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← Return to Vulvar Cancer: Anyone else?
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@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.
Replies to "@colleenyoung thank you so very much for your replies. They want to do a full removal..."
@lindarosemanweiss
I feel I can hear the exhaustion in your voice, and am sorry such a gruelling treatment option seems the best way forward. I have early-stage vulval involvement with vaginal cancer and am aware of all the nerves, the blood supply etc all around the area, making it ultra sensitive and delicate. I wish you well.
@lindarosemanweiss You can get through this. I did not have reconstruction or lymph node removal but most everything else cut out. Keeping clean after surgery very important to avoid infection. Slow healing so you can't sit. I'm pleased you're having skilled nursing to help. I'm 82 and going home a
one day after surgery challenging.
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@lindarosemanweiss You have so many medical conditions going that adding vulvar cancer and all the decisions you need to make must be overwhelming. Getting another medical opinion seems like a good idea to me and that's what I do.
You can request an appointment from Mayo Clinic on your own by using this link. There are 3 different locations and you can designate which location you like for your request.
https://mayocl.in/1mtmR63
For Mayo Clinic, you check here if they take your insurance or you can call and ask.
Insurance types accepted at Mayo Clinic:
-- https://www.mayoclinic.org/billing-insurance/insurance/accepted-insurance
Another option is to ask your primary care provider or the surgeon you currently seeing to make a referral. I personally know it's very uncomfortable to ask a current surgeon/physician for a referral. You can explain that this is a very difficult set of decisions to make and you would like a 2nd or 3rd opinion to help you with this.
Are you located near a major academic medical center? Or are you currently seeing a surgeon at such a place?