@colleenyoung Thank you for all of this great information..including the links🥰My journey ended in success, but after a painful decade of very slow steps. Chemo and radiation were not offered for this type of cancer back in the 1980s. Thank you for directing this to participants who are just beginning their CURE..hopefully they’ll share it with their local physicians, and these protocols can be incorporated rapidly. 👏🏻

@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.

@colleenyoung thank you so very, very very much for replying to me. I apologize for the delay. I’m trying to get someone to do chemo or radiology on me rather than do a full TOTAL ectomy and take out my lymph nodes in this surgery. I’m terrified that I won’t live through the surgery and even more terrified that I won’t live through the Recovery. I was hoping I’m praying there was a way to have proton radiation or chemo. Are the other sort of radiation that could be done. They ar VIN 1 & 2 precancerous they said and 1 small squamous on entry of vulva. Has anyone had chemo or radiation or proton radiation for this? I would love to hear please your journey for you. I am praying Mayo Clinic will use chemo. The gynecologist surgeon saying she has to do a total vulvectomy and then to the plastic surgery and then telling me one month and skilled nursing facility and I have neuropathy and diabetes, and not sure how this big surgery would even be possible for me. Thank you so very very much for your help and for being there. There’s nobody out there for this surgery. Nobody knows what I’m talking about. God bless every single one of you.any prayers.