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Has anyone had Paget's disease of the vulva?
I am about to have my 6th vulva surgery for Paget's of the vulva in less than 10 years. That means for about a month after surgery I cannot drive, sit or walk, & I am the my husband's caregiver.
I also had a mastectomy 10 years ago, but was told they were unrelated. Also unrelated is any support for Paget's disease. They have marches for breast cancer. Yet I have never met someone with Paget's. Even this message box underlines the word Paget's as if I am misspelling the word!!
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Click on the little envelope & then look for word "compose". It has a little pen on it, but just use the word compose.
I understand your frustration. When is your surgery scheduled? I am online now so I can answer your questions.
No pen that I can see.
Frustrating as I haven't found anyone or anywhere else that this is discussed and that someone understands.
I wish I had a five year old grandchild. I got the first part of the instructions for PM's you … but couldn't find a 'pen' an place to go for the second step. Nor (given my anxiety level) am I remembering how to get to the help center. I think I even put my reply in the wrong place. Sorry.
I wish I had a five year old grandchild. I got the first part of the instructions for PM's you ... but couldn't find a 'pen' an place to go for the second step. Nor (given my anxiety level) am I remembering how to get to the help center.
Your experience was not an easy one, either. Glad it seems to be resolved & hope it continues that way.
Paget's is a rare, puzzling disease. I compare it to planting bamboo; it keeps turning up no matter how many times you try to destroy it. So far no one seems to know why it occurs, thus no one knows how to stop it. Basically it is a skin cancer of the vulva & the obvious danger is that it will become invasive & spread. So far mine has not and it has been nearly 10 years of surgeries & monitoring. My oncologist is also excellent, but through my own research, I know we are no more ahead in understanding this disease than 10 years ago. As someone said to me a while back, "there's no money in research for Paget's". Not enough folks affected. I called Mayo Clinic a while back because they are doing a clinical trial on Paget's , but the kind woman who spoke to me assured me that they have nothing new to offer than what we are doing here. So... it is a waiting game even after 6 surgeries. Good luck to you & thanks for your empathy.
I am soo saddened to learn of your plight!! I have had surgery for ca of the vulva but never had any problems with Padgets (?I only had to have one surgery and the cancer was eliminated. Very specific margins and a very renowned doc who did surgery. I did have to have 7 inguinal lymph nodes removed which showed no involvement!
I certainly hope that there is some help for you and that this whole nightmare will end for you.
Sounds good to me. After we communicate a bit, we can share more info to communicate directly. I am outside of Atlanta.
@ameliae when you open the PM page there should be a Compose button (with a pen icon) to the right of your screen. When you click on the Compose button you will get another screen where you can fill in the screen name of the person you want to write to. Just make sure before you send that you have typed the screen name correctly so your message goes to the person you intended.
If you continue to have difficulty with PM then please go to Help Center which is just below the icons on top right of your screen.
I clicked on the envelope and it comes up blank. How do I reach the person I wish to communicate with?
Oh gosh, yes! Thank you!