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

Thank you so much for reaching out. I. Saw my oncologist and went as expected I have the pet scan this Tuesday and if all goes well surgery will be scheduled after that. It's so frightening not knowing anybody else that has had this particular cancer being that it's on the outside of my body is even worse because it's so sensitive I can't sit comfortably I can only lay down and I'm trying to work up until I have the surgery and I have a sit-down desk job. Good news though he thinks he can get it all with surgery and I won't need chemo or radiation which is a blessing

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Hello,
Currently awaiting my online appointment with my surgeon. Have had biopsy, CT and PET scans.
Trying to avoid tight pants, lol! So far just minor discomfort, but of course I am more aware since my diagnosis.
I am a 3- Day walker for Breast Cancer....so of course I get diagnosed with something I never even new existed!
I had been sharing with the nurse and PA how absolutely blessed I was to be so healthy and able at 61 to be participating in a 60 mile walk. Then the other shoe dropped, I guess. I agree with the previous comment that practitioners should share what they are looking for. I knew I had this "thing" down there for a while. Thought maybe my old episiotomy scar was irritated. Meant to ask about it and forgot until she asked me about it. Had I been better informed, I may not have waited.
We will see what that costs me once staging is complete.
Thank you for being here. Nobody knows except my husband yet.

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@sillywabbit. Your post shows that you are surprised and realistic at the same time. Were you stunned when you found out that the irritation you felt was something else? How are you feeling as you wait to meet with the surgeon?

I'm so glad to hear that your primary care provider does a thorough examination including external. It's a place on our body that we can easily see so don't notice anything until like you said we feel some irritation or pain.

Bravo to you for walking for breast cancer.

I hope your appointment with the surgeon will be very soon. Will you come back here and let me know what the treatment plan will be?

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Had my online surgeon appt. yesterday. We will schedule surgery soon. He gave me confidence that he expects this to be one and done. Said he actually loves treating this cancer because the outcomes are usually great. I feel much better after talking with him. PET scan showed nothing and CT has an area he wants to look at. He is a few hours away so we will do an exam on a Tuesday and surgery Wednesday.
Thank you for checking back.

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@sillywabbit. Oh, I'm so glad your surgery will be scheduled very soon and that your surgeon provided such hopeful information. It's great that the PET was negative and that your surgeon will examine the CT more closely. You mentioned that he will see the surgeon on Tuesday and have surgery on Wednesday? Do you know those dates yet?

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Yes. It's looking like Nov 30.

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I have had twice in 14 months. 2 vulvectomies...first "simple" is ironically more involved a painful and that was my first one. I was so scared to have a 2nd one year later, but the area was caught sooner and was much smaller. I was back to teaching AND bartending in a week. This is easier to fix than some squamous diagnoses. I was so scared. I previously dealt with endometriosis and then cervical then most recently the vulva. Today, they decided a few bleeding episodes 1+ post an early menopause was cause to do biopsy on uterus/endometrium. I feel for you. I wish it was an area like my finger or knee that everyone would love to hear about. It's such a private area and hard to speak with anyone other than my doctor and apparently complete strangers right now. If you'd like to reach out, feel free to let me know and I can contact you somehow without posting here?? Not sure how. But I could use a support group and have yet to find one in my area that deals with this. Anyway, thanks for "listening" 🙂 Trying to keep the smile and the faith - Army Brat/KC

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Looking for advice for post-surgery. Is there a donut pillow you recommend? I would like to be as prepared as I can. So far, scheduled for Nov. 30. Any other tips?

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