Anyone have invasive squamous cell carcinoma of the vulva?

Posted by smmontano @smmontano, Apr 3 4:41pm

I was just diagnosed with evasive squamous cell carcinoma of the vulva. Is there anyone out there who has this?

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

Colleen Young, Connect Director | @colleenyoung | Apr 6 1:59pm

Welcome, @smmontano. I moved your question to the Gynecologic Cancers Support Group here: https://connect.mayoclinic.org/group/gynecologic-cancer/

I did this so you can connect with other members talking about squamous cell carcinoma (SCC) of the vulva (vulvar cancer), like @ftwtxgirl @monafone @redd4848 @westnp1 @misstrouble @catlove30 @mdr3 @bobette1 @andwho and many others.

@smmontano, is this a new diagnosis for you? Do you have a treatment plan?

Colleen Young, Connect Director | @colleenyoung | Apr 6 2:00pm

Also see this related discussion:
- Squamous Cell Vulvar Cancer: Who out there has this cancer? https://connect.mayoclinic.org/discussion/vulvar-squamous-cell-carcinoma/

smmontano | @smmontano | Apr 6 3:18pm

In reply to @colleenyoung "Welcome, @smmontano. I moved your question to the Gynecologic Cancers Support Group here: https://connect.mayoclinic.org/group/gynecologic-cancer/ I did..." + (show)

Yes this is new for me. I had a simple partial vulvectomy on 3-20-2025 and it looks like they found a pin size amount of cancer. It was close to one of the margins so once I heal they want to cut a little more out so all the margins will be clear.

smmontano | @smmontano | Apr 6 3:19pm

Does that make sense I hope?

westnp1 | @westnp1 | Apr 7 9:29am

I had this diagnosis in 2014. It was stage 3 when I found it. Chemo and lots of radiation. They gave me a 40% chance, and I'm still here!

andwho | @andwho | Apr 7 1:01pm

In reply to @westnp1 "I had this diagnosis in 2014. It was stage 3 when I found it. Chemo and..." + (show)

I was diagnosed with vulvar cancer stage 1b in may 2023.
No surgery. I had 32 rounds of radiation & 2 rounds of chemo. They were suggesting 5 rounds of chemo but I had a hard time with it. My pet/mri comes back clear but it is always in the back of my mind that some day it could come back. However I do have lots of changes down there.
Soreness & tenderness & irritation are my side effects. If you need to ask or share anything please do!
Always great to share for support!

nelsonjm | @nelsonjm | Apr 7 4:44pm

I have a similar situation going on. You can read my post on Vaginal and anal cancer. It is scary. Stage 2b. I can say that my prayers are with you and you are not alone in this. Don't let fear keep you from enjoying your life like I have. I'm trying really hard to believe that my Cancer will be healed. You inspired me with your post, as yours has come back clear! That's awesome! This gives me hope!

westnp1 | @westnp1 | 6 days ago

In reply to @andwho "I was diagnosed with vulvar cancer stage 1b in may 2023. No surgery. I had 32..." + (show)

I had 6 rounds of chemo and about that amount of radiation. When was your cancer? Was it HPV related?

westnp1 | @westnp1 | 6 days ago

It was 3c and spread to lymph nodes. They took 7 lymph nodes from my groin during the hemivulvectomy. I have lymphedema now.

andwho | @andwho | 6 days ago

In reply to @westnp1 "I had this diagnosis in 2014. It was stage 3 when I found it. Chemo and..." + (show)

That is wonderful & encouraging for all of us to hear that battle vulvar cancer. Do you suffer with any side effects or just feeling different down there?
I have irritation & soreness.
And if you do can you suggest anything to use?
Thank you!!

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