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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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@foster14 the first doctor recommended surgery, followed up with cream. She said she had experience with this, but I don’t believe her. She’s very young and she told me twice it wasn’t cancer before the biopsy. I’m seeing a doctor Tuesday who does have experience. I got his name off of the Mayo Clinic list. I’m somewhat concerned about not being able to walk or drive after surgery. I don’t have someone to cook for me, so I will fill up my fridge or order meals online. I guess I’ll clean my house really good before surgery. The area involved is next to or on the labia, and it hurts sometimes a lot. It’s better when I try to keep it dry instead of using creams, like other doctors have prescribed. Hopefully, the dr Tuesday can tell if it’s invasive. I don’t know how they do that.
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2 Reactions@bouf1948 Question is: for the doc - is the Pagets estrogen mediated? It can mean the difference between huge surgery and not.
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1 Reaction@ameliae thank you - I will ask him that. I don’t take estrogen because it caused me to have blood clots to go to both lungs.
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1 Reaction@ameliae he said estrogen had nothing to do with it / he said it was associated with a gland and in the breast too.
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1 Reaction@foster14 how painful was the surgery? Did you need help afterwards? How long were you out of commission?
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1 Reaction@foster14 did you spend the night in the hospital?
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1 Reaction@naturegirl5 I’m so confused. I saw an oncologist/gynecologist Tuesday, and he wants to do surgery to remove the area March 2nd. He said he may have to also use a laser to get clear margins. He showed me pics of the area (which I hadn’t seen), and it’s a long swath going down close to the rectum. He wants me to spend the night in the hospital, since I also have leukemia and lymphoma, and a host of other problems. The hospital gets 2 stars. He was my second opinion. He’s a long way from my house, and it’s a teaching hospital, and I had to sign forms saying students may do some of the work. Okay, back to the first opinion, she is a mile from my house, no students helping, much better rated hospital - 4 stars. She is 34 years old, and she’s a gynecologist/oncologist, but I don’t think she’s ever seen this, even though she said she had. Can I get your opinion?
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1 Reaction@bouf1948 Since you are still on the fence about surgery I'd like to suggest that you ask both physicians a few more questions.
1) For the teaching hospital where you got the second opinion, the two stars isn't necessarily indicative of the surgeon's skills but more likely the hospital as a whole. I'd ask how often he has performed this surgery. This is a better indicator of his experience with this surgery.
2) For the four-star rated hospital with the gyn/oncologist I'd ask the same question. Has she seen this before? Has she performed this surgery and if yes, how often?
Here is a website that will help you to evaluate the two hospitals. This website, Health Locator, was built by Mayo Clinic and I hope will help you figure out where you would like to go:
-- https://www.healthlocator.org/
If you'd like to read the NewsFeed on Mayo Clinic Connect about this Health Locator, here is the article:
-- https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/find-the-best-quality-hospital-fast-free-and-with-confidence/
Will you let me know if Health Locator is helpful and what you decide to do?
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1 ReactionThank you so much for your help. Can you tell me about your recovery after treatment?
@bouf1948 I believe my diagnosis was different than yours. I was diagnosed with endometrial cancer (endometroid adenocarcinoma, FIGO Grade 1, Stage 1a) 6 years ago. My treatment at the time was radical hysterectomy and so my recovery was from that surgery. I did not have any other treatment at that time. Then 2 years later I had a recurrence and so I had radiation therapy - external beam therapy and brachytherapy. I had some fatigue for about one month following radiation therapy. Since the recurrence I've been NED (no evidence of disease).
I think if you read through this Discussion you will find others who share about their own recovery from vulva surgery.
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