Vulvar Cancer: Anyone else?

@buffalogal, I too, struggled with telling my two adult sons. I think it was because I didn’t want to believe my diagnosis, invasive Paget’s disease of the vulva. I did tell them as I felt they needed to know. They were initially upset, rightly so. But they have been very supportive and help where they can. I share as much detail as they are willing to hear. Sometimes, they tell me, Mom, I don’t need to hear this and that is fine. I understand.

I do have a brother who has listened to every detail. People are different. In the end, telling people helps me deal with everything that is happening .

I had a radical vulvectomy in September. The vulva and clitoris were removed along with sentinel lymph nodes on both sides of my groin. I am fortunate that I don’t need to have radiation or chemotherapy at this time.

@kate14 Sorry to learn of your situation. I’m in therapy currently. It helps to talk about my frustration and being unlucky enough to have this horrible health challenge. I also discuss with a longtime best friend. She’s pretty good at listening and understanding my frustrations. Hope you find the right outlet.

@teedee66 I was diagnosed early April. Had surgery in June. Right radical vulvectomy, left wide local excision of the vulva, and partial bilateral vaginectomy. Many biopsies under anesthesia and two weeks later the "big one". I feel I have a great surgeon. Young and conservative. May need more treatment later because a little cancer remains. She wanted to preserve nodes and urethra. I'm older and looked at quality of life issues.

It's painful and a challenge to heal. Tear, infection. Lack of emotional support. To whom does one talk about vulvar cancer?

@colleenyoung thank you so very much for your replies. They want to do a full removal of my vulva and removed my lymph nodes surgically and the Plastic Surgeon will take 8 inches off the top of my thigh and 8 inches on the inside of my thigh muscle and then reconstruct a hole in there along with I’m hoping save my Eureka and my recto area. And then I would be 30 to 45 days in skilled nursing with an epidural and unable to do any kind of sitting at all ever until it heals, they said they were standing up, of course, for whatever to avoid Blood class I guess and then I will have to go on our anesthesia to change the Band-Aids. I was hoping and praying and I asked both of the surgeons two and three times if there wasn’t a way that we could shrink these before trying to take my entire and area out like this. I just kept thinking there’s got to be a way to shrink these things and I know in St. Louis is 2 to 3 proton radiation machines here and have heard in the last 10 years how great they are and just was hoping and praying there was a miracle somewhere to get these things smaller and not have to take everything out like this I am 73 and have very bad neuropathy diagnosed 12 years ago with that and having using Rollator and Walker and Cane‘s and getting around and loving life I just was diagnosed a year ago with diabetes and I really really really am worried that I may not make it through this five or more our surgery they said, and then the recovery part has me very fearful. Do you know anyone I can talk to there at the Mayo Clinic and or how I get an appointment to talk to someone, please and hopefully pray that they could have some answers for me besides the words “No”. God bless you all thank you so much for sharing with me. I feel so lost and helpless, and you are giving me. Hope no one has ever heard of this.

@kate14 How terrible for you to have to go through this and to deal with the trauma. When I had my diagnosis (basal cell carcinoma of the vulva) and surgery (partial vulvectomy), I talked with people I trusted who did listen to me. That's important for you, too. For whatever reason, I never cried about this--just dealt with it as it came. Healing is a long, slow process, both physically and mentally. Talking with someone you trust is vital. If you can't find that person, then talk or write to yourself. When I was dealing with breast cancer, I wrote emails to myself to express my concerns and my depression. We don't have any local groups to help with this unmentionable subject, do we? Write it down, think about it, feel it and soak it up like a sponge. We are still alive and have whatever time we have to find small pieces of life to enjoy and appreciate.

@teedee66 I was diagnosed early April. Had surgery in June. Right radical vulvectomy, left wide local excision of the vulva, and partial bilateral vaginectomy. Many biopsies under anesthesia and two weeks later the "big one". I feel I have a great surgeon. Young and conservative. May need more treatment later because a little cancer remains. She wanted to preserve nodes and urethra. I'm older and looked at quality of life issues.

It's painful and a challenge to heal. Tear, infection. Lack of emotional support. To whom does one talk about vulvar cancer?

@kate14 My partner was just diagnosed with vulvar cancer (from lichen) Her oncologist surgically removed and reconstructed. We thought everything was fine but now he says lymph nodes should be removed. Not sure why… after he initially said surgery was a success!
Love your Doctor’s approach. Anywhere near CA? Also, did you have a lot of imaging?? Very concerned our gyno oncologist has not ordered any… no CT, PET, MRI … seems odd.

@naturegirl5 hi thank you so very very much for your response for me. I was so glad to see your response. Yes I am located and working with Barnes, Jewish hospital school of advanced medicine where they have training students, and then we have three excitement centers here in Missouri. I went to my old gynecologist seeing if she could refer me to excitement center since it’s not associated with Barnes, Jewish school of Advanced Medicine. I was hoping maybe they would consider at the site Center chemo or radiation or proton radiation. They do have proton radiation in St. Louis, which is why I keep pushing and saying that we’re thinking maybe we can do something like that without the full eradication. Thank you so much again for your reply. Have you heard of the second opinions after offering radiation chemo or proton radiation therapy instead and shrinking some of these before they do this photo with surgery and maybe not have to do the whole eradication? Thank you again so much.