Has anyone had Paget's disease of the vulva?

As I have been sharing info about Paget's of vulva in private messaging with another member, I have realized that there is so much I have learned over nearly 10 years and 6 vulva surgeries that I would like to share with anyone with a gynecological cancer. So here goes:
1. Do not be timid or ashamed. I would gladly share everything I know with anyone who would listen. If people are unaware, especially medical folks, you have to educate them, & be your own advocate. Always take someone with you to appointments if you can & take notes & ask questions! And do your own research! We are blessed to be living in the age of the internet. Use it.
2. There is a medication called imiquimod cream to use in lieu of vulva surgery for Paget's, for those who opt to not have surgery. Some folks have had good luck with that. I tried it for awhile & found it to be difficult to tolerate: burning & itching. But I might consider it again when I'm told I need another surgery.
3. Paget's vulva surgery is not a "once & done" surgery like appendix removal. For no rhyme or reason, it continues to return. So consider carefully the big picture of how your choices effect the quality of your remaining years. The profile for getting Paget's cancer is white, 65-75 yr, female. Always exceptions, of course.
For example, a male oncologist wanted to perform a "radical" vulvectomy, which included removing my clitoris, & he could "reconstruct" that for me if I wanted. I sought a 2nd opinion. I know it is just a body part, and if I thought it would save my life, I suppose I would consent, but this surgery is already mutilating, & so I prefer to keep as much of my body in tact while I can. And there are no studies I a have found that support any more success in eliminating Paget's with a radical rather than a partial or even a simple vulvectomy. I don't regret that decision.
Thanks for listening. Hope some of this is relevant to someone.

I was diagnosed with invasive Paget’s disease of the vulva about a month ago. I had a radical vulvectomy and sentinel lymph nodes removed from both the right and left sides one week ago. I’ve had a very rough week.
I came to this forum to see if anyone else has had this and am glad I did as I see several posters.
I am seeing a gynecologic oncologist who has been practicing for 20 years and feel comfortable with him.
It does me good to know there are other women out there with the same disease.
Chaka67 thank you for your openness and honesty.

So glad that you "found" me and others who have this bizarre & rare disease. Ten years ago I was desperate to find anyone who shared Paget's and could find no one. So I made decisions on my own using my research and "a wing & a prayer" , as they say.
You truly have been through a tough time. I know you are hurting physically & most likely emotionally. Please feel free to share with me/us any time about any feelings, thoughts, or anything you learn along the way whenever you choose.
I am so glad that you have a dr you trust. Initially that was part of my problem. I saw one dr, changed to a 2nd dr & had surgery with him, then changed to a third who has been professional, honest about my diagnosis (I think), and followed my lead in care. So important.
Take good care of yourself.

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.

Thank you so very much for sharing. I know it isn’t easy to talk with complete strangers about this disease. I feel very blessed to be in an area with a top notch Cancer center and to have a doctor who is a specialist. My Pagets is invasive and I was onboard with the surgeon to remove all that was present, including sentinel lymph nodes in both sides of my groin. The surgery is not easy, but he was able to get clear margins with no skin grafts.
I have a post op appointment tomorrow (I might be able to have the drains removed!).
I do have someone to help me at home; preparing meals, cleaning, so that is a huge help to me. I commend you for being able to take care of yourself alone. I know that is tough.
Thank you again for your input! I hope you can find some relief from the pain soon.

Was it non-invasive (did you know about it?) for a long time? I couldn't even remember the term for skin grafts as it is so awful - so huge - if I were to go that route. Also --- so wherever you are, the surgeon knows about it and is even a specialist! I'm envious 😉 Though my surgeons are good, I don't think they have experience with it.. .

I started having symptoms in late April of this year. My GP thought it might be a bacterial infection and treated with a 10 day course of antibiotics. When that didn’t help she referred me to a gynecologist. It took 9 weeks to get an appointment! He did a biopsy and it cam back invasive Pagets. He then referred me to a gynecologic oncologist and I saw him within a week. I then had 2 more biopsies from different areas and all showed invasive Pagets. I was scheduled for surgery 3 weeks later. A long way of saying I have had it for approximately 6 months total.
It hasn’t spread, that they can see, to the bladder, colon or kidneys. I will need to have a colonoscopy and other tests to see if it is inside any of those organs. I have had regular colonoscopies for years and nothing has ever shown up. I’m 67.

I had my drains removed and the stitches out on Thursday. I do have less pain and a bit more mobility, so I am feeling better. I have an appointment the first week of October to discuss what comes next. Because there are lymph nodes involved, radiation is a given. I won’t know anything further until my next appointment.
I hope you ladies are doing well.

Relief to have drains gone. I had them with my mastectomy. Could enjoy my shower afterward. Simple joys help.
Doesn’t remove pain & anxiety though, but you sound relatively calm. I applaud you.
Could be dumb question, but what will they radiate? You had clear margins, I believe, & Paget’s skin removed in surgery. Did lymph nodes indicate metastic location? Fortunately for me, after 10 years, I seem breast cancer free. I go to oncologist on October 10 after my last vulva surgery on May 2. No clear margins then. Not sure what comes next. Going to try using Aldara cream again. Not up for more surgery this soon.
Take care. I’m trying to enjoy each day, especially the lovely Fall weather here in Southern US.
BTW: Ignore any questions that you don’t wish to share. I wish you all the best.

I have positive lymph node involvement on one side of my groin for sure. Waiting on pathology report to see if the other side is involved as well. Due to this, the surgeon indicated radiation would need to happen. How much and how often is yet to be determined. I am, for the most part, calm. I can’t not have Pagets so I am doing whatever is necessary to get rid of what I do have.
Thank you for your good wishes.