Hi Clare

I read your post with interest as my partner has a confirmed diagnosis of lichen sclerosis - should she be having any kind of follow up screening do you know? She was diagnosed around 2 years or so ago but has had no follow up. She had a radical hysterectomy some years ago so no longer has smear tests 

I'm just ending treatment for an early  non palpable  screening detected breast cancer so know how important early detection is ! 

Many thanks for raising this subject xx

Hi,

It is important to have at least a yearly check up with lichen sclerosus, unfortunately not many Gp's know a lot about this condition so should be referred to a specialist to make sure your using the correct steroid and using them regularly as research has shown regular use lowers the cancer risk and helps stop or slow progression and flare ups. Should also be using emollients to wash in and use as a barrier and moisturiser. 

Thank you Clare ..really helpful x

Hi Clare,

I also have lichen sclerosus, I was diagnosed when I was 27, now 33. I was misdiagnosed for 4 years by which time it was quite severe. Since 2019 I've had one area that has been an issue, a biopsy showed vin 1/2, but no treatment was done as I was pregnant at the time and the three gynaecologists I saw said the vin had cleared. I then saw my dermatologist this March, who decided to biopsy two areas. That was 5 weeks ago, I hadn't heard anything until I got a letter at the weekend stating I'm being referred to gynae oncology under the 2 week pathway. Needless to say, I'm petrified. I contacted the hospital this morning but just been told to wait for a call. I can't help but feel it's not going to be good news. Thanks for reading, Jo.

Hi Jo

It's a worrying time and you will think the worse.

could be your VIN 1/2 is now VIN 3 so you need treatment which could be surgery or Aldara cream.

Hopefully you won't have to wait much longer. 
 

Clare 

Thanks for your reply Clare. That's what I'm hoping it is. I've kind of prepared myself mentally for a WLE as it was discussed before, so hopefully that will be the only treatment needed.

Jo 

Hi Clare

I was diagnosed with Vulva cancer in October last year. I had a total vulvectomy in February and a sentinel lymph node biopsy which showed that the cancer had spread so I had my lymph nodes removed from both sides of my groin at the end of April.

I start radiotherapy in June and I was wondering if you could let me know what usually happens at the first appointment? Do you find out how much radiotherapy you need?

Thanks in advance.

X

Hi there 

Your first is the planing one , so they scan you (normally need a full bladder) and see where they need to aim the radiation and put tiny tattoo dots in 3 places, both outsides of thigh and one in the middle of mons pubis (where hair is) so that each time they do the radiation they line you up so get  it in the exact place each time.(could be on a slightly different places)

They will explain everything to you and what happens and go through all the side effects and what they can do to help during this time.

Normally it's 25 radiotherapy treatments , Monday to Friday over 5 weeks. 

Clare 

Thanks so much for your reply. That's really helpful. X 

Anytime , message me if have more questions.