Vulvar Cancer: Anyone else?

@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?

@pele13 nowhere near California. I had a Pat scan.

@kate14
My surgeon also did a deep dive with nine additional biopsies under anesthesia two weeks before the surgery. This was to allow her time to map out the best surgical approaches.

@carointheuk thank you so very very much for your reply. I appreciate it so much. Have a suggested treatment for you with your early stage? Hopefully you can have chemo or radiation or something and not have to do this Complete eradication of and plastic surgery. I really really really worry about the Recovery and if I make it through the Recovery. And that’s if I make it through the surgery. Thank you so much for your reply.

@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.

@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.

@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 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.