1. < Gynecologic Cancers

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

Posted by bobette1 @bobette1, Oct 10, 2022

Just diagnosed a week ago. Who is out there with this cancer? Looking for advise, tips and what to expect as I start my journey. TIA

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

mdr3 | @mdr3 | Aug 4, 2023
In reply to @bobette1 "I had surgery for squamous cell vovular cancer last November and then went through 6 weeks..." + (show)
@bobette1

I had surgery for squamous cell vovular cancer last November and then went through 6 weeks of chemo and radiation. My tumor was the size of a grapefruit and I'm thankful it was able to be removed but it's been quite an experience for sure. The worst part is make sure that you don't rip your stitches which is really hard to do as far as I'm concerned cuz I ended up with more scar tissue that expected which affects everything else down there. It has been 5 months since my treatment ended and it still bothers me day today as it probably will for you too because every time you sit or get up you feel it. But it is great to know my cancer is gone. So I wish you the best of luck and keep asking questions because it's not a popular cancer so a lot of people don't know about it

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You have earned your cancer free badge for sure! So glad to hear this. You are so right -- we can do all we can to raise awareness for a rather rare (5%) and likewise not talked about cancer. I know I didn't tell anybody, except you guys here, that is! Blessings to you!

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mdr3 | @mdr3 | Aug 4, 2023
In reply to @bearl "Thank you! I’m heading in for my first appointment. Guess we will develop a treatment plan..." + (show)
@bearl

Thank you! I’m heading in for my first appointment. Guess we will develop a treatment plan from here. God Bless you All!

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Let us know how you do when you can. We support you!

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bearl | @bearl | Aug 4, 2023

Good Morning! I didn’t know where to start this journey as I originally went to the Dermatologist for evaluation. The doctor recommended colorectal surgeon but the PA who did the biopsy said go to a gynecologist. So that’s where I went yesterday. He of course referred me to a gynecologist oncologist which y’all told be to go to. I’m heading in the right direction. I will keep you posted on my next visit.
My question is if this is minimally invasive is it still a lifelong process of getting surgery’s?? Can the surgery be a one and done type thing? If radiation or chemotherapy is part of the treatment plan can there be a significant remission period? I have a new awareness of this disease and I pray for all of you that have gone before me. I’m struggling but finding my way through. I appreciate the input so much!!

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bearl | @bearl | Aug 5, 2023
In reply to @mdr3 "You are so fortunate that the biopsy showed this cancer right off. Mine was negative, first..." + (show)
@mdr3

You are so fortunate that the biopsy showed this cancer right off. Mine was negative, first surgery started with the diagnosis of VINIII (i.e. even the surgeon didn't recognize it when he saw it) and it was not until the post surgery pathology that they made the diagnosis of Stage 1B vulvar cancer.l
This required a second surgery...more extensive and included bilateral lymph node dissection. My second pathology was totally negative (including the surgical site and all lymph nodes removed)
Your path will be more direct. Seeing a gyn oncologist right off the bat would be the way to go. This is a special cancer, so seeing someone who has had a lot of experience with this would be best (especially if a cancer center is nearby -- worth the trip). It will save time. The goal is to have as much information about your situation as possible going into surgery. The proper, experienced gyn oncology team will order all the screenings you will need to accomplish a good result! Feel free to reach out at any time. This is a great, supportive group, by the way. They gave me all sorts of support! (I didn't tell anyone either - lol!) When I had breast cancer I told everybody! That became my label (and still is). You can get all the support you need from your team and this group, especially at the beginning here.

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Thanks. I will need all the support I can get. I go Monday to the gynecologist oncologist to start the tests.

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2 replies
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Aug 5, 2023
In reply to @bearl "Thanks. I will need all the support I can get. I go Monday to the gynecologist..." + (show)
@bearl

Thanks. I will need all the support I can get. I go Monday to the gynecologist oncologist to start the tests.

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@bearl Oh, your appointment is only a day and half away. You got in very quickly after seeing your gynecologist and that’s great.

Will you return and let us know what you find out?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 12, 2023
In reply to @mezzojo "I started radiation treatment this week. So far so good, but I’m curious if anyone has..." + (show)
@mezzojo

I started radiation treatment this week. So far so good, but I’m curious if anyone has any suggestions for how to deal with the side effects.

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@mezzojo you might be interested in this related discussion:
- What Kind of Radiation Did You Get for Your Gynecological Cancer? https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

How are you doing?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 12, 2023
In reply to @lizbrochu "Hi there! Thanks for responding! This is a new thing thats happened, and I'm going to..." + (show)
@lizbrochu

Hi there! Thanks for responding!

This is a new thing thats happened, and I'm going to see my doc in a few days, so I'll be asking them then.
I'm assuming it's because the skin is still so new that it just breaks down far easier than normal. But It's still frightening. I was just wondering if it had happened to anyone else? The whole area is almost alien to me now, it's numb, the skin is weird feeling, and let's just say it s like I haven't hit puberty yet.

Thanks everyone for being there for us all, it's such a specific cancer, and it's nice to have others to talk to that have been through the same kind of thing.

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@lizbrochu, did you get any answers about the skin changes and what can be done?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 12, 2023
In reply to @bearl "Thanks. I will need all the support I can get. I go Monday to the gynecologist..." + (show)
@bearl

Thanks. I will need all the support I can get. I go Monday to the gynecologist oncologist to start the tests.

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@bearl how are you doing? Do you have more clarity about your diagnosis and a treatment plan now?

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1 reply
mezzojo | @mezzojo | Aug 13, 2023
In reply to @colleenyoung "@mezzojo you might be interested in this related discussion: - What Kind of Radiation Did You..." + (show)
@colleenyoung

@mezzojo you might be interested in this related discussion:
- What Kind of Radiation Did You Get for Your Gynecological Cancer? https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

How are you doing?

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Thanks for the link.

So far, things are going ok. I’m having some pain, but nothing too serious. The doctor gave me some lidocaine and aquafor to use on the sores and that helps some. I’m getting radiation in the groin as well as the vulvar area, but no pain there yet.

I’m still working almost full time. My treatments are first thing in the morning, and then I go straight into work. So far it’s been ok, but I’m not sure how much longer I can keep up this schedule. Fortunately, my work is very understanding about letting me take whatever time I need.

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betha77 | @betha77 | Aug 14, 2023

Hi, I haven't been diagnosed yet, but I have a strong feeling this is my problem, my appt with a gynecologist isn't until the end of the month; anyway; I want to arm myself with some knowledge and would like to know what are the possible treatments for Vulvar cancer are, does it include surgery, etc. Thank you in advance for your help and incite.

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