Vulvar Cancer: Anyone else?

@caddo, here are a number of discussions about radiation and vulvar cancer and pelvic radation: https://connect.mayoclinic.org/group/gynecologic-cancer/?search=radiation&index=discussions

Here's a general discussion you may wish to join:
- What Kind of Radiation Did You Get for Your Gynecological Cancer?
https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

Thank you so much. It is so hard to know what to do. I will be 86 years old but have always been very active, doing Pilates, etc., up to the time the cancer was diagnosed. The radiologist started out saying that he realizes that all 85 year old, are not the same physically but……. which makes it difficult to make a decision on what to do. Since there aren’t very many women who have gone through this it is not so easy to find personal journeys.

@caddo From what I understand vulvar cancer is not all that common. Yet, there is a posting almost every day in this Discussion including yourself. It’s a very personal diagnosis as you said. I’m a cancer survivor (endometrial cancer) and while that cancer occurs more often I find it very personal also.

I’m glad you found us here at Mayo Clinic Connect and that you are connecting and being supported by this group. Nope, not every 85-year-old person is the same. My father lived to 93-years old and at your age he was still walking 9 holes at the golf course. It wasn’t until he was 90 years old that he reluctantly decided it was time to use a golf cart so he could continue to play.

As I said above, I know you will get support here. When do you next see the radiation oncologist?

On November 30, but I think I will reschedule it to the next week because I have an appointment on December 1 with the lymph node surgeon who told me at the November 14 appointment that the vulvar surgery wound was not healed enough for radiation. It is very weird. When I saw the tumor surgeon on November 8 she told me to make an appointment with her in 3 months and then referred me to the radiation oncologist. She also told me to see the lymph node surgeon because she thought there was lymph fluid accumulation. It was actually caused by an infection, which the tumor surgeon had recognized and had prescribed an antibiotic. The lymph node surgeon was extremely surprised that the tumor surgeon did not want to see me for 3 months. She told me not to worry, that she would take care of me, and she has. I appreciate the input you have given me.

Hi,

I had an excisional biopsy on 11/2/23 and it took a week to get the results back and it is not cancer. I was diagnosed with lichen sclerosus back in 2021. The area biopsied was pretty large. The area started to get infected so I have had to take some antibiotics. The healing time is about four weeks and I am in week three. I saw my gyno back in March 2023 about this lesion and she did not seem concerned but when I went back in October 2023, she was. I heard a saying that the vulva is like the small town everyone goes through to get to the big city but never stops to visit. I think I will find a doctor who is more attuned to the treatment of Lichen sclerosus. I did not realize that the risk of vulvar cancer increases if one has this condition.

I to had(have) Lichen sclerosus for a few years B4 I was diagnosed with stage 3 Vulvar cancer. I had surgery last November followed by 6 weeks of radiation and chemo. I am still healing. I am glad to know I am not alone but sad to know others are suffering too.

I also was diagnosed with lichen sclerosis a few years ago but do not remember the doctor telling me, if she did, about the vulvar cancer risk. She moved her office too far for me to go and I did not try to find another gynecologist. When you are 80+ years old, you are told you are too old for mammograms, colonoscopies, etc., and it is not easy to find a gynecologist who will take you as a patient. I now have Stage 3 vulvar cancer and 6 weeks of radiation is recommended. What was your experience with the radiation?

I was diagnosed with Vulvar cancer in 2021. I had surgery to have partial vulva cut out. Luckily I didn't have to do radiation or chemotherapy. I was in and out of the hospital that day, I didn't have one minute of pain.

My gynecologist diagnosed me but no longer took part in the surgical area of his field. I went to Moffitt in Tampa to have a partial vulvectomy. I had no issues with the surgery. I had absolutely no pain after the surgery.

@ahartmarblhd Thank you for posting here and letting others knows of your experience. It’s wonderful that your surgery went well and you haven’t needed any other treatment. Do you go back to your gynecologist for regular cancer surveillance exams? If yes, how often?