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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 what about the lady that said she couldn’t walk, sit or drive for 4 weeks? That wasn’t true for you?
@foster14 thank you! That’s the best news I’ve heard all day! So, do you go in every so often to see if it’s come back? You’ve had how many surgeries? Did you have stitches - did you have trouble getting around?
@bouf1948
No was only in the hospital about 5 hrs start to finish. That include the 2 hrs to get signed in and having an iv put in. Since it is hard to find veins in my arm they put it in my hand. Worked great! You can ask them to numb it with lidocaine and you barely feel it.
@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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1 ReactionThank you so much for your help. Can you tell me about your recovery after treatment?
@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 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@foster14 did you spend the night in the hospital?
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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@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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