel it’s an essential part of my journey and not letting the cancer win. For a long time I didn’t feel this way. It’s a very personal decision and you have to do what’s right for you.  

have you had any further treatment?  I needed up having radio and chemo after surgery xx

Hi Pippa, I am glad I’m not alone in not being able to look after my operation in June.  My surgeon was, in his opinion, completely certain that all the cancer was removed and the surrounding tissue was clear, therefore no further treatment was necessary.  Of course I have to be regularly monitored, the next time is October.

I hope you have finished your treatment now and are on the road to recovery.  I still feel tired, but that could be my age of 73, it is 9 weeks tomorrow that I had my operation.

thank you so much for your response and hope we both can muster the courage to look.

Feel free to contact me if you want to.  Take care.

• I had my op in January and still haven't looked and don't want to. However I never used to look down there before the op. I remember the midwife asking if I wanted a mirror when I was giving birth and I was like no way. I am sensitive about it though and haven't had any sexual relations since as I am have cervical cancer aswell and still undergoing treatment. Maybe I should as I was also embarrassed about the area and never had smear teats, which if I had they could have caught the cancer earlier and it may not have got to stage 4. My vulva and ovarian cancer was complete with surgery and they were able to leave me with a clitoris but had both sides cut away as there were pre cancerous cells on the other side. I probably sound all over the place but that is my mind at the moment. I have been at the hospital all day having chemo and radiotherapy so excuse the waffle. I hope you continue to get the all clear and take care of yourself  you can only do what is right for you. Everyone is different x

Thank you so much for your response, I really appreciate your comments, especially as you are recovering from your treatments today.  As you say, we are all different.  Like you I didn’t look down there until I had annoying symptoms which made me look and then contact the GP.  Thank goodness she was on the ball and sent me for tests.  
I wish you well with your treatment.  Thank you again.  xx

Hi Ex Lancashire Lass ,

I had similar surgery- I had my sentinel nodes removed, which like you  was one node from each side. I also had a WLE. I can totally relate to your fears around looking at the surgery site. I took my time and focused on my recovery initially. 

I wish you a speedy recovery and I am here to chat if you have any questions or would like someone that has been through similar to talk to. 

Thank you so much for your comments, when these things are diagnosed you think you are on your own, but it is important to know that you aren’t.  I am not sure what a WLE is though.  I hope your recovery is going well.  Thank you again.

Hi Ex Lancashire Lass ,

I appreciate the feeling of being on your own. I am yet to meet anyone else that has had the same cancer as me, but thankfully the online community brings us all together. 

WLE stands for ‘wide local excision’. It refers to the area of skin they remove during surgery. That said, it says vulvectomy on my GP records. 

My surgery was 2.5 years ago so I am fully recovered and just have 6 monthly check ups now. 

Thank you for explaining.  Mine said radical vulvectomy.  So pleased you are fully recovered.  My next appointment is October.