@debvt Welcome to Mayo Clinic Connect and to your Gynecological Cancers Support Group. We have an active group here who have experienced vulvar cancer. I'm going to tag a few of them and hope they will respond to your questions. @andwho @bobette1 @wheaton @scm @susanpagets
Five years after your diagnosis in 2020 and now in 2025 with this new finding I can understand your feelings of devastation. I'm glad you've come here where we can offer support and experiences from others.
Here is an ongoing discussion that you might like to read:
Vulvar Cancer: Anyone Else?
-- https://connect.mayoclinic.org/discussion/vulvar-cancer-1/?pg=21#chv4-comment-stream-header
I did not have vulvar cancer so I cannot be helpful with my own experience.
I was diagnosed with endometrial (endometrioid carcinoma) cancer in 2019 with a recurrence in 2021. In 2019 I had a radical hysterectomy that included ovaries, fallopian tubes, and cervix. I had radiation therapy in 2021 after the recurrence was diagnosed.
Could you explain some abbreviations you've used for those of us not familiar with these terms? What is VAIN2? WLE? SCC is Squamous Cell Cancer?
Same here. Endometrial cancer stage 3C in Feb. Some lymph nodes included. The chemo did shrink and resolve a lot of issues. Had hysterectomy on Aug 20th and found I'm HER2+ meaning I Qualify for the more targeted drugs. He removed no lymph nodes, which I thought was really bad but he explained why. Waiting 6 weeks post op to start more chemo and immunotherapy and the new drug. I hope I tolerate it as well as I did the chemo. I tell people he took everything but my tonsils. He found cancer on back side of left ovary and told my daughter as soon as he saw that he knew I was stage 4. Cancer SUCKS!!!!!