Vulvar Cancer: Anyone else?

I go for a yearly pap smear. I have a history of UTIs ever since I was a kid. So I'm having an issue with that right now because I have all the symptoms yet my urinalysis comes back as negative. No bacteria.
The gynecologist I had retired but my pap smear last year showed a small squamous cell on my cervix, which she was going to keep an eye on. I finally found a woman gynecologist and I am going to have that issue checked out on monday. I would really like to have all my woman parts taken out at this point for fear that it's just a matter of time before all of them get hit with cancerous cells.

I am new to this group. Two weeks ago I had a radical Vulvectomy with lymph node removal. Recovery has been slow, I’m just now getting off the pain pills. My stitches broke open the first day home so I had a lot of bleeding which is finally under control. The lymph node incisions have become very large and doctor says they are the size of softballs and will need to be drained next week. But my question is about sharing all this information with my adult children. How do any of you talk about this very personal issue? I will start radiation soon but haven’t told anyone except my husband.

Radiation was rough because it is everyday during the week. Your skin will feel like it is on fire. Was ok for first week or two. Consider it like a bad sunburn. They should give u some creams that do help. Best of luck....do u know when it starts? Are you doing chemo too?

@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?

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.

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.

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.