Squamous Cell Vulvar Cancer: Who out there has this cancer?

Yes, Lichen Sclerosus is a risk factor. The first person that saw me was sure this was the diagnosis. I remember saying to her "I don't need a biopsy for this?" her response: "no. I've seen this a million times" and yes, cancer can arise in 4-5% of the cases, but it was not what I had. The minute you hear someone talk like that it should be like a neon sign, and get a second opinion. Here's hoping that you get the care you need as soon as is possible. I was angry, but soon found out that was an unproductive place to be. Wishing you the best ...

Mine is most likely from Lichen Sclerosis, which I was diagnosed with. Cancer is a known risk from Lichen Sclerosis. I am disappointed that they didn’t consider that at the beginning instead of insisting that it was Herpes.

Yes. Misdiagnosed 3 times (including at the first surgery). It was not until the complete pathology came in after the first surgery that they knew it was a cancerous lesion. I was angry as all get out when they said I had to "return to the OR" for a radical ressection and bilateral inguinal node dissection. This is a rare, and not often seen cancer in most settings. I demanded a biopsy as well, because of the pain. Mine was HPV related (at age 73 and widowed for 27 years). In the end, this worked to my advantage, as HPV related cancers tend not to spread as quickly (but had to get a second opinion at a cancer center to find that out). The good news is pathology 2nd time around was totally clean and no lymph nodes cancerous. I would say, get as much information as you can prior to surgery -- from a cancer center if possible.

I woke up one morning with extreme pain. It took 7 weeks of extreme pain for me to get the diagnosis. My primary doctor thought it was Herpes. After 3 weeks of treating me for Herpes and it was only getting worse, she referred me to a gynecologist. The gynecologist also thought it was Herpes, probably because that was the primary doctor’s diagnosis. Thankfully, the gynecologist decided to cover all bases and did a biopsy. I have an appointment with an oncologist next Wednesday. Needless to say, I am not happy that both doctors had such tunnel vision but thankful that the gynecologist decided to cover all bases since the medicine for Herpes wasn’t working and did the biopsy. I am 85 years old and my husband and I have been married since our teens. At my age I wouldn’t have thought that Herpes would be the first thought. I wonder if any other people have had a similar experience.

I have a little more clarity. I am scheduled for surgery 8/23. It will show what I need to continue to do once the results are in. I’m praying hard for Stage I. Hoping God has a sense of humor really.

Mine was treated with only surgery. Luckily it was caught early...could have been earlier had I had a clue that this cancer existed! I was aware of the lesion for months....just attributed it to menopausal changes.
If it is what you have, I hope it's early stage.
My gyno/oncologist, who was not my surgeon said had he not removed my stitches himself he never would have believed I'd had a vulvectomy.
Follow instructions for after care and be proactive!

Hi, I haven't been diagnosed yet, but I have a strong feeling this is my problem, my appt with a gynecologist isn't until the end of the month; anyway; I want to arm myself with some knowledge and would like to know what are the possible treatments for Vulvar cancer are, does it include surgery, etc. Thank you in advance for your help and incite.

Thanks for the link.

So far, things are going ok. I’m having some pain, but nothing too serious. The doctor gave me some lidocaine and aquafor to use on the sores and that helps some. I’m getting radiation in the groin as well as the vulvar area, but no pain there yet.

I’m still working almost full time. My treatments are first thing in the morning, and then I go straight into work. So far it’s been ok, but I’m not sure how much longer I can keep up this schedule. Fortunately, my work is very understanding about letting me take whatever time I need.

@bearl how are you doing? Do you have more clarity about your diagnosis and a treatment plan now?

@lizbrochu, did you get any answers about the skin changes and what can be done?