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invasive extramammary pagets disease
motherof6 posted:
I am from New Zealand and have found this site. I too have invasive extramammary pagets of the vulva diagonised in Fed this year. I have already had 3 operations to remove the recurrance pagets, but unfortunately mine had cancer cells that had invaded deeper than the 1mm safety margin.

It is so good to finally find people who have this disease. As NZ is a small country there are not alot of doctors here that have even seen anyone with is disease, which doesnt help me much.

I have had 22 groin lymph nodes removed 12 from each side as well as half my vulvar removed. 3 ops later and it is getting extremely uncomfortable. I cant wait to be able to sit properly and get rid of the pain in my legs from the lymphodema I now have.

It has only been 2 weeks since my last op and it has already returned. My doc is away on holiday so he doesnt even know it is back yet until I see him on the 1st of Nov.

I have done heaps of research and have found alot of information, but sometimes it doesnt pay to read as the outcome of invasive in not good. I am only 45 and am definately not ready to give up just yet. Everytime I have an operation they tell me that they have got it, but within 2-3 weeks its back again.

Anyway thanks for listening to me bleet on, but it is good to get it out.
Arizonasmiles responded:
Denise - hugs to you! I hope you have some success. I opted to do the cream first, but it is no my last option. There are some things they do in Europe, particularly Germany and Switzerland, that they don't do here including superheating or local areas of the body to attack tumors. Keep returning to this sight, but go to the EMPD page to post so thatno one will miss you. You are number 4 of our group. In order to help doctors get to the cause, we need to see what we all may have in common. There has never been a study about that, only about what treatment works.

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