1. < Gynecologic Cancers

Rare Cancer: Gynecologic Extramammary Paget's Disease

Posted by moffitt @moffitt, Sep 15, 2022

Extra Mammary Paget’s Disease - invasive cancer.
No know treatment or clinical trials.
Very rare and rarely studied.
Anyone else have it?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 31 12:36pm
In reply to @aprills "I am so sorry you have gone through so much. I have had Lichen Sclerosis for..." + (show)
@aprills

I am so sorry you have gone through so much. I have had Lichen Sclerosis for years and recently had a biopsy and was diagnosed with non-mammary paget disease of the vulva. Seeing a gynocological oncologist. He said he does not want to remove as it just comes back. I get that but frustrated with credible information on best treatment options such as the Immiquimod cream. After performing an assessment the dr. found another area that he "didn't like at all ". So now I have surgery scheduled to remove that area that was not biopsied. Very frustrated 🙁
Did you have any testing for underlying cancer?

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@aprills, I can understand your frustration. It's important to have confidence in your team and the recommended treatment. Keep asking question to understand why and to feel comfortable with the plan. There are too many "what ifs" in life.

Is getting a second opinion an option for you?

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