I was diagnosed recently with Pagets Disease of the Vulva. I had surgery (vulvectomy) about 3 weeks ago. The pathology showed some cancer. As Pagets Disease of the Vulva is rare, it is very rare that it is cancer. In speaking to my gyn oncologist and reading the internet, there is no protocol or clear handling of this situation. I went for a 2nd opinion to a doctor who actually wrote about this, and he too advised there is no clear protocol for this. One doctor wanted to remove the lymph nodes from the groin immediately while the other said the risk out ways the chance that the cancer is in the nodes. SO, do I take the chance, roll the dice, and keep the quality of my life rather than remove the nodes? Does anyone know? Aside from this dilema, the vulvectomy is the only sure way to go. There really is no alternative. I had a good surgeon that took the time to make sure I was left with something that looked normal. If not for the cancer, I would be fine. There apparently is a new cream in the testing stage to use that can hopefully prevent this from returning (because the odds is it will return).

I haven't been on in a while ~ thought I'd let you all know that after being diagnosed with extra-mammary paget's disease in Oct. of 2008, (at the age of 48) I had a vulvectomy (the cells hadn't breeched the 'walls' so lymph nodes were not involved...I was lucky) and I had my one year check up this past October, and I was 'clean'. I am still going to see my specialist every six months for the next year, and will probably go see him once a year thereafter. I think it too that first year before I felt like I could actually wash instead of splash...It was probably more of a mental block concerning the whole surgery...anyhow, I've reached a point where the thought of the cancer isn't consuming me like it did before. My husband and girls were very supportive through it all, and that helped. I can't think of the name of a book my girlfriend gave me to ready, but it was about self healing (?) Anyhow, the one thing I gained from that was that at night, when I go to bed, I totally relax my body...and visualize 'pac men' in my body (seriously!) and I send them from my mind, down through my body, and visualize them 'chomping' away at any of the cancer that may try to come back. Since the recurrence occurs along the incisions (and my incision was a total horseshoe shape) I just cut the 'pac men' loose and visualize them chomping away all along the incision while I drift off to sleep. I know it sounds weird, but it helps me mentally, and so far, so good! I hope you all are recovering well - it's not like other cancers...it isn't talked about. I'll share a funny post surgery story...I vaguely remember coming out of surgery and was in the recovery room...I remember tears falling, and saying i hurt to the nurse who said they would be getting me hooked up to an IV so I could get some pain meds...another gentleman was also rolled into the recovery bullpen...and he was going on and on, yelling about how much he was hurting (meanwhile, tears are falling silently from my eyes) The guy was upsetting me...I heard another nurse say that, yes he probably had some pain, as he had just had his gall bladder removed...My nurse was trying to move me to another area, as he could see that I was getting more upset (he was really kind and protective of me in recovery)...All I can remember thinking was that, BIG DEAL! YOUR GALLBLADDER? at least you didn't have your penis cut off!!! I was thinking it in more harsh terms...I still wonder to this day if I actually verbalized it...probably not since my throat was so raw I could hardly whisper...If I had said it, too bad no one got it on video - I could have possibly won big money on America's Funniest Video's! Well, I hope the story made you smile at least a little! My thoughts and prayers are with you all ~

Hello and so sorry you have to be here.

I belong to another group where there are several ladies with Pagets.

I have been told I have to be watched for it due to my arsenic exposure that more than likely has caused my Bowen's and SCC grade 3 of the Vulva.

You might want to check out gyngals@yahoo.com
it is private group due to the problems we all speak about. There may be some good information for you all. Oleander

Hi I am pretty new to this. I had surgery last Jan.,but it came back again. I just had surgery Sept. 24. This time is was around my clitoris. Everything seems to be ok. I do find it almost impossible to wear clothes. I bought some skirts and whenever possible I do not wear panties. Does anyone else have this problem? Sometimes I think the doctor doesn't understand what we ladies go through. Anyway I am sorry that you have this rare cancer. I hope you feel better.

I have been fighting Vulvar Pagets since 9/2000. Two surgeries and now after 7 years it's back again. I see a gyn oncologist & have an appt. 10/12. Since May of this year I have been using a topical cream 3 times a week (Aldara). My Pagets is very near the clitoris and sex is very painful. I, too, cannot stand to wear panties and do not while at home but of course do at work. I even bought larger jeans to try being comfortable. I am really down right now. We'lll see what happens on Tuesday. To all of my peers out there, this is no fun for anyone. I pray to God to give me the strength to live with this everyday.

My heart goes out to you Debbie 48. I am surprise that you can work. My job consisist of standing on my feet for 8hrs I run the front of a Supermarket and by the end of my shift all I want to do is rip my clothes off. Sex what is that? Jeans I gave up on them any pants for that matter. I have switch to skirts. At this time I am not working. Still recovering from surgery. It scares me that you have gone this long and now it's back again. You are in my prayers Please let me know how you are coping

Don't worry Lillyblossom. Pagets diesease is in most cases not cancer. I was diagnosed with pagets of the vulva 22 years ago while pregnant. I was 34 at the time and it frightened me so much. Refused to have a vulvoctomy, which is was they did then. had over the years 9 excisions (partial vulvectamies). however it is now so extensive and symptomatic that I'm afraid I need to have a total vulvoctamy. I'm so scared about that now. Did anyone have a vulvoctomy with reconstructive surgery? What is it like?

10/14/10 had 18 biopsies of the vulva all the way to the rectum. The GYN/oncologist has referred me to a plastic surgeon for reconstructive surgery. I will most likely lose my clitoris. Again, after 7 years I believed it was gone for good. I am very frightened but believe my faith in God will get me through. I'll keep everyone posted when the results come in. Debby

Hi!!!!
I am new in your forum and i m so shorry because I do not speak good English.....
I am from Grece and I suffer from vulvar pazet.I have 2 surgerys for this but now i have therapy with Aldara.I have go to a hospital in Paris and doctor saind that is the better therapy for vulver Pazet.
I regret that I do not speak English well .... if someone with the same problem is Greek let contact me .....

I am so sorry you have to go through this! By the date of your post I assume most of this is behind you know. HOpe you made a good recovery. I had a radical vulvectomy in 2008 and the Pagets Disease has returned. I tried treating it was aldara (was that the cream you were referring to?) and it seemed to slow it down but it is back. I feel fine now and just dread the idea of surgery again. I have been doing research on this disease for four years now and as you found, it is just too rare to have any good norms established. I went to the Mayo clinic cancer research center, found a book on "Uncommon Cancers" and EMPD had half a page!!

Hi everyone, I too have paget's disease. I met a woman that went thru a detox program and healed of stage 3 colon cancer w/ no chemo or radiation. I found out that they had healed one woman of paget's. I went thru the program. It is a very intense detox program. Their philosophy is that the reason for the reocorrance of the paget's is because you need to heal from the compromises that caused your body to get the disease in the first place. Aside from the lodge program you can send them your bloodwork to have it analyised. The lodge is only one week . The rest you can do at home. They can go over your bloodwork over the phone. Their website is Healthquarters.org & they can be reached at 719-593-8694. Just wanted to put it out there. It's been such a blessing to me. God bless you.

Hi is there anybody out there that has EMPD as in Pagets disease of the vulva. Feeling very alone 1 in 10 million women is an isolated place to be. Would love to hear form anyone.

Thanks

Thanks for your post lovely to meet another Pagets lady. did you investigate this lodge

Hi just reaching out found this site and really keen to catch up with how your treatment is progressing

Grace31- sent you a private message. :)