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Vulvar Cancer: Anyone else?
Hello:
I have posted on other discussion group about my struggle with my health, previous cancer stories and concerns for my genetic history. I can’t seem to get a break. I just had a biopsy today to rule out vulvar cancer. I honestly didn’t even know there was such a thing. Has anyone been diagnosed with this and is it more common than what I have been reading?
I am BRCA2 and MSH6 positive. 2 time breast cancer and ovarian cancer survivor I have lived a drug and alcohol free life it just doesn’t end!
Alice
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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?
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1 Reaction@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.
Hi am 42 years and I was diagnosed with valvur cancer 2 months ago now I am worried its a first time hearing about this type of cancer especially in my country I have never heared anyone with this I don't know how to deal with this currently I am unemployed and the public hospitals are taking forever to start treatment when I was diagnosed this wound was too small now it's growing big and it is watery still on the waiting list to start my treatment of which I am not even sure what to expect.
Linda, my heart goes out to you. It sounds like the doctors and surgeons aren’t giving you time to think, let alone breathe and adjust to this “new normal”. I was diagnosed with vulvar cancer in April 2018. My oncologist/ gynecologist recommended chemo then radiation first. I was 57 when I was diagnosed and he did not want to do surgery first leaving me with using a bag, I think it’s called a urostomy. I did have chemo and radiation first.
I 100% agree with Helen, get a second opinion. Check out Mayo, which is incredible. Make sure you see an oncologist/gynecologist. These doctors only see women who are going through what we are going through.
I did have a partial vulvectomy in September 2019 because we thought the cancer came back, but it was only scar tissue, but my doctor was extra cautious and did the surgery.
I know what you’re going through is overwhelming. Please make sure to take care of yourself. A second opinion never hurts, either. The best of everything and let us know what you decide. Peace
@leratom
Hi. Perhaps the doctors think you are in early stage cancer. They need to determine the composition of the lesion/ mass and determine staging before treatment. If you feel it’s not going well with those doctors please seek a second opinion if you are able to do this. I was lucky my mass was in Stage 1B so no chemo or radiation needed, just surgery. There are websites at Cleveland Clinic, Mayo Clinic, Northwestern and Kettering Sloan which provide more info.
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1 Reaction@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?
@pele13 nowhere near California. I had a Pat scan.
@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.
@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.