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

Well bending and sitting suck so I walk- 30 mins a day and more if I’m up for it. Yes to modifying. The longer I’m in radiation the more it hurts to sit , bend, stretch, ect. I ate my last dinner out today, just too painful to sit, (even with a big fluffy pillow ) and with the worst still coming. I’ve been holding off on pain meds unless I can’t stand it. I am an oil painter - landscape. With a passion for plein air :). I’ve been doing a lot of studio work since before surgery. My 4th week starts wed and I am happy I’m half way but dread the rest. I have great people at the radiation center and a great surgeon!

Welcome, @artist64. Great tips!

What type of exercising did and do you do? Did you have to modify your regular activities? And, of course, with a username like yours, I have to ask - what is your artistic medium?

@bearl, I'm checking in again. How are you doing post op?

Diagnosed, surgery for radical vulvaectomy and lymph nodes removed and radiation which I am doing now. I was not aware how much they would remove in surgery. My cancer involved a tumor in the barholins gland which was removed also. Sitz baths are wonderful during radiation . Keep exercising and hydrated thru out, helps with the freaking mental emotional roller coaster we are on. Hugs!

I had squamous cell carcinoma. 2013 radical left hemivulectomy with lymph node dissection. I'm here if you have questions.

I had a left radical hemivulectomy with 7 lymph nodes removed in 2013. Doing fine now. But I have lymphedema have they told you about that?

I had a bilateral hemivulectomy with lymph node dissection
Two nodes were + so they took 7 to be safe. Now I have lymphedema. I was stage 3 when they operated. Tons of radiation and 6 chemo tx. Just wondering if you were using HRT hormone replacement therapy?

Yes, Lichen Sclerosus is a risk factor. The first person that saw me was sure this was the diagnosis. I remember saying to her "I don't need a biopsy for this?" her response: "no. I've seen this a million times" and yes, cancer can arise in 4-5% of the cases, but it was not what I had. The minute you hear someone talk like that it should be like a neon sign, and get a second opinion. Here's hoping that you get the care you need as soon as is possible. I was angry, but soon found out that was an unproductive place to be. Wishing you the best ...

Mine is most likely from Lichen Sclerosis, which I was diagnosed with. Cancer is a known risk from Lichen Sclerosis. I am disappointed that they didn’t consider that at the beginning instead of insisting that it was Herpes.

Yes. Misdiagnosed 3 times (including at the first surgery). It was not until the complete pathology came in after the first surgery that they knew it was a cancerous lesion. I was angry as all get out when they said I had to "return to the OR" for a radical ressection and bilateral inguinal node dissection. This is a rare, and not often seen cancer in most settings. I demanded a biopsy as well, because of the pain. Mine was HPV related (at age 73 and widowed for 27 years). In the end, this worked to my advantage, as HPV related cancers tend not to spread as quickly (but had to get a second opinion at a cancer center to find that out). The good news is pathology 2nd time around was totally clean and no lymph nodes cancerous. I would say, get as much information as you can prior to surgery -- from a cancer center if possible.