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

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.

@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.

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.

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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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?

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?

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.

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.

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

I have melanoma vulvar cancer. Had first appt. at Mayo Dec.6th and they took out ulcerated tumor to biopsy and found that it was melanoma vulvar and had a radical vulvectomy seven days ago. They did a sentinel node biopsy, took out the lymph node and it was clear. I go back to Mayo tomorrow morning for my check up. Was hoping to get the drain out but it has to be below 20 cc a day for two days and I am still over 300 cc for one day! They said not to worry and it could stay in two to three weeks to get fluid out so there is less of a chance of lymphedema in my legs. Recovery should take four to six weeks and I will be monitored closely after that for a recurrence but so far, I have been extremely impressed with Mayo Clinic and am happy I am there!