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

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?

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!

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

@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.

@bijou68 - I have 2 lesions again after laser ablation in Feb. and excision of a different spot, slightly deeper, in Apr.

2 Qs for now:
1 - I'm using Imiquimod on the 2 spots, but it sure seems it's not (& can't be, by nature) a very targeted application. PLUS, I'm to use the Clobetasol for the rest of this small "inner vulva" (my words) area. How does this all stay targeted when, basically, it is nor more than a 1-inch area? This discovery was just 10+ days ago, so I've just used the Imiquimod 4x (spsd to use it 3x/week for 2 months). Isn't it supposed to burn? I've not felt any burning yet; of course, that is 'nice', but does it mean it's not doing the job?
If this doesn't work, I have to have these 2 areas excised, and it will compromise my urethra opening, which will affect urine flow/direction. And, it will also be very painful until it heals, but I've endured that before: as long as it removes these things, it must be done.
2 - How do you work on 'lessening the intense scratching and burning'?

Thank you so much for any insights, experience, advice you can provide. I can ask (& have asked) my Dr and her nurse, but after a few Qs, I don't want to 'wear out my welcome' if you know what I mean.

Best...

@vickihane Others here have also noted that the healing from surgery of squamous cell vulvar cancer takes some time. I'm hoping some of the other members will offer their perspective to you on this.

I have not been diagnosed with squamous cell vulvar cancer so I can't really weigh on what this experience is like. I was diagnosed with endometrioid adenocarcinoma, Stage 1a, FIGO Grade 1 in 2019 and had a recurrence in 2021. So far, no evidence of disease since the recurrence and I'm feeling good.

By looking at lymph nodes does this mean that your doctor plans to remove lymph nodes and send them to pathology for examination? Or have lymph nodes already been removed and you are waiting for the results?

I have squamous cell vulvar cancer. I had surgery on June 11th. There were several 2cm tumors, one had cancer, everthing else was precancerous. The margins were clear, but by my rectum I had 1 mm margin.
The healing seems to take a really long time.
Next we are looking at lympnodes to see if the cancer has spread there.

I had a similar experience with the lymph nodes and had surgery on June 10. My doctor told me that there is no chemotherapy that is effective for that and referred me to have Proton therapy, which I understand can be used even though you have had radiation in the same area. I have been approved but cannot have it until the J-P drain is removed. Hopefully that will happen soon but I still have almost 100 cc a day drainage a day and I think it has to be 33 cc or less a day. Good luck to you.

@shirleyj1065063 Oh, my goodness. You are been through so much and are offering supports to others here. Welcome to Mayo Clinic Connect and thank you for posting here.

You are a testament to how important an excellent oncology team is to diagnosis and treatment. I get so angry when I learn about yet another denial for treatment from insurance as if we are all in this for some sort of cosmetic treatment to make lips look fuller on our face. I'm relieved to know that your oncology team follows up and pushes for your treatment recommendations. It's time consuming for them and likely different for each insurance company but they do it. For you and for their patients.

When will you start the Keytruda?

Dear Shirley: I am stunned to read all you have gone through so far! You are obviously strong and have done everything to get you to fight this surreal cancer that not even medical staff know how to treat! It is like we are guinea pigs for EMPD. Together we will stay strong. I have an August 1 visual appointment with my gynecologist. She is the one who is discovering all the spots and both sides of the vulva. My treatment so far: at each manifestation I use Imiquimod topical treatment. I have worked on lessening the intense scratching and burning. I am adding you in my prayers.