Lichen Sclerosus and stage 3 vulval cancer

Hi Clare 

thanks for sharing your story and I hope all is going well with you now.  
I too have had LS since I was a child - diagnosed at 7 years old - been under a skin specialist for ages and kept lichen at bay with steroid cream for 40 years -,now at 65 have dVIN 3 and just found out cancer in labia.

so far had 2 operations for VIN 3 and now waiting for lymph testing and MRI.  A bit overwhelmed but not surprised given my overall history- there is not must research done in this area - just hoping for a good result re lymph’s.   
 How is life for you now? 
cheers Ros

Hi Ros.

sorry to here you have cancer. I hope your nodes are clear as that's what has caused most of my side affects. Im doing ok now , learning to live this different life.  

Hi Clare

Big hugs to you - thanks for your response and I hope you stay well - although now a different life xxx cheers Ros 

Hi Clare 

thanks for your follow up from my last email - I am now having scans and and booked in for radical vulvectomy and node removal 1 st June.   I know you have healed well from your operation and are feeling ok now - my question is regarding the lymphoma you now have - is it able to be controlled and what do you do to assist with the side effects . 
My oncologist gynaecologist is trying to eliminate the need ffor chemotherapy or radiation treatment  after the Iop by removing lodes on the left  side.
would love to hear your thoughts? 
thanks again for your information so far - hope you are coping ok with the virus over there

 cheers Rocknees

Hi Clare, 

I too am Stage 3 vulval cancer. Had LS since 3yrs old and have attended Guys all these years am now 50. In 2016 I had a radical vulvectomy and r/s groin lymphadenectomy. Got sepsis and complications. In 2019 diagnosed with perineum cancer and had that too removed. Now have spread to left lymph nodes and just had l/s lymphadenectomy. I am due to start chemo-radiation in the next few weeks and really have no idea whats going to happen. Afraid to read Web as there's so much stuff I'd probably freak out. How did your treatment go and how did you feel? I've too also had menopause and the dreaded lymphoedema! What an awful disease, relentless...

Michelle x

Hi Clare

Sending hugs and all my best to you for your next treatment. I agree this is a horrible disease and one that just seems to keep on giving! Keep strong and positive taking one  day at a time - it’s all we can do. 

I am going ok since my surgery almost a month ago now and everything seems to be on track - no chemo at this stage - but further monitoring as this thing is relentless as you know, so fingers crossed.   I can’t comment on chemo as I have not had the experience however I have friends who have breezed through and others who found it more of a challenge.

You have been through a lot so take it easy and keep positive.  I know it’s a hard thing to face and is probably heavy on your thoughts at the moment. Keep thinking of a better future once this is over and behind you.

All the best and my thoughts are with you xx