Has anyone else had negative treatment from a doctor that has treated you for EMPD? The first gyn oncologist that preformed surgery treated me like I was a bother, told me I did not have cancer and found that he did not remove all the EMPD during my first surgery and told me that I was going to have some skin removed. I awoke to find that I had a Vulvectomy. I found another gyn oncologist that was much more compassionate, he sent me to a dermatologist we tried Aldara first, which didn't work and then laser treatment that also did not work. He preformed a surgery where he injected me with a dye that would light up cancer cells when in a dark room with a black light, drew around the area and did surgery beyond so he would get all the margins. I have been free of EMPD for a year and a half.

I found out a few months ago that the doctor that did my MOHS surgery is no longer at M.D. Anderson. He is still in the Houston area, but I do not know if he is or would be willing to do more MOHS surgery on any more pts with EMPD. I think it might be time for us to post the area and doctors names that we think did a good job of surgery as well as proper cancer removal. We have posted several types of treatment and lengths of return of Paget cells. I will start this list with my Pagets being in the Pari anal area with MOHS surgery done to try and move all cells that were found on slides. I was instructed to start using the Aldara cream as soon as my skin was totally healed in hopes of the cream stimulating my immune system to attack any cells that return or show up underneath. I should be visually checked every 3 months. Have biopies done when ever there is a question or concern. Most of us had a thourough check up on body parts that could have cancers in other areas. I.E. Bladder, uterus, rectum, colon etc. Has anyone had a check up on their small colon? That seems to be the hardest to check on. There is a colon video cam pill that can take pictures of the small colon, but I have not heard of any of us having that. I think insurances do not pay for this test yet. But maybe if it was explained about our condition they might. I wonder how much it woul;d cost for us to pay out of pocket. Also I noticed that most of us have not posted in a while. I'm sure with dealing with our own health and wanting to try to forget about it as much as possible posting and searching is not a priority. Most of my computer time looking for info was before I had treatment. So if that is your case too, then newbies will be reading the most. So I would like to know where you are happy with your treatment and doctor, so I will have a plan if mine returns. Selfish arn't I. :^) Thanks to you all and I wish you the best. We are a support group as well as a FORCE if we continue to be a group. take care Marilyn

I truly feel that patients that have just received their new diagnoses should seek a second opinion. I wish I had. I think I was so overwhelmed with the diagnoses that I just did whatever this doctor told me to do, and also as I was sitting in the doc’s waiting room, I would listen to stories about how this oncologist was their last hope, they had come from different states to see him. I felt as if he didn’t think my disease was as important as his other patients. (Thanks for listening) That first Doctor was Dr. David Moore in Indianapolis, IN. The second doctor that I felt did an awesome job was Dr. Gregory Sutton in Indianapolis, IN. He sent me FIRST to Dr. Hankee a laser skin and surgical doctor to try alternative treatments. We first tried the Aldrea cream, which had no effect at all. The second treatment was Photodynamic Therapy. I received 2 treatments with no results. The funny thing about going to this office, they didn’t even know they had stirups on their exam tables. I then went back to Dr. Sutton, he performed surgery with intravenous dye to see where the cancer outline was and then he went outside the margin. I have been EMPD free for 2 years. I go annually for exams. I hope this information is helpful to others

Has anyone called or used a doc at the Mayo Clinic?