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

Yes. That's me. 2 lymph nodes positive. USING HRT. Radiation and chemo. I found this stage 3 when I was changing out my fem ring HRT. Almost 10 YEARS ago. They gave me 4 years. Chemo and mostly radiation. I'm doing fine except for the lymph edema. I have annual paps

Hi. I was using HRT when I got the diagnosis. Please respond. Bartholin gland carcinoma.
2 Lymph nodes positive and they removed 7. I have lymph edema.

Artist64
I had Bartholin gland carcinoma. 2014. Seven lymph nodes removed.
You are the only one I have ever heard from with the same cancer.

Welcoem @kat250, you can read more about @westnp1's experiences by seeing all their posts here: https://connect.mayoclinic.org/member/00-854d21eed0d4666d318169/activity/comments/

I also hope they'll return to answer your questions. In the meantime, I look forward to learning more about you and your journey. I see you've had a vulectomy. What further treatment has been recommended due to the sentinel lymph nodes proving to be positive? How are you doing?

Hi westnp1, I saw your post about SCC, stage 3. This is me! I already had vulectomy with sentinel nodes positive on both sides. Can you tell me your story, journey and how you are now doing?

Does anyone have any recommendations to help with the pain and burning? I have Lidocaine spray and gel but neither helps very much. The tumor is very fast growing and the larger it gets the more painful it is to sit, walk or even lay. I am scheduled for surgery on October 23 and the surgeon says “the only thing that will help with the pain is the surgery “, which is still 4 weeks away.
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If I understood her correctly, she will start with one. I will repost when I know more. Right now the schedulers for the 2 doctors are working to find a date/time that works for both of them.

@caddo I’m very happy that you feel supported here. It is a relief that the PET scan showed no spread of the cancer. Did the surgical oncologist tell you how many lymph nodes would be removed for sampling? Once you know more about what will happen during your surgery will you let us know? I’m quite certain there are others in this discussion who can give you support and advice on what to expect.

I had a PET scan on September 28 which showed no indication that the cancer has spread. My oncologist referred me to another oncologist to see if it is in my lymph glands at the same time as the vulvectomy. I met with the second oncologist and she said they were going to remove lymph glands, not just check them. I had obviously not understood what my oncologist told me. I am thankful for this support group. It was so helpful to read about other’s experiences. I had no idea the extent of what will be done and the recuperation required.

Hello @cynthiat. When did you have your first surgery for this? and do you have treatment through a cancer hospital? I can only tell you my story. Diagnosed in April at age 73. Definitely HPV related (which was the biggest surprise in this). So little (comparatively) is known about this cancer, but I did a lot of research in medical papers because the hospital I went to treated the "here and now" -- so that treatment included two surgeries (because they didn't get it all in the first) and now I have to return every 4 mos. to be checked. One thing I have learned is that you need to be with a medical team who specializes in your type of cancer, and for whom this is standard fare. Feel free to reach out if you wish.