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@westnp1 @redd4848 @ftwtxgirl and everyone else following this discussion, I want to also let you know about the monthly Zoom support group for women with gynecological cancers. It is facilitiated by a Mayo Clinic oncology social worker every 2nd Monday of each month from 5:30 p.m. – 6:30 p.m. Eastern time. The next meeting is March 13 and all are welcome. See more info here:
- GYN Support Group-Women of S-Teal Jax https://connect.mayoclinic.org/event/gyn-support-group-women-of-s-teal-jax-5/

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Replies to "@westnp1 @redd4848 @ftwtxgirl and everyone else following this discussion, I want to also let you know..."

@colleenyoung Thank you for posting this. I am trying to find support for an elderly relative suffering with Paget's Disease of the Vulva. She had a vulvectomy is 25 but the lesions weren't entirely eliminated and she is suffering so much from both returning lesions and the after effects of the surgery. Her "choice" is to use the cauterizing lotion (so painful) or just tolerate the lesions (also painful). I realize this forum is not for diagnosis but I am desperately trying to help her find a specialist who can help her find some comfort measures at the very least. Her gynecologist/oncologists just hands her the lotion and doesn't seem to understand what she is enduring. I read about Dr Cliby on this forum and wonder if she could have a telehealth consultation with him, or if he might provide referrals-- she is on the East Coast and mobility is an issue. I can't believe she has to endure this pain. Thank you.