@my4gratefuls
I’m very sorry to hear you’re dealing with this and it sounds so painful. I hope your care team can find something to help with the pain because that would reduce anxiety.

Several years ago, I had uterine cancer and had a total hysterectomy. Now I have squamous cell carcinoma of the vulva, but I don’t know if it’s HPV related or not. May 8th, I had the surgery to remove the left side labial skin and the sentinel lymph nodes on both sides. Because my tumor was so close to my urethra, they could not remove as much skin as they wanted without compromising my ability to urinate normally. The margin came back negative, but that margin was less than 1 mm, which is not enough to be confident. Also, the lymph node on the left side was positive. My oncologist recommends not taking out my lymph nodes on the left side, but having half dose chemo and radiation on the vulva and lymph nodes. I am going to the James Cancer Center in Columbus, Ohio for a second opinion this week.

I’m a little nervous about not taking out the lymph nodes, but I know the chance of lymphedema increases greatly when they are removed and that chance increases more when the area is radiated. I have a big decision to make. My oncologist said the studies that show lymph node removal gets slightly better results, but that’s with using a very low-dose radiation. He says the radiation I would receive is much higher and so the results are nearly the same without the greater chance of lymphedema.
Either way, I will be receiving radiation and chemo, and I am very concerned about the side effects of the radiation on that delicate part of my body. I fear very tender skin and tightening and thickening. Does anyone have any experience about that?