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.

bijou68 | @bijou68 | Jun 10 7:50pm

God Bless you too and keep you, in good health. Are you talking about removing the clitoris? That is what was scheduled for me three years as it was discovered that I had EMPD of the vulva as the precancer was very close to the clitoris. Then three days later my Oncologist asked me if I would take a topical cream named Imiquinod. It worked as far as wiping out the brownish spots but 2 years later, more spots so Imiquimod again and again, gone... I see my OB/GYN who spots the Paget cells... on August 1st. I have mastered the side effects I experienced the first time. It is trials and errors like with everything else. I have also reached a no suffering while being injected with Lidocaine as a pre shot and then biopsies... One has to ask for pain killer because otherwise they do the biopsies with no preparation. The shot before the biopsy is as painful as the biopsy. I have listed the protocol at one of my responses to other in same dilemma. If Kaiser does not follow my protcole then I would say no and trust me when I say that they have to oblige because pre-cancer goes into cancer and costs them a lot more than one occycodon and lidocaine cream before their lidocaine shot...

REPLY
joyceinil | @joyceinil | Jun 8 7:50pm
In reply to @ameliae "I actually saw my oncologist yesterday after a CT scan and blood tests. Not the surgeon..." + (show)
@ameliae

I actually saw my oncologist yesterday after a CT scan and blood tests. Not the surgeon or hospital where the Paget's was discovered. Gynecologist are centred at a different hospital. My oncologist has ordered a biopsy of a lymph gland in my neck, a PET scan which will apparently show signs if there is cancer. Plus an MRI. He is very concerned (as am I) about cancer not necessarily related to the Paget's. He said there's no way to know it is invasive without tests like biopsies, if I understood correctly. That blood tests aren't precise enough... anyhow - I am shaken - but so thankful not to, at 77 1/2 have gone for the horrific, very large surgery that was suggested for Paget's. I may be dealing with an entirely different beast - and will know more after the PET scan, etc.

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Thank you for sharing your experience. That is sort of what I expect to go through as well. Will see an oncologist on June 19. I am 85. I have already had my ovaries, uterus and cervix removed years ago. But I'm sure they will check on everything else. I don't think I can stand the operation I've heard about in this group. I assume you have been recently diagnosed?
Please let us know your results after the PET scan. God bless and keep you.

REPLY
ameliae | @ameliae | Jun 8 1:37pm
In reply to @joyceinil "How do you know it is not invasive? Did they test lymph nodes? I 'm hoping..." + (show)
@joyceinil

How do you know it is not invasive? Did they test lymph nodes? I 'm hoping I can get some sort of treatment like you are doing. I'm not a candidate for surgery as I am 85, on Eliquis (blood thinner) because of A-fib. Have hiatal hernia, diabetes, arthritis and many other old-age type of disorders.

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Please see reply below to @joyceinil

REPLY
ameliae | @ameliae | Jun 8 1:36pm
In reply to @joyceinil "How do you know it is not invasive? Did they test lymph nodes? I 'm hoping..." + (show)
@joyceinil

How do you know it is not invasive? Did they test lymph nodes? I 'm hoping I can get some sort of treatment like you are doing. I'm not a candidate for surgery as I am 85, on Eliquis (blood thinner) because of A-fib. Have hiatal hernia, diabetes, arthritis and many other old-age type of disorders.

Jump to this post

I actually saw my oncologist yesterday after a CT scan and blood tests. Not the surgeon or hospital where the Paget's was discovered. Gynecologist are centred at a different hospital. My oncologist has ordered a biopsy of a lymph gland in my neck, a PET scan which will apparently show signs if there is cancer. Plus an MRI. He is very concerned (as am I) about cancer not necessarily related to the Paget's. He said there's no way to know it is invasive without tests like biopsies, if I understood correctly. That blood tests aren't precise enough... anyhow - I am shaken - but so thankful not to, at 77 1/2 have gone for the horrific, very large surgery that was suggested for Paget's. I may be dealing with an entirely different beast - and will know more after the PET scan, etc.

REPLY
1 reply
joyceinil | @joyceinil | Jun 4 1:57am
In reply to @ameliae "No. I didn't try surgery. It's not unbearable. Itch and burn. Cannabis products prescribed help. The..." + (show)
@ameliae

No. I didn't try surgery. It's not unbearable. Itch and burn. Cannabis products prescribed help. The surgery would be massive including taking skin from my thighs. There has been very little experience with EMPD where I am. I suspect some people mis-diagnosed as I was for about 10 years. My life is good. I'm 77. going on 78. The idea that it just keeps coming back - I'm opting right now for quality of life. As far as I know it is not invasive. I get test results of scan next Friday.

Jump to this post

How do you know it is not invasive? Did they test lymph nodes? I 'm hoping I can get some sort of treatment like you are doing. I'm not a candidate for surgery as I am 85, on Eliquis (blood thinner) because of A-fib. Have hiatal hernia, diabetes, arthritis and many other old-age type of disorders.

REPLY
2 replies
ameliae | @ameliae | Jun 2 4:48am

No. I didn't try surgery. It's not unbearable. Itch and burn. Cannabis products prescribed help. The surgery would be massive including taking skin from my thighs. There has been very little experience with EMPD where I am. I suspect some people mis-diagnosed as I was for about 10 years. My life is good. I'm 77. going on 78. The idea that it just keeps coming back - I'm opting right now for quality of life. As far as I know it is not invasive. I get test results of scan next Friday.

REPLY
1 reply
nomikins | @nomikins | Jun 2 2:01am
In reply to @ameliae "I was diagnosed with Paget's Disease of the Vulva on April 28th, almost by accident. I..." + (show)
@ameliae

I was diagnosed with Paget's Disease of the Vulva on April 28th, almost by accident. I have had it for at least 7-8 years, followed by my GP. So few medical people know anything about it, including my GP. I was having a polyp removed in late March and a good friend (a pharmacist) suggested I ask the surgeon to biopsy my vulva. Alas! There it is. I've wrestled with it. had tests. Seen different docs and ended in the oncology/gynecology clinic with amazing women surgeons who work as a team. I've been on a roller coaster since April 28th, but now, after various tests, options presented, knowledge that margins are not clear and that it comes back in a very high percentage of cases, my age (almost 77), and I live alone - I have pretty well decided to live while I'm alive and not have the surgery. It has been slow growing. Maybe that will continue. Vaseline helps with the pain present in one spot more than others. I have an appointment with the cannabis clinic at the hospital to see how they can help with pain. I had a consult with a plastic surgeon who says he could do it --- huge areas of my thigh used ... however, he also suggested I might ask for surgery to remove the most painful areas. Next appointment with surgeon mid-October. I've done a lot of research to educate myself. It has been beyond stressful, as you know. May your healing come ... Troubling that so few medical people know about it. For that reason, I gave permission (it was mine to make)for the others the plastic surgeon brought in to see. Looking for other ways to share - and have done so with friends and on facebook ... would like to be able to do more at a hospital level or in other ways. I keep speaking of it there. Only two others have been treated for it at this hospital.

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Thank you for sharing your story. So just to clarify, you did try surgery in the past, but have now decided to do without surgery? Where are you at with things now? Hope you are healing!

REPLY
nomikins | @nomikins | Jun 2 1:10am
In reply to @bijou68 "Hi! Yes, the biopsies in that fragile and highly sensitive area are brutal. I no longer..." + (show)
@bijou68

Hi! Yes, the biopsies in that fragile and highly sensitive area are brutal. I no longer allow biopsies to be done without preparation following a discovery of spots on the vulva by either OB/GYN or oncologist, because the lidocaine shot hurts as much of biopsy itself. I asked for: oxycodon with anti nausea pill then lather my area with lidocaine 5% then I go to my appointment and they put more lidocaine gel, then lidocaine shot or shots for multiple biopsies then it goes painless. Amen! My theory is: if you don't ask and obtain a yes that they will follow, ask forcefully again. I deal with Kaiser and happy to say they oblige me. Thank goodness.

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I was able to have less pain too, by using the topical lidocaine, in conjunction with an ice pack, applied before and after each biopsy. They told me the painful part of the injection is the chemical used to limit bleeding (forgetting the name at the moment) epinephrine (? ). Not all lidocaine shots carry epinephrine. You can try asking for one without the epinephrine.

REPLY
joyceinil | @joyceinil | Jun 1 1:36am
In reply to @bijou68 "Hi! I do not know what a punch biopsy is, but when you find out, can..." + (show)
@bijou68

Hi! I do not know what a punch biopsy is, but when you find out, can you share with me? Best regards, Bijou

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I certainly will. But I'm not getting many answers these days. Couldn't be because this is such a rare disease, could it?

REPLY
bijou68 | @bijou68 | May 31 8:31am

Hi! I do not know what a punch biopsy is, but when you find out, can you share with me? Best regards, Bijou

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