Vulvar Cancer: Anyone else?

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 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.

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.

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.

@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?

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, 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/

@debramcrae, there seems to have been a small stroke of luck involved in your story, although I bet it didn't feel like that at the time. Do you continue to be monitored every 6 months or yearly? What follow-up testing do you have, if any?

Hi, I had radiation therapy after chemo for vulvar cancer. You might want to check with your doctors about starting radiation treatment with an infection. They might want to wait until you have finished with the antibiotics and no more infection. Believe me, the slight delay will be worth it! Radiation can affect your white blood counts, so better safe than sorry. A few pieces of advise that I wish I had been given -
you will be tired so listen to your body,
if you can, have someone drive you to treatment, even if you think you can do it
Before you start, go out and buy “boy short” underwear in 1 size larger, you’ll be much more comfortable
Ask your radiologist about cream to use, in case you develop burns (like a sunburn)
I am more than happy to answer questions, if you have them. Let us know what the doctors say. You’ve got this!

Hi I had a cyst removed from my right side of vulver
I had this for about 5 years and thought nothing of it I went to a gynecologist to get a IUD removed and he saw it and said he would book me in for surgery remove the cyst and replace IUD waited 24 hours and found out that was stage 3 going on stage 4 cancer I panicked, I went back to gynecologist 2 weeks later removed sutures and was told he was confident got all the cancer when he removed lump that I thought was a cyst 6 months later tested site again no cancer cells found them back 6 months later all clear.