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Trying to connect with Lichen sclerous and vulvar cancer women.
Gynecologic Cancers | Last Active: Jun 29 12:53pm | Replies (52)Comment receiving replies
I had suffered with lichen sclerosis for quite a few years before being diagnosed with it. Always thought maybe yeast infection or being sensitive to detergents until I developed a lesion on the right side of vulvar. Biopsy came back vulvar cancer stage 1B. A life changer as many I’m sure will say the same.
No surgery had 32 rounds of radiation and 2 chemo treatments. They wanted me to have 5 chemo treatments but I could only stand 2. It is a year later. Had 2 pet mri’s each time came back good. But still live in fear each day. Even the smallest pain in a toe makes you think is it back. Crazy! I do have late side effects from the radiation. But I’m alive . If anyone would like to share their experiences I would love to hear from you so we are not so isolated. Thanks for listening!
Replies to "I had suffered with lichen sclerosis for quite a few years before being diagnosed with it...."
@andwho good morning I get diagnosed with Laken sclerosis back and about 2015. Had a radical valvectomy in 2019. Endured radiation and chemo. It’s been a long journey ladies six years of diligence biopsies, constant monitoring and now it’s moved to my anus so more biopsies more appointments another specialist in surgeon and waiting results of biopsies on the same area looking like the cancer is back after 67 years no the isolation well, it’s funny our kind of cancer. Everybody asks what kind soon as you mention it they shut the hell up. Don’t know what to say. I can only say my diligence hopefully caught it at stage one not stage three like last time. I’m finding it to be quite frustrating. All the creams do damage. One thing after another have been staying off the site for obvious reasons like to be words of encouragement not words of burden say a prayer.
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For three years I have been going to a good dermatologist with a lesion on the left labia. He diagnosed it as lichen sclerosis and I was put on clobetasol. He tried a few other orintments when that wasn't working. Nothin did any good. Don't know quite why we never did a biopsy until this June but it revealed I have ExtraMammary Paget's Disease. Found out in doc terms ExtraMammary means NOT in the breast. So in the vulva. I am now in treatment for that condition. But it has been interrupted by the sudden loss of vision in my right eye, followed by an 8 day hospitalization. And after that I caught covid and just got home today from a 10 day stay in the hospital. I'm 84, so no spring chicken. Not trying for sympathy. Just stating some facts. Glad to answer any questions.