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

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gabi7604 | @gabi7604 | Jul 31 6:52pm
In reply to @vickiehane "So glad you had a pet scan BEFORE surgery! I had squamous cell cancer removed and..." + (show)
@vickiehane

So glad you had a pet scan BEFORE surgery! I had squamous cell cancer removed and multiple tumors removed. One tumor came back as cancerous and now we are trying to figure out what to do next. 1. Remove all lympnodes in groin area because the tumor was exactly in the middle, followed by 2 rounds of radiation. Risk factor here Lymphedema, which is painful and debilitating. 2. 2 rounds of radiation in the pelvic area and 1 round of radiation targeting the spot where the tumor was. 3. Do nothing now with a yearly follow up.
Sounds to me like you are on the right path and everything is being accessed before surgery! Good Luck!

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Hi there What is Lymphedema? And where is the tumor that came back ? I just got dx with vulva cancer and it also said lymphovascular positive

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gabi7604 | @gabi7604 | Jul 31 6:43pm

Just got my diagnosis and I’m so lost

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2 replies
brandysparks | @brandysparks | Jul 29 4:42am
In reply to @bijou68 "Hi Brandy: First: ask questions until you are satisfied. It is your right as a patient,..." + (show)
@bijou68

Hi Brandy: First: ask questions until you are satisfied. It is your right as a patient, and it is your body and you have medical assurance. Is the Dr. you are talking about an oncologist?
I think the Imiquimod will kick in. You only had a few doses so far and i think the effects are cumulative. I think 3 times a week is a good regimen for 2 months. It is what i did at the last manifestation a year ago. The first manifestations 3 years ago was really challenging because i was stold to take it every day and i was a mess with itching endlessly and burning endlessly which made my oncologist changed the protocol to 3 times a week but longer. Last year she gave me a medication to lessen the effects of Imiquimod. I can look at the name of it on my kaiser site. I don't know anything about Clobetasol. What is it for? I have a visual appointment with my gynecologist august 1. Of course, I am not looking forward to it. All i know is that my oncologist 3 years ago proposed an excision of my clitoris but found out Imiquimod was another option. After that with so far a total of 10 different spots in all areas of the vulva, she said that it would be too many spots to excise. So honestly i try to forget i have this strange condition but keep on top of the treatments, the check up appointments etc... If on August the gynecologist who caught all 10 spots, spots again some more manifestation then i will be at a loss. I am keeping you in my prayers and please stay in touch. Brigitte

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@bijou68 - Hi! Clobetasol is to manage the Lichen Sclerosus that can (& has, in my several cases) lead to Vulvar Intraepithelial Neoplasia (VIN), which is a precancerous condition that can lead to the Squamous Cell Vulvar Cancer.

I am still applying the Imiquimod cream 3x/wk, and the Clobetasol on the other days to hopefully manage/abate any further VIN developments. Though the way it has gone this year, "out of the blue" after 40+ years of watching my skin condition, I am told it will need to be checked every 6 months for the rest of my life. That is fine, if that is what it takes.

I still have no burning from the Imiquimod, and my oncologist says that is OK - with all the caution I'd received about it burning, it worries me that it is really being effective. But I will find out when I return for the 2-month check w/the oncologist in early Sept.

I am not suggesting this, but having had the direction from the oncologist to have the laser ablation (that was the 1st surgical procedure I've had for this, it was in Feb. this year), I wonder if that is an option in your circumstance, rather than the excision being the only option for each spot?

Again, not suggesting it, but maybe worth inquiring about? And can you get to a gynecological oncologist for further insight if you haven't yet?

Best wishes, and let me know.

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1 reply
vickiehane | @vickiehane | Jul 28 12:27am
In reply to @colleenyoung "@vickiehane, I hope @ljchicago will see your question about whether or not she had lymph nodes..." + (show)
@colleenyoung

@vickiehane, I hope @ljchicago will see your question about whether or not she had lymph nodes removed as well.

Vickie, have you decided which course of treatment to get?

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Not yet. I have some testing coming up and hopefully I'll know more when I get the results.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 26 6:44pm
In reply to @vickiehane "So glad you had a pet scan BEFORE surgery! I had squamous cell cancer removed and..." + (show)
@vickiehane

So glad you had a pet scan BEFORE surgery! I had squamous cell cancer removed and multiple tumors removed. One tumor came back as cancerous and now we are trying to figure out what to do next. 1. Remove all lympnodes in groin area because the tumor was exactly in the middle, followed by 2 rounds of radiation. Risk factor here Lymphedema, which is painful and debilitating. 2. 2 rounds of radiation in the pelvic area and 1 round of radiation targeting the spot where the tumor was. 3. Do nothing now with a yearly follow up.
Sounds to me like you are on the right path and everything is being accessed before surgery! Good Luck!

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@vickiehane, I hope @ljchicago will see your question about whether or not she had lymph nodes removed as well.

Vickie, have you decided which course of treatment to get?

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1 reply
vickiehane | @vickiehane | Jul 20 9:48am
In reply to @ljchicago "I have had twice in 14 months. 2 vulvectomies...first "simple" is ironically more involved a painful..." + (show)
@ljchicago

I have had twice in 14 months. 2 vulvectomies...first "simple" is ironically more involved a painful and that was my first one. I was so scared to have a 2nd one year later, but the area was caught sooner and was much smaller. I was back to teaching AND bartending in a week. This is easier to fix than some squamous diagnoses. I was so scared. I previously dealt with endometriosis and then cervical then most recently the vulva. Today, they decided a few bleeding episodes 1+ post an early menopause was cause to do biopsy on uterus/endometrium. I feel for you. I wish it was an area like my finger or knee that everyone would love to hear about. It's such a private area and hard to speak with anyone other than my doctor and apparently complete strangers right now. If you'd like to reach out, feel free to let me know and I can contact you somehow without posting here?? Not sure how. But I could use a support group and have yet to find one in my area that deals with this. Anyway, thanks for "listening" 🙂 Trying to keep the smile and the faith - Army Brat/KC

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Hi, Thanks for sharing your story. I have a question about Lymph nodes, did you have any removed?

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vickiehane | @vickiehane | Jul 18 1:21pm
In reply to @naturegirl5 "Thank you @ljchicago for sharing your experiences with @bobette1 I agree that some cancers seem to..." + (show)
@naturegirl5

Thank you @ljchicago for sharing your experiences with @bobette1 I agree that some cancers seem to get more "press". Since @bobette1 started this discussion I have been reading about vulvar cancer and learned that while it isn't as frequent as breast cancer or uterine cancer it's not extremely rare either. I had a gynecological exam with a nurse practitioner earlier this year who asked if I wanted to see what she saw. This was the external part of the exam. When I said "yes" she handed me a mirror and educated me on what she was looking at and what I should look for. I wish that this type of education would happen for all of us women when we get these exams.

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Wow! That is amazing! So glad you were educated in what you were looking at. I was shocked the first time I looked after surgery. Was told that it would look very different, but it was very shocking!

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vickiehane | @vickiehane | Jul 18 1:15pm
In reply to @bobette1 "Oncologist appt went as expected. PET scan is Tuesday and if all goes well surgery will..." + (show)
@bobette1

Oncologist appt went as expected. PET scan is Tuesday and if all goes well surgery will be scheduled.thank you for asking.

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So glad you had a pet scan BEFORE surgery! I had squamous cell cancer removed and multiple tumors removed. One tumor came back as cancerous and now we are trying to figure out what to do next. 1. Remove all lympnodes in groin area because the tumor was exactly in the middle, followed by 2 rounds of radiation. Risk factor here Lymphedema, which is painful and debilitating. 2. 2 rounds of radiation in the pelvic area and 1 round of radiation targeting the spot where the tumor was. 3. Do nothing now with a yearly follow up.
Sounds to me like you are on the right path and everything is being accessed before surgery! Good Luck!

REPLY
2 replies
vickiehane | @vickiehane | Jul 18 12:49pm

My doctor would like to remove all of the lymph nodes in my groin area. My concern is if all lymphnodes have been removed there is a chance of Lymphedema. None were removed at the time of surgery because he didn't know I had a cancerous tumor until the pathologist report came back. The tumor was right in the middle 1 mm from my rectum so he is proposing both sides of lymph nodes be removed. There is a 33% Chance of Lympodema if he removes all the groin Lympnodes. The risks seems to high to me because Lymphedema can be very debilitating. Extreme pain, swelling of legs, not being able to walk, painful hot spots on skin. Not to mention you need to wear custom made heavy material compression socks 365 days a year that go from your ankles to the top of your legs. Oh forgot to mention not being able to feel the top of your thighs.
He has proposed removal of all Lympnodes and 2 rounds of radiation. Or radiation, 2 rounds and one round targeting the site of where the tumor was. Or 3rd option do nothing. What do you think?

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vickiehane | @vickiehane | Jul 18 12:30pm
In reply to @brandysparks "@vickiehane - Oh, my thoughts are with you! May I ask how it was discovered you..." + (show)
@brandysparks

@vickiehane - Oh, my thoughts are with you!

May I ask how it was discovered you have squamous cell vulvar cancer? (i.e., What were the signs, was there a precancerous condition first? Lichen sclerosus, or another pre-existing condition you/your Drs were watching/tracking?)

It sounds like you (& your Drs) are doing all that is needed to keep on top of this.

Appreciate any experience you can share. Hugs.

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I thought I had a yeast infection because I was experiencing itching. My doctor prescribed an anti fungal medicine and it didn't work. Went in for an appt 2 weeks later and my primary doctor examined me and told me he thought I had Lichen sclerosis, and that I had squamous cell cancer. He prescribed Clobestal a steroid cream and told me if it hadn't healed in 3 weeks go see my dermatologist. Saw my dermatologist and he did 2 needle biopsies and 2 skin scraping biopsies. The pathologist report came back with squamous cell cancer and he referred me to an Oncologist Gynecologist for a pap smear and to check for cancer inside the vigina. The pap smear came back clear.
I had no signs of anything on January 19th at my yearly physical. It happened very quickly and mine was very aggressive.
If you have surgery ask for a Sentinel Biopsy if you happen to have any tumors.
Best of luck to you!

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