Vulva cancer

6 Posts | Page(s): 1 

Vulva cancer

by Kcacompalley on Mon Jul 17, 2017 10:03 PM

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Had surgery, now starting Radiation. Soooo many questions and so little help. Surgeon does surgery then never hear from again even though have lymphoceles that need constant Intervention Ultrasound drainage. Vulva cancer is so humiliating and painful. Trying to find someone to talk with is difficult. Lay here trying not to cry and try to make myself get up and move. Anyone else out there with vulva cancer?

RE: Vulva cancer

by rmarci on Thu Jul 20, 2017 04:08 PM

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I'm sorry you are having to go through this.  I have recurrent vulvar cancer.  3 surgeries and radiation, looking at chemo next.  This facebook group has been so comforting and helpful.  It's a closed female only group, so you can get as personal and detailed as you need with any questions. 

Group name is: 

Cervical Ovarian Vulvar All Gynecological Cancers

RE: Vulva cancer

by Kcacompalley on Thu Jul 20, 2017 06:12 PM

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Wow, 3 surgeries. Thank you for responding. Being alone in this is the hardest thing. My lymph nodes showed no spreading, so I am hoping for the radiation to keep recurrence to 0. I was told 3% chance after readiation. I am praying this is correct. My lymphocele was injected with Betadine yesterday to get it to heal. It has been 8 weeks with drainage every 2 weeks. It hurts way more than the surgical site as the lymph fluid pushes on my surgical site since the clitoris was removed. Doc also went all the way down to bone on lt hip and that is what is causing the most pain. Did the radiation in that area cause much burning? If so, how did you treat it? Did you have much trouble Walking? I have to work 3 days a week to keep my insurance. Also I no longer feel like a female. It is so mutilated down there. Can not pee without it going everywhere. You too? I am so glad to have someone out there! Thank you again and I am praying all goes well for you.

RE: Vulva cancer

by Stein on Fri Aug 11, 2017 01:33 PM

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Hi,

Just wanting to know what the Facebook page is called please.

I wish everyone speedy recovery.

RE: Vulva cancer

by Kcacompalley on Fri Aug 11, 2017 03:01 PM

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The one I found or found me is called Vulvar cancer awareness/fight like a girl. Hope that helps. I have just been typing in vulva cancer everywhere to see what comes up. Sometimes have to use gynecological, ovarian, vulva etc. karen

RE: Vulva cancer

by SarahKate on Wed Oct 25, 2017 09:16 PM

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Hi I have vulva cancer too. I have just had my second lot of surgery. The first time it got infected twice. This time I have purchased a female urination device (she wee/go girl) to help keep the urine away from the surgery site when I pee. Hope this info is of some help. Sarah
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