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

@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?

@jade2026, such challenging choices to have to make. Have you had your second opinion appointment yet? What information helped answer your questions to be able to make a decision? How are you doing?

@colleenyoung
I had my second opinion and he thought my doctor’s plan was reasonable, but wanted me to think about some other things. The cancer in my lymph nodes was 2.5 mm in size. Guideline state that if the cancer is over 2 mm, the lymph nodes should be removed. With mine being so close to that size, I am in a gray area. If the lymph nodes were removed, and there was no additional cancer found, it would be reasonable to not have radiation in that area.
Then, he said his practice is no longer recommending radiation of the vulva, especially if the margins are greater than 2 mm. I reminded him that mine is less than 1 mm and he’s still recommended no radiation. He said I would be monitored, and if I had a reoccurrence, I would be able to have further surgery. If I had radiation, further surgery is not an option. I left that appointment with my head spinning.

The next day, I saw the radiology oncologist. He felt my original doctor’s plan was a good one, but was wondering why we were not removing the lymph nodes. He brought up the guidelines and said if you strictly go by them, that’s what he would recommend. Also, he said that if the lymph nodes were removed, and no cancer was found, he would still strongly recommend radiating the lymph area. He was not in favor of not radiating the vulvar area. He explained there were in situ cancer cells less than a millimeter away from the edge of my incision. He said chances are that there were additional cells across the margin. But, I left that appointment feeling more comfortable with any decision that I made.

After considering everything, I kept going back to the original plan as my favored one. My small cancer free margin made me very concerned about not radiating the vulva. Also, I am very worried about getting lymphedema and don’t want to take out my lymph nodes if it’s not absolutely necessary.

I saw my oncologist Tuesday after he had had a chance to speak with the oncologist at the James. They came to a meeting of the minds that landed on the original plan of not removing the lymph nodes, but radiating the groin and vulva.
He explained that if we didn’t radiate the vulva and I had a reoccurrence, surgery would not be a good option. A reoccurrence would likely be near my urethra and only radical surgery could be done and that would leave me unable to urinate normally.
He did not feel that removing the lymph nodes would be of much benefit, but would greatly increase my chance of lymphedema to around 60%. I have two other risk factors for lymphedema. The first one is that I had significant swelling after the sentinel lymph nodes were removed. The second is that I have varicose veins.
I felt relief that he had not changed his ideas, and he was able to change the mind of the oncologist at the James. He explained it in a way that made me feel comfortable with this plan. It seems that this option gives me a good chance of getting rid of the cancer with less damage to my body. So, that’s what I’m going with.

Thank you so much for your comment.

@jade2026, thank you for writing all those details. You illustrate really well the anguish of decision making that patients have to go through will little or no previous medical knowledge. It's hard! But you kept asking questions, got a second opinion and coordinated the experts to speak with one and confirmed the treatment path best for you. Kudos. Having confidence in the plan is gold.

When do you start radiation?

@colleenyoung
I had my second opinion and he thought my doctor’s plan was reasonable, but wanted me to think about some other things. The cancer in my lymph nodes was 2.5 mm in size. Guideline state that if the cancer is over 2 mm, the lymph nodes should be removed. With mine being so close to that size, I am in a gray area. If the lymph nodes were removed, and there was no additional cancer found, it would be reasonable to not have radiation in that area.
Then, he said his practice is no longer recommending radiation of the vulva, especially if the margins are greater than 2 mm. I reminded him that mine is less than 1 mm and he’s still recommended no radiation. He said I would be monitored, and if I had a reoccurrence, I would be able to have further surgery. If I had radiation, further surgery is not an option. I left that appointment with my head spinning.

The next day, I saw the radiology oncologist. He felt my original doctor’s plan was a good one, but was wondering why we were not removing the lymph nodes. He brought up the guidelines and said if you strictly go by them, that’s what he would recommend. Also, he said that if the lymph nodes were removed, and no cancer was found, he would still strongly recommend radiating the lymph area. He was not in favor of not radiating the vulvar area. He explained there were in situ cancer cells less than a millimeter away from the edge of my incision. He said chances are that there were additional cells across the margin. But, I left that appointment feeling more comfortable with any decision that I made.

After considering everything, I kept going back to the original plan as my favored one. My small cancer free margin made me very concerned about not radiating the vulva. Also, I am very worried about getting lymphedema and don’t want to take out my lymph nodes if it’s not absolutely necessary.

I saw my oncologist Tuesday after he had had a chance to speak with the oncologist at the James. They came to a meeting of the minds that landed on the original plan of not removing the lymph nodes, but radiating the groin and vulva.
He explained that if we didn’t radiate the vulva and I had a reoccurrence, surgery would not be a good option. A reoccurrence would likely be near my urethra and only radical surgery could be done and that would leave me unable to urinate normally.
He did not feel that removing the lymph nodes would be of much benefit, but would greatly increase my chance of lymphedema to around 60%. I have two other risk factors for lymphedema. The first one is that I had significant swelling after the sentinel lymph nodes were removed. The second is that I have varicose veins.
I felt relief that he had not changed his ideas, and he was able to change the mind of the oncologist at the James. He explained it in a way that made me feel comfortable with this plan. It seems that this option gives me a good chance of getting rid of the cancer with less damage to my body. So, that’s what I’m going with.

Thank you so much for your comment.

@jade2026 Oh, my! That's a lot of back and forth with recommendations and decision making. It's a tough call with the considerations of removing cancer cells - as much as possible - and leave you with the least possibility of recurrence and good quality of life. It's so important that you were persistent and kept on with the questions. In this way, you were able to come to the best decision for you with the advice of your doctors.

Thank you so much for sharing your process of decision-making.

When will you start treatment?

@colleenyoung
I am doing better. Thank you for asking. I told myself that I will not let fear of the unknown consume my thoughts. How are you?

@naturegirl5 I hope I’ve made the right decisions. I start radiation and chemo on June 29. Thank you.

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