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Looking for those experiencing persistent VAIN after Vulvar cancer

Posted by debvt @debvt, 4 days ago

I’m Deb, and this is my recent story: In 2020 a lesions/tumor was found on my perineum - I had a WLE to remove it and it was determined to be a stage 1B SCC tumor, but without lymph node involvement. The resection margin was clear of malignancy, but did show VAIN 3. I required no chemo or radiation. Lucky. Just close follow-up. For the last five years, I was going for checkups first every three months, then six months and then yearly the last two years. I would have a pap and then typically a follow up colposcopy.  Each time biopsies were taken of the vaginal wall/vault and they kept finding low-grade changes. Near the end of 2024 when the DNA testing during my pap was still showing the HPV virus, other high risk groups, we tried a 3 month regimen of imuniquod (sorry I know I butchered that ) vaginal suppositories. Not a fan - the side effects were awful, but I finished.

Fast forward to this August, 2025. This year’s pap was unsurprisingly abnormal, but the DNA typing now came back with both high risk (16) in addition to positive for other high risk groups too. And my colposcopy biopsies showed VAIN 2 in the upper right quadrant over a sizable area! Not at the surgery site. This is with close monitoring over the last five years. I’m devastated and defeated. PS. I had a total hysterectomy in 2006 - keeping my ovaries- because of persistent CIN3 , carcinoma-in-situ of the cervix.

The suggestion is to try another four month regimen of the immuno therapy, vaginal suppositories, but I am NOT in favor of that. Since clearly it didn’t help last time! I’m worse off. I don’t revel in the idea of surgery, but I would almost rather have another WLE this time of the vagina, and go from there. Any thoughts or similar experiences. And did anyone else have a less than stellar outcome using the immunotherapy drug? 


Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

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Helen, Volunteer Mentor | @naturegirl5 | 4 days ago

@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?

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debvt | @debvt | 4 days ago

Thank you so much for responding and reaching out. This feels so isolating at times and it feels liberating to be able to just talk openly about things in a safe environment. VAIN is vaginal intraepithelial neoplasia or HSIL (high grade dysplasia); WLE wide local excision.

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Helen, Volunteer Mentor | @naturegirl5 | 4 days ago
In reply to @debvt "Thank you so much for responding and reaching out. This feels so isolating at times and..." + (show)
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Thank you so much for responding and reaching out. This feels so isolating at times and it feels liberating to be able to just talk openly about things in a safe environment. VAIN is vaginal intraepithelial neoplasia or HSIL (high grade dysplasia); WLE wide local excision.

Jump to this post

@debvt You are very welcome. With gynecological cancers, in particular, I too have had difficulty talking openly so I understand that loneliness.

Thank you for the explanation of the abbreviations.

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carol1024 | @carol1024 | 3 days ago

What immunotherapy drug and have you not had to do chemo or is it not required? I had chemo and immunotherapy from March to June for stage 3C endometrial cancer with very good results as far as CA125 dropping from 1641 to 81. I had hysterectomy on August 20th and discovered I was HER2+ so I qualify for the more targeted drugs. Waiting for 6 weeks post op before I start and it's taking FOR ever...lol
Just curious if chemo would benefit you.

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carol1024 | @carol1024 | 3 days ago
In reply to @naturegirl5 "@debvt Welcome to Mayo Clinic Connect and to your Gynecological Cancers Support Group. We have an..." + (show)
Profile picture for Helen, Volunteer Mentor @naturegirl5

@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?

Jump to this post

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!!!!!

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