1. < Gynecologic Cancers
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Has anyone had Paget's disease of the vulva?

Posted by chaka67 @chaka67, Apr 18, 2023

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!!

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

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joyceinil | @joyceinil | May 28, 2024
In reply to @victoria15 "Thank you! If you are interested in the “secret” facebook board for EMPD that is filled..." + (show)
Profile picture for victoria15 @victoria15

Thank you!
If you are interested in the “secret” facebook board for EMPD that is filled with info from those who deal with EMPD, visit the website, myempd.com
It gives you the info. You need to get to the facebook group. They were instrumental in my getting the appropriate care I needed for this disease.

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I have applied t myempd.com but have not heard back yet. Thank you for the tip to join the "secret" FB board. Will definitely do that as soon as I get in. I think my request has been delayed because of the holiday (Memorial Day).

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victoria15 | @victoria15 | May 27, 2024
In reply to @joyceinil "Thank you for your reply. Your information is helpful. Hope everything is clear in June." + (show)
Profile picture for joyceinil @joyceinil

Thank you for your reply. Your information is helpful. Hope everything is clear in June.

Jump to this post

Thank you!
If you are interested in the “secret” facebook board for EMPD that is filled with info from those who deal with EMPD, visit the website, myempd.com
It gives you the info. You need to get to the facebook group. They were instrumental in my getting the appropriate care I needed for this disease.

REPLY
1 reply
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joyceinil | @joyceinil | May 27, 2024
In reply to @victoria15 "I had a CT scan on my chest, abdomen, and pelvis. All clear." + (show)
Profile picture for victoria15 @victoria15

I had a CT scan on my chest, abdomen, and pelvis. All clear.

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So glad to hear you got an "all clear". Wonderful news. God bless and keep you.

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joyceinil | @joyceinil | May 27, 2024
In reply to @victoria15 "Hi there! I am 72. I had MOH’s done, and it was done just as it..." + (show)
Profile picture for victoria15 @victoria15

Hi there!
I am 72. I had MOH’s done, and it was done just as it was on my face. I had 4 passes before I got clear margins. They used local, and it was not bad to me. I would say though the initial needle numbing sticks were the worst part. If you go to the myempd facebook group, and read their stories, you will find all different responses.

I go to see my doctor June 13, and I sure do hope it is still gone.

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Thank you for your reply. Your information is helpful. Hope everything is clear in June.

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1 reply
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ameliae | @ameliae | May 27, 2024
In reply to @victoria15 "I had a CT scan on my chest, abdomen, and pelvis. All clear." + (show)
Profile picture for victoria15 @victoria15

I had a CT scan on my chest, abdomen, and pelvis. All clear.

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I had this scan Thursday. See my oncologist in two weeks for results. Waiting is hard, as we all know. This is my oncologist from almost 20 years ago when I had surgeries and treatments for breast cancer. The surgeon/oncologist for Paget's is at a different hospital. I haven't seen her in almost a year as I got thrown by a car, broke shoulder/humerus and more - so concentrating on healing - and relieved in a way not to have to make a decision and tell the surgeon again I don't want surgery. But will someone follow me ... in that case.

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Helen, Volunteer Mentor | @naturegirl5 | May 27, 2024
In reply to @victoria15 "I had a CT scan on my chest, abdomen, and pelvis. All clear." + (show)
Profile picture for victoria15 @victoria15

I had a CT scan on my chest, abdomen, and pelvis. All clear.

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@victoria15 This is wonderful news. Congratulations! 👏👏🎶

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victoria15 | @victoria15 | May 27, 2024
In reply to @joyceinil "New here. May I ask what CATS refers to?" + (show)
Profile picture for joyceinil @joyceinil

New here. May I ask what CATS refers to?

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I had a CT scan on my chest, abdomen, and pelvis. All clear.

REPLY
3 replies
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victoria15 | @victoria15 | May 27, 2024
In reply to @joyceinil "May I ask what is your age? I'm newly dx, 84 years old, and facing these..." + (show)
Profile picture for joyceinil @joyceinil

May I ask what is your age? I'm newly dx, 84 years old, and facing these decisions. When you had Moh's surgery (I am familiar with the procedure) did they keep you anesthetized the whole time they did four stages? Or is this done with local anesthesia? My husband had MOHS on his forehead but that was a little different situation.

Jump to this post

Hi there!
I am 72. I had MOH’s done, and it was done just as it was on my face. I had 4 passes before I got clear margins. They used local, and it was not bad to me. I would say though the initial needle numbing sticks were the worst part. If you go to the myempd facebook group, and read their stories, you will find all different responses.

I go to see my doctor June 13, and I sure do hope it is still gone.

REPLY
1 reply
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joyceinil | @joyceinil | May 27, 2024
In reply to @janeellenmc "Good to hear because I went to MD Anderson after dx in Dec, 22. I have..." + (show)
Profile picture for janeellenmc @janeellenmc

Good to hear because I went to MD Anderson after dx in Dec, 22. I have ussed Imiquimod since then and as you said the itching and burning was difficult. I now have a couple of new lesions and my Oncologist just did 5 bx under general...deep and stitches. I am 5 days post and am waiting for bx results and further information. MD said surgery can be done but does not cure. I just read someone did radiation and it sounds horrible. I am in a pool of rare cancers there but no research at this time. When I first read about this they said the cause is really unknown but read someone said HPV driven, Nope...but they did do CATS, tested for it, colonoscopy, etc. All were negative except for the bx. I appreciate hearing your story. All information helps even if we don't want to hear it!!!

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New here. May I ask what CATS refers to?

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1 reply
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joyceinil | @joyceinil | May 27, 2024
In reply to @victoria15 "I should add that I am recovering nicely, and though sitting is a little uncomfortable, I..." + (show)
Profile picture for victoria15 @victoria15

I should add that I am recovering nicely, and though sitting is a little uncomfortable, I am very glad I chose Moh’s surgery rather than a partial vulvectomy!

Jump to this post

May I ask what is your age? I'm newly dx, 84 years old, and facing these decisions. When you had Moh's surgery (I am familiar with the procedure) did they keep you anesthetized the whole time they did four stages? Or is this done with local anesthesia? My husband had MOHS on his forehead but that was a little different situation.

REPLY
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