1. < Gynecologic Cancers

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.

biancasmythe | @biancasmythe | May 21 8:50pm
In reply to @nomikins "I’m very interested to hear how you make out with Aldara. I have been hearing that..." + (show)
@nomikins

I’m very interested to hear how you make out with Aldara. I have been hearing that surgery is the best option, especially for those that are relatively young and healthy, because it has the best efficacy when it comes to recurrence. (The Pagets doesn’t come back as easily, supposedly.) but who knows? So you are on Aldara because no one where you are does Mohs for vulva? If you want to come to Bay Area, I can link you up with a great Mohs team!

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Please let me know about the Mohs team in the Bay area that you mentioned

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1 reply
nomikins | @nomikins | May 22 12:09am
In reply to @biancasmythe "Please let me know about the Mohs team in the Bay area that you mentioned" + (show)
@biancasmythe

Please let me know about the Mohs team in the Bay area that you mentioned

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Sure. They are part of the Stanford medical school. There is a dermatology surgery clinic and one for gynecology oncology. Among the dermatological surgeons there are ones that specialize in Mohs surgery. But maybe Mayo Clinic has the same. Worth looking into.

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joyceinil | @joyceinil | May 27 1:42am
In reply to @bijou68 "Thank you for sharing: all your observations are valuable!!! I will note the name of the..." + (show)
@bijou68

Thank you for sharing: all your observations are valuable!!! I will note the name of the RX for future use... trials and errors when it comes to soothing the skin when having an outbreak. The third time was the charm! hardly any itching or burning. I will look up the protocol as I don't remember it and that was like 3 or 4 months ago, and will get back to you. I have a protocol for numbing the very painful biopsies after 10 of them... Oxycodon: just one pill 1 hr before biopsy and lidocaine 5% both RX. Then the doctor comes in and gives about three lidocaine shots and I don't feel a thing after that... Basically as we know so far is that we don't know the outcome of this strange cancer.. May we all be blessed for a good outcome.

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Very new to this group. I am interested to hear about your protocol.
I'm thankful for your biopsy protocol after having just one! They are brutal. How long does this relief last. I had painful symptoms for over a week.
Thank you so much for helping us newbies.

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1 reply
joyceinil | @joyceinil | May 27 1:58am
In reply to @victoria15 "I should add that I am recovering nicely, and though sitting is a little uncomfortable, I..." + (show)
@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!

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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.

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1 reply
joyceinil | @joyceinil | May 27 2:11am
In reply to @janeellenmc "Good to hear because I went to MD Anderson after dx in Dec, 22. I have..." + (show)
@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
victoria15 | @victoria15 | May 27 7:30am
In reply to @joyceinil "May I ask what is your age? I'm newly dx, 84 years old, and facing these..." + (show)
@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.

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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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1 reply
victoria15 | @victoria15 | May 27 7:31am
In reply to @joyceinil "New here. May I ask what CATS refers to?" + (show)
@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.

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3 replies
Mentor
Helen, Volunteer Mentor | @naturegirl5 | May 27 8:44am
In reply to @victoria15 "I had a CT scan on my chest, abdomen, and pelvis. All clear." + (show)
@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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ameliae | @ameliae | May 27 9:25am
In reply to @victoria15 "I had a CT scan on my chest, abdomen, and pelvis. All clear." + (show)
@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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joyceinil | @joyceinil | May 27 9:53am
In reply to @victoria15 "Hi there! I am 72. I had MOH’s done, and it was done just as it..." + (show)
@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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