Extramammary Paget's disease is a non-invasive cancer of the skin in areas rich in apocrine glands such as the genital region.
Dianekm, Glad you had successful surgery. Dr Sutton will have your pathology report and will give you instructions on your course of action. I am confident that he did the same surgery for you that he did for me, where he injects you with a dye and takes you in a dark room and draws around the area that lights up. I had clean margins and he said that was rare. As far as healing, it does take a long time to heal. I found that sitting on ice packswas helpful, I wore loose fitting pants (like the travel knit pants)and used our jaccuzi bath tub. Hang in there, it takes a long time for it to fully heal. The last surgery I had was a very large area and the area that took the longest was the Perineum area. I was close to having skin grafts To answer EMPD, I had two surgeries, not because it came back, but because my first doctor did not remove all the EMPD. I have not had an occurance since my last surgery 2.5 years ago. I am examined by my gyn and Dr Sutton annually.
Was your surgery MOHS? My MOHS perianal surgery took 4 months to heal. I'm sure it depends on where and how much tissue was removed. All the lit. says this EMPD skin cancer often returns. The cells are like a crab. It digs down and then appears outside of the incision line, I have read that its important to have slides of the tissue removed read by a patholigist to make sure all of the cancer cells have been removed. Don't rely on assistants guessing if you need check ups. Get someone who is familiar with the research make recommendations as to how often you should be check for re-accurances. I have check ups every 6 months now. If anything looks questionable a biopsy is needed. My slides are review by a path specialist in a university setting. I was told if my check ups show negative results, we can wait longer inbetween checkups. I have my GYN do the checkups. She can use the colpascope to examine the area. Did you have all other areas of suspeced cancers checked out. i.e. bladder, vagina, rectum, colon, etc. This cancer can be a second site of simular tissue. Pain management is a very big issue to us Pagets patients. The area is prone to infection as well as a LOT of pain. That skin has a lot of nerve endings. :^( Its important for everyone to be followed by a doctor until its completly held. Several of us think this condition should be very closely monitored by home health or cared for in a hospital setting. How do each of you feel about this last statement??? The doctor I went to at M.D. Anderson is no longer there. He as a MOHS specialist and got several cases of Pagets a year. Its upsetting that there is not a "recommended protocal that all surgeons use. People, our treatment should not be a guessing game. There are a few studies that show different results. We want the treatment that gives us the best chance of no re-occurances. How many of you have had more that one surgery or treatment? How far apart were they? What was your treatment? What is the longest time you have not had any re-occurance? Is any research collecting the results of EMPD pts in the US??
Hello, I am a 47 year old female that was diagnosed with Extramammary Paget's disease last month. I had a partial vulvectomy and it is taking awhile to heal. I was wondering if anyone had any good tips on healing. I wanted Sumi to know that I also went to Dr. G. Sutton in Indianapolis and have been pleased with him so far. Although he went on vacation right after my surgery and I have not seen him again. I was wondering if Dr. Sutton did followup testing on you. So far his assistants did not feel it was necessary.
Has anyone called or used a doc at the Mayo Clinic?
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
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
Hello! I thought I'd check in since a few others have lately. Just to give you an update on my husband, Mark. He went through six weeks of daily radiation therapy after his last positive biopsies (fall of 2008). The radiation finished in January of 2009 and he just had another recheck at the oncologist in March 2010 and is still clear of EMPD (this is the longest stretch of "clear" that he's had since being diagnosed). The side effects from the radiation weren't pleasant but he's still happy that he took that route instead of more surgeries or using the all-but-worthless creams (in his particular case) that he tried repeatedly. I don't think there have been many cases treated with radiation but you do need to know that it's an option. Take care!
Hi Dave, its Marilyn. Nice to hear from you. We should talk on the phone. I'm at home until Monday am. 541 536 1239 Still in Oregon, but will be traveling down to Calif to scatter my moms ashes near Santa Barbara. I have been very busy this year and just had two more negative biopsies. Have not started the aldara yet. I just can not face an open sore down there at this time. Seems like I just got healed up and am hoping for a short while without any medical issues and pretend life is normal again.
I have had surgery by a gyno oncologyst in 2006, the doc did not remove all the area, and did not discuss it with me... to my suprise after a partial vulvaectomy I found I would have to go for more surgery and possible skin graft. Decided to get a second opion, went to a second doc, we discussed surgery and he referred me to a Dermatologist who specializes in Mohs surgery, we tried Aldera and it did not work at all, he then did laser treatment which also did not work. Went back to the gyno oncologist, he did a radical vulvaectomy and removed a very large area of my buttock, did not use grafts and also before surgery, injected me with a dye, brought me into a dark room with a balck light, the dye lights up the cancer cells, he drew around the cancer cells and did surgery beyond the marked area. The margins came back clean. I have not had a reoccurance in 2 years. Let me know how you have made out.
I had two very small ecema like lesions on my upper left back biopsied and it came back adenocarcinoma EMP. I have no other symptoms. I did have a rare pancreatic cancer six years ago and had a distal pancreatectomy with good results. I'm perplexed at the location of these findings and also wonder if it is a recurrence of my PC.
Just a note to give a quick update on Mark's condition. I am thankful to say that he's had 8 months "EMPD free" since he finished his radiation treatments in January. Although he still doesn't seem to be back up to full power (they said it could take up to a year) it has been so nice to not have to battle with treatments, creams & surgeries for a few months after the two-plus years we were trying each option that the doctors presented. I hope everyone else is doing well too!
Wonderful up date, thank you for all your research. I too had the same result from the Aldera. But I was told this might happen and that ment that it was working. I started 4 or 5 different times to use it as told. When I check in with my dermatologist, he suggested I try less often, i.e. 2 times a week. I will try this next.
Hello Everyone! About 3-4 months ago, my 89 year old mother was diagnosed with EMPD. Best estimate is that she's had it for 25 years or more, completely asymptomatic with the exception of redness of the vulva. No itching, no lesions, no "nothing". Nothing, until she recently had an absessed tooth that required penicillin as treatment. The penicillin made the vulva itching unbearable. After annual check ups for 25+ years, always responding that she guessed the redness was a birthmark (and NO further investigation from any MD!!!), the OB/Gyn she saw for the itching immediately recognized that there was a serious problem and recommended biopsy. Mom had a second opinion, who basically said the same thing. A biopsy was done, and a diagnosis of EMPD came. As you may understand, I immediately responded with a a whirlwind of research, thanks to the Internet. At her advanced age, Mom was completely against surgery, chemo or radiation. Consequently, I was looking for informaiton about the condition, what we could expect of its future and any non-invasive treatment. Fairly quickly, I found several research projects using Aldera (Imiquimod) in conjunction with and/or in lieu of surgery. Boldly, I emailed all researchers in the US. Graciously and compassionately, I heard from several, including a phone call from Dr. Yi in California and a referral from Dr. Ken Hatch in Arizona to Dr. R. Wendel Naumann in Charlotte, NC (near my home). Mom is now under Dr. Naumann's care. Thankfully, he concurred that surgery for Mom was not reasonable and was willing to prescribe Aldera for her in lieu of surgery. Mom is having a great deal of difficulty with the Aldera -- severe burning creating open lesions, etc. (She alternates self-applied treatment days -- Aldera on Monday, Wednesday and Friday, and a steroid treatment on Tuesday, Thursday, Saturday and Sunday.) Mom is not at all sure that she will continue with the treatment. She has already had to stop Aldera twice after three treatments because of the discomfort. As she will be 90 in December, the discomfort may simply be more than she is willing to bear. Without question, surgery is still the most accepted treatment. However, more and more research is being done -- around the world -- using Aldera as an alternative treatment. Sloan-Kettering (in NY) is doing a clinical trial on Aldera in lieu of surgery at the NY campus as well as LSU (Louisiana State University). Regardless of Mom's outcome, I will forever be glad that I found a treatment that she was willing to try. I will also forever be grateful for Dr. Yi's, Dr. Hatch's and Dr. Naumann's compassion, integrity and clinical expertise, as well as their tireless efforts to offer solid, appropriate, non-invasaive medical intervention. As Dr. Naumann's RN told me, look to NIH (National Institute of Health) for solid medical information, rather than other Internet sites. Although well-intended, many websites offer misleading (or simply incorrect) information. I am glad, however, that my research uncovered alternative work being done on EMPD, helping me learn more about the disease and putting me in touch with physicians across the US who, with great compassion, have been helpful, encouraging and supportive. I know this is long ... but I suspect that all who are dealing with EMPD want to know about all possibilities. I share our story in hope that it will encourage and support someone along the journey.
folks, I spend some time talking to a oncology nurse at the ACS. The subject was why we had such difficulty find good info on EMPD. She said there phone staff are trained to take a phone number and get back to them if there are still questions they can not answer. Then that info is passed on to someone who has more sources to research for us. A oncology nurse called me back and gave more info on site to look at. One site that we can always us is Emedicine. As you know, some journals are protected with copywrite articles and we would have to pay. If we find an article that we can not read due to protections, just give them a call. They have access to many we as layman do not. One that same vein, if you have found very useful info, please post it for all to read. You all take care and I wish you the best.
I explained my condition to people this way. In layman terms: I have a very rare skin cancer. Its of the pheramone sweat glands. There are only a few hundred cases reported in the literature in the whole world. At this time the cause is undetermined. This tissue is found on the breast, vulva, anal, perianal, scrotum, penis, ears and eye lids. This cancer has a high rate of returning outside, but near the treated area. Hence, its very important that all efforts be made to clear the edges of any remaining cancer cells. I was told by my local docs and my M.D. Anderson doc, "Its VERY important to determine, before treatment, that this is not a second site of a primary cancer in the vagina, bladder, rectum, intestine etc." As then a different surgery may be performed to include all cancer sites, not just the surface skin. After the inital treatment, the pt. should return at regular intervals to check for any return of this disease. So this condition is a ongoing cronic condition that has to be watched. Yes it is confusing, frightening and uncertain. That is why this little group of folks that have been thru it already is important. We can understand what you are going thru. Be compassionate about your concerns and fears. You are young, you have a condition that no one you know has ever heard of. You do not know what your experiences will be and what the treatments will be like. We have formed a little group that might be able to be there for you during and after your treatments. So write to us any time you feel the need, or call any of us that posts our phone #s. ??When is your surgery planned? Is the plan for you to stay in the Hospital? Do you have someone to help you with wound care when you get home? Do you have an idea as to how long it will take to heal? So the docs plan on using Aldera cream after you heal? Hope to hear from you soon and good luck to you. Call anytime. EMPD
I found that this web site is a good article for anyone with EMPD to read. Especially before treatment is possible. WWW.medscape.com/viewarticle/410588_3 If anyone else has any to add, lets start a list of references for anyone new to this subject. Marilyn
Hi, yes I do want to talk to you. I talked to Peachton today. Found out how her surgery went and how she is doing. Gosh this stuff is sooo painful. It hurts to just think about it. I will call you tomorrow even unless thurs is your day to Fence. :^) How neat, I bet its fun. I used to love to watch it in movies and at the Olympics. what time zone are you? We are Pacific. I will start a new topic. It will be a survey of questions to try to collect info on all of our experiences. Treatment type, years had condition. It coming back and what ever we can think that might be pertinent to collect for our docs. :^)
thanks Bither for your call. I have not called you back yet, as I have been hoping to hear from Peachton and her progress from her surgery. I re-read my last post to see what I sounded like. Yes, I see that towards the end, I sounded pretty disguested. I have not gone thru hardly anything compared to your long treatment period. You are so sweet to send your encouragement to me. thanks! :^) I have been feeling pretty good in general. But when I started the Aldara, after a few days, I had a big bruise/bleed in my groin. I am on blood thinners because I had a Pulmonary Embolism a few years ago. I have to keep my blood thinner than most folks. I did not know what caused it and/or should I call a doctor, and which one. I did not know if it was important or not. Not really wanting to call or see any medical people for a while. Just wanted to lead a normal life for a few weeks. (I guess it was a feeling of anxiety and uncertainty.) I could not tell if the bruise was due to the Aldara or something I had done somthing to cause it. I will always be concerned for our group when they are going thru active treatment. I am happy that we have found each other. I hope to reach Peachton tomorrow and then try to reach you on thurs. Is evening or days best for you. Thanks for your concern. I appreciate it. Let me know how you are doing and call me anytime to share. Your EMPD Buddy.
Hi bither, I started the Aldera right after my surgery skin was covered with new skin. (it took 4 months) Still quit fragile tho. Used it 3 nights and had a slight tear in the new scar tissue. Thought it would close up in a couple of days and I could continue the 3 days a week routine. Well it did not close up over the week end. So I was afraid to start using it again until I checked with my Dermatologist. We did see, even with only three days of use, a slight reaction. i.e. redness itching etc. My hubby and I decided to hold off using it again until the torn tissue had closed over. It is taking a bit longer than we had thought. The tissue continues to weep and bleed some. The plan right now is to be diligent to keeping it clean before we use the aldera again. Hopefully next week I can start using it again. But I have really been annoyed with itching in that area. Especially in two small spots. Its very compelling and I wonder..and hope.. that it has not come back already. Time will tell. I understand the importance of using the cream. Try to activate the body to go kill any Pagets stray cells. So I will keep trying to use it. It has taken a village of docs to pull all their knowledge to help me pull thru each step of this process. And their are not many who have ever seen Pagets let alone treating it. Thats why we need to keep sharing, so we can discover the best way to go about caring for pts. with Pagets. I feel our input is important to the docs. Communication is the only way to come up with the best plan. Yes I feel like my recovery from MOHS would have gone much better if I had been in the hospital. My pain and wound care could have been monitored by the nursing staff, not my husband. I felt it was inhumane and barbaric. I would never allow anyone I know and love to go thru anything like I went thru. I would never put up with it again. I would rather die first! There I said it! So a support group, sharing with our doctors, is the only way to help those who come to this site for advice on their treatment. I'm sorry if the above upsets some of the readers, but I feel strongly about this!
I googled optical biopsy Its a fiber optical light. Used for early detection of cancer. you can read some of the answers under the google search. Sounds interesting. I will read more, but wanted to get back to you first. :^) take care. Say empd folks, I was talking to our American cancer society volunteer yesterday. She is trying to find a way for us to be funded to try to find more of us. yeah. I have to call her back, she called last night and left a message with my husband about a grant. maybe this will help us. We are rare birds you know. :^))
Hi, Bither, I do not know what Optical Bx means. But I will google it and see if I can find out. I think their are two men on our site. One of our posters is writing for her hubby. So Dave and Mark are guys. regards empd.
Bither, you might want to talk to Mruiz. She might need encouragement to be more diligent on doing her recommended treatment. Any treatment might be better than doing nothing! I wonder in what part of the country we all reside. I live in Oregon, but spent most of my adult life in Calif. I am 68 years old. Marilyn B
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