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Posts: 6
Joined: Dec 2011

Hello. My regular doc saw "something he didn't like" and sent me to a GYN. She told me I probably had lichen sclerosis, but she did a biopsy anyway. Turns out I have squamous cell carcinoma. I have an appointment this week at Barnes Jewish in STL. I am scared to death. HA. I haven't told my children or my family. I am waiting until after the appt in STL. Any information would be helpful. Carol

beckyracn's picture
Posts: 324
Joined: May 2009

so sorry to hear of your dx. Hang in there! What kind of info are you looking for?

Posts: 6
Joined: Dec 2011

ANY INFO!! This doesn't seem real. I see the dr tomorrow morning. Carol

Posts: 55
Joined: May 2010

Oh WOW that is where I went last year when I was dx with vulvar cancer. If you have any questions let me know.

Posts: 6
Joined: Dec 2011

OK first of all ... who gets VULVAR cancer? I had never heard of getting cancer THERE before! The doc in STL is gonna do another biopsy tomorrow and set me up with a surgery date. That's what his nurse told me anyway. Am I going to be really disfigured down there? How do they know if this has spread? This doesn't seem real to me yet. Carol

longtermsurvivor's picture
Posts: 1845
Joined: Mar 2010

not knowing what is going on. It becomes easier once you have a plan of action. You really have to live your life a day at a time right now.

Vulvar cancer isn't a super common cancer. Different people get it. It can be triggered by HPV, particulary 16 and 18, or arise in a vulvar dystrophy. Not from lichen sclerosis, but rather from a mixed dystrophy. Ultimately, no one knows why some get this form of cancer and some don't.

You will have a workup, which will include scans to look for involvement of lymph nodes in the groin and pelvis, then you will be in a position to discuss treatment. Treatment is oftentimes surgery to remove the cancerous area, as well as lymph nodes in the region. If caught early enough, the node removal is oftentimes limited to the affected side only. But you won't know that for certain until the workup is done.

The surgery heals remarkably well. And is not horribly disfiguring, but again it will help you immeasurably to hear all this from your treatment GYN oncologist.

You are at a good place for treatment. Barnes is a top-drawer institution for this, so you won't need to go searching for a treatment team. BTW, I'm currently in treatment in st Louis also. Different cancer, I've been receiving chemo and will be starting radiation at St John's Mercy soon.

Best of fortune to you!

Posts: 6
Joined: Dec 2011

Hello again. I go for surgery at Barnes on Tues 1/17. Dr Massad. They re all so very nice. I just hope that after the surg I will be over with this. No spreading, etc. Yah right, I know. But I am hoping ... Carol

Posts: 181
Joined: Jan 2009

Hi Carol,
Hope your surgery went well today and that you are recovering comfortably. Take it one day, one doctor visit, one test at a time. A year from now (probably sooner) this will all be just a memory. Yes, cancer can occur on the vulva, and all women need to be aware of that, there is no shame, it is cancer. You will be fine, I have read many stories of women with vulvar cancer that survive and go on to lead a happy life..I am one myself.Hang in there, you CAN get through this! Happy thought= happy days.

Posts: 6
Joined: Dec 2011

OMG I had surg 5 days ago. I am still in so much pain. The area is still swollen and bleeding still in places. And now the area is starting to smell really bad. I am going to go to the doc tomorrow. I don't. Wish this on anyone.

Posts: 1
Joined: Dec 2011

I am scared to death. I went to the doctor, because of bad pain and found out i have to go back into the doctor for a biopsy, due to possible vulvar cancer. Can anyone share on how much I should educate myself so I ask all the right questions. I have had cancer in the past with mets. Not female. But just the word cancer gets me running.
Thanks Sandi

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