Vulvar Cancer: Anyone else?

I had a radical partial vulvectomy on October 25 and 6 lymph nodes tested/removed. At the time the lymph nodes appeared to be negative for cancer but the later testing on the frozen tissue showed one of the lymph nodes positive with metastatic carcinoma. I have a post surgery appointment with the surgeon and assume she will discuss this finding. Has anyone else had this experience?

I had a radical vulvectomy with sentinel lymph node removal, on both the right and left sides, on September 11. My cancer is invasive. The lymph nodes on the right side showed positive on the PET scan before surgery. The testing of the nodes showed they could only be detected microscopically, however. Due to this, my oncologist said they wouldn’t do radiation now. I have a follow up appointment in December, and every three months going forward.
I know the waiting for your appointment is difficult. I don’t know what the protocol is in your case, but I’ll send good thoughts your way.

Thank you so much for your reply. I’m sure I will know more after the appointment with the surgeon tomorrow and, hopefully, will be less stressed after I have an idea what the plan forward will be.

I have had vulvar cancer 3 times. I’m sure it’s back now!! (Appt 11/28! 3 weeks!)
I had a left side full vulvectomy my 1st surgery. The 2 others were areas they cut out! 😢
If you have an questions let me know. Wish you the best!!!

@kimferguson9968, oh what a sinking thought to feel sure your cancer has returned, again! What symptoms or indications are telling you it's back? ((hugs))

Thinking of you!

I will have radiation therapy. I checked out the group for that but couldn’t find any posts. Has anyone had experience with it
I also have an infection, which is being treated with oral antibiotics.

Hi I had a cyst removed from my right side of vulver
I had this for about 5 years and thought nothing of it I went to a gynecologist to get a IUD removed and he saw it and said he would book me in for surgery remove the cyst and replace IUD waited 24 hours and found out that was stage 3 going on stage 4 cancer I panicked, I went back to gynecologist 2 weeks later removed sutures and was told he was confident got all the cancer when he removed lump that I thought was a cyst 6 months later tested site again no cancer cells found them back 6 months later all clear.

Hi, I had radiation therapy after chemo for vulvar cancer. You might want to check with your doctors about starting radiation treatment with an infection. They might want to wait until you have finished with the antibiotics and no more infection. Believe me, the slight delay will be worth it! Radiation can affect your white blood counts, so better safe than sorry. A few pieces of advise that I wish I had been given -
you will be tired so listen to your body,
if you can, have someone drive you to treatment, even if you think you can do it
Before you start, go out and buy “boy short” underwear in 1 size larger, you’ll be much more comfortable
Ask your radiologist about cream to use, in case you develop burns (like a sunburn)
I am more than happy to answer questions, if you have them. Let us know what the doctors say. You’ve got this!

@debramcrae, there seems to have been a small stroke of luck involved in your story, although I bet it didn't feel like that at the time. Do you continue to be monitored every 6 months or yearly? What follow-up testing do you have, if any?