LS and cancer?

Was told that too. Thinning of the liner . Do not know anyone.

I go to a vulvar specialist told and she told me that as long as I follow her instructions about clobetasol (I am now on maintenance dose of once a week) and come in to be checked on regular schedule (once a year now, was twice a year for awhile) that the chance of getting cancer from this is very, very low. She said that in all her years of practice she has only had one person develop canver and that person had stopped using the clobetasol and had not come in for regular checks. I know it is useless to tell you not to worry, but please know t is very rare to develop cancer as long as you are seeing doc and following their instructions. Good luck and my positive thoughts are with you.

Yes. I have vulvar  cancer from LS. I followed up regularly, used the clob etc. last year i noticed a small cauliflower type lesion above my clitoris.  Biopsy confirmed cancer. Within two weeks I had a partial vulvectomy and lost my clitoris. I am at a year and clear margins. Every day. I think of this every day. I still can’t wrap my head around the fact thenLSbturned into cancer. Ask me any questions. 

The connection between lichen sclerosis and vulvar cancer is vulvar intreapithelial neoplasia (VIN), which is the presence of pre-cancerous cells. Having lichen sclerosis puts one at risk for VIN, which then puts one at risk for cancer. Many people who are diagnosed with VIN have lichen sclerosis, however many who have lichen sclerosis will not get VIN. The HPV virus also puts people at risk of VIN. 

The risk of VIN and cancer are the main reason we are told to check ourselves in a mirror at a regular basis. If you develop a discoloured spot that does not go away you should point it out to your gynecologist. They will biopsy it and if the spot is small enough, the biopsy alone could be enough to remove the cells from the area. If not, there are other treatments to remove it depending upon where it is and the severity of it. I am on a 6 month recall to see if it returns after treatment. Patients can continue to get bits removed for years the aim of which is to not let cancer develop. 

I was told to look for red spots that did not go away, however I noticed a light brown spot that looked like a freckle that was growing. I had to point it out to my gynecologist who didn't see it during an examination. It turned out to be VIN.  

When you get your biopsy, I suggest requesting stitches. I've had 5 taken from 2 different areas and not all doctors give them. Depending upon where the biopsy is taken, it can hurt for some time and stitches speed up recovery. I find that the emu oil I use as a moisturizer softens up the suture quickly. Also make sure you are well hydrated before you go. When the skin is well hydrated a needle entering the skin  for whatever reason, blood test, injection, freezing etc., hurts less. 

Best of luck with your biopsy.