Gynecologic Cancer Support Group: Women of S-Teal

I have been dx with Pagets of the vulva. Are there any women in the group with this cancer?

Yes I was diagnosed 1 year ago.

I think that I actually had it for 5 plus years. Finally got a diagnosis. Have you had surgery? It was tough for me. Emotionally draining and there is literally no support. I am seeing an ND because I will not let surgeons just keep hacking away at my Vulva!! Once was enough. Please let me know how I can support you. There doesnt seem to be many of us out there. I am only 59 and this is rough.
LRCG

So sorry you are so young and been through the surgery. I have had it a little over a year. At first I thought it was just irritation from wearing yoga pants, then decided to see GYN. BX was also sent to U of Michigan, then MD Anderson.
I did decide to go to MD because we were in TX for 2 months. I saw a great GYN oncologist. She advised me on options and told me often if excised it came back. Thus I did not go that direction. I have used the cream since last March at different doses depending upon the reaction. Am tied of the itching and burning and have a new satellite. I am scheduled for biopsies in a week along with a vulvascope. My oncologist here has spoken with mine in TX. I was also presented at Oncology GYN case review..
Yes, no one knows much, little research, few cohorts. You are younger than I and am so sorry you are struggling with this. What are you doing at this point? Anything relieve your itching and burning? Please get back when time. At least we can share some things which may help. I will let you know what I hear after the bxs.

Thank you for your response
True, pre surgery pagets was only in one place right laibia did I spell that right haha now i have still some itching there and on the left. No burning. Some times a pinching feeling. I wish I had known more I would have done the cream first. The Drs couldnt wait to get after me! I didnt have any information agh!
Currently the Dr wont give me cream without a biopsy which I dont understand they know I have pagets. I am going to another hospital Swedish in WA state for another opinion
I have been seeing a ND having vitamin C infusions, mistletoe treatments and a bunch of supplements. Seems the best I can do for now
I would be curious to know more about the cream.
Did you do hormone replacement therapy estrogen or?
Im curious I havent but am going to see a woman urologist about that and other issues also hoping she may have a referral to a gyn that’s good. Right now I dont feel like I have one of those either
Its very helpful to talk
Thank you I am grateful
LRCG

Oh and what is a vulvascope?

Good to hear. Cream: It is Imiquimode 5%. That is what they have been trying. They started that at MD Anderson. Not sure it has done much for me. I don't know how long ago you had your surgery, but until recently and still, they want to do it. Since with that there is recurrance, I am not interested at this point. As we know, little research, few trials if any, small cohorts......difficult. I have red plaque and one new area of irritation on the lower left labia close to the mucous membrane, closer to the rectum. I will know more after my surgery next week or later when the bx are back. The scope will do the whole area around the vulva and into the cervix and I think rectum. Will also know more about the whole thing after next week and will share.
What are those supplements and what research and articles are there. Did they start one at a time to see what does anything? Did you see healing? I know that Mayo does some Mohs but MD said that I could try it except they haven't published much.. My area of plaque i in the groin. So far it seems my Dr. is communicating with MD so I am glad about that. More when I know more. JMH

I think I know the instrument but not sure. Will let you know all it does. Have not had colposcopy but they must think this is a better route. We already know what I have. I will let you know if I fly to MD in spring. My Dr. there just left and went part time at LBJ which is a county hospital. She will see me there but not sure I want to go there. She has given me to a new Dr. who is in the same oncology office she was in.
Is your GYN an oncologist. Seems you should stay with that considering the disease. Truthfully, GYNs have rarely, if ever seen it and only found if BX was done. Apparently it is also found in Asian men. Interesting. Usually patients are older than you are. They just know so little of the origin because of the cells affected. I did have the CAT scans and colonoscopy because of migration but I was negative.

Sounds good I will do the same
LG