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

Hi everyone,

I have had vulvar cancer officially 3 times with the third time being metastatic through my abdomen and chest. I've just recieved my 3 month PET scan which shows increased uptake and growth so most likely I'm on the road to a 4th diagnosis. I had genetic testing which did not show any markers so I'm not a candidate for immunotherapy and since I've had chemotherapy twice and radiation once I just don't beleive there is much they can do. Is there anyone in this group who is living with vulvar cancer or knows someone who did? I'm curious about progressive symptoms and productive palliative care.

I'm only 50, have never had HPV and have no history of cancers in my family so I'm definitely what my doctor calls a unicorn. But any assistancce on what to expect going forward would be truly helpful.

I had a VIN1 removed 4 yrs ago and have yearly checks with the GYN. This past year I have had 2 squamous cell carcinomas removed this past year. One from my nose in which they did a Mohs procedure, and one on my shoulder which was shown to be invasive squamous cell. Previously when they were removing the VIN1 , i was tested for HPV and had 3 of the high risk ones for CA. I am concerned that I am higher risk for these type of CA. The VIN1 was very obviously different looking tissue (looked like a wart) but the skin cancers I had were not recognizable to me. I am wondering what type of skin changes should I look for in the vulva area to see if i might need a sooner appt than 1x year. I have never seen a vulvar cancer and wouldnt know what to look for, that is what i am asking about. What do I look for?

@stephkleier, I’m not sure I’m following your timeline correctly. If I understand, you had 2 pre-cancerous lesions removed and will see your GYN oncologist again in a year for follow-up. But you are concerned that is too long a period to wait for follow-up given potential risk factors that you may have. Is that correct?

Are you able to schedule a consult with the doctor to discuss your risk factors and how that might influence a more frequent follow up or why that might not be necessary?

@bearl, have you had a chance to speak with your doctor and get clarification and a game plan?

I was wondering if any of you can tell me what i should be looking or feeling for to keep an eye on myself? I had a VIN 1 area on vulva that they removed with laser and one near the vaginal opening. I have a yearly appt with the gyn-onc to keep an eye on it. But the first lesions were so obviously different I could not have missed them. I am concerned because i have recently had 2 squamous cell carcinomas removed from my skin, on was invasive on shoulder and i hear this increases your risk for that type of cancer as well as having 2 or 3 of the high risk HPV markers. Any advice would be appreciated.

I had surgery on Friday. Im more confused now. My VIA lit up some areas. I don’t know what’s next. I understand the feeling of being lost and alone as the doctors play this close to the chest. Very frustrating. Just wish someone would talk about this straight forward.

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!