I have been diagnosed with Cowdens for quite a while and was wondering if there are any new things that have been discovered in USA.

There was an MSN group set up for support but they let it go. A doctor from Ohio, I think was creating a new treatment. I've been looking everywhere as well. It is extremely irritating. How long have you been diagnosed? I had obvious signs from age 6 but it wasn't found until I was 30. We are in wait on my 4 year old and 6 year olds results and my sister was also tested last week. I'm a nervous wreck and looking for support but there doesn't seem to be any out there.

There are no support groups any more. I was a member of the MSN group but that folded. I have been diagnosed since the late 90s by symptoms and then two years ago when the parameters for the blood test changed I was diagnosed from the blood test. I have all the symptoms except the intellectual disability symptom. For years I thought that I was a bit of a hypochondriac because I always seemed to be visiting doctors with this lump or that lump. When I was diagnosed my then Doctor told me that if I hadn't been as vigilant about my health then I would have not still been in this world and that was over ten years ago. All you can do is to be vigilant. If you notice something wrong go and get it checked and make sure that the doctor understands the very real possiblity of cancer. I have been lucky. I live in Australia and we have some really switched-on doctors here. I moved states 8 months ago and have had very little trouble getting sorted for checkup in the new state because before I left I made sure that the doctors recommended someone good in the new state. You will find that you get depressed but that usually happens when something is not going well. Keep your chin up though because you can still live a very full life. As you can see by my login name I am 58 and still going. Too much to do and I still have only seen half the world. Hope that you can get sorted out. Lesley

LOL about getting sorted out. I don't think it's possible at this point. Every time I visit my geneticist he says something else has to be looked at and the last time said,"well, we will try to keep you alive." It is so frustrating to live in the US because it forces me to rely on Medicaid. Medicaid pays $500 in labs--blood work, scans, surgeries, etc and it is hades on earth getting them to extend it. Most places won't so we have to go to a hospital 3 hours away that allows payment based on income. Frustrating. I know how you feel about how if you weren't diagnosed you wouldn't be here. I had the mastectomy done the year after diagnosis and DCIS was already in grade 3 in spots. Had I not found that note from the OR report we wouldn't know. My doctor actually told me he could do nothing when I came in with blood coming from one nipple. That's how Medicaid patients are treated here. Do you know why the support group folded? There were some nice people there and they really helped when I found the note, read what it was, and knew my test would be positive. I'm hoping not to go anywhere just yet. Recently had a hysterectomy to prevent endometrial cancer. The renal cancer risk is a huge worry since I have only one kidney and colon cancer is dominant in my background but I have to take it a day at a time. All that changed for me was getting a name. For my sister and kids it may be different though and I think that is why I'm so sad. I blame myself :( I wonder how to set up support groups? At least this one is here.

Don't blame yourself. At first I was like that because I have an eight year old granddaughter and I was worried that she might have it. But her father does not have it so she is very unlikely because it is autosomal dominant. This means that it has to be past directly from a parent. Sometimes though it can be a spontaneous mutation. With my case the docs are not sure as one of my parents has died and he was never diagnosed. They think that it was more than likely him. I have had all the operations- mastectomy, thyroidectomy, hysterectomy and a few others thrown in for good measure. Don't blame yourself that your sister has it. It has obviously come from one of your parents. My siblings don't have it. They are both boys and one of them has a daughter and she has been tested and has come up negative. With this disease it does not run true to form. The standing joke with my doctors is that I never behave like the medical textbooks say that I should. My answer is generally -No but I keep you lot on your toes. The answer to your question re the support group was because all the MSN groups folded and they had to go to another server and the person who ran the group chose not to start it up again. Keep the chin up and keep the docs in line. Don't let them bully you. Remember the name of the expert- Dr Charis Eng but I am not sure where he or she hangs out. A lot about Cowdens has been written by this person. Do some internet research you will find it interesting. Bye for now Lesley

Hi Lesley! Yesterday I actually bought a domain name so I wish we could find some of the former MSN people. I can't remember what it is for sure but I think www.cowdensyndromesupport.com. I'm still waiting for it to come through so I can register. Hoping I didn't get rooked since they make you pay 6 months in advance. It wasn't a lot. I had an ancestry subscription for $20 a month that I wasn't using any more and this will probably turn into no more than that. I'll definately be posting it here when I get it ready. A little worried though because other sites are saying it is still available. The blame is hard. I was told that too--if my kids are ok then my grandkids will be. Cowden's is bizarre, isn't it? My great-grandfather who had the signs too still lived to be 88 while grandpa died at 49. That's what is so scary--it not being able to be predicted. Today is a special day for me. 17 years since I had to take chemotherapy! The DCIS was treated by mastectomy alone. So I will be watching my favorite movie today with all the extra stuff. My husband bought me the 70th anniversary of Gone With the Wind package. I've been awake since 5 am excited about it. I'm such a dork lol

Hi Andrea My DCIS was treated by mastectomy, no chemo but I have the problem that I am allergic to a lot of drugs so if I ever have to have chemo I think that there will be big problems. Be interesting if you can get that domain name and a site set up. I am not sure other than the one that I mentioned last post of any other Cowdens Experts. Saw my granddaughter on the weekend for a few hours so that was good. Recently have discovered that my poor eyesight is also related to Cowdens. Anyway we are on an interstate trip this week so I might not have a chance to check in as regularly. Will post again soon Lesley

Hi Lesley, I am about to call and confirm the domain name. I'm so nervous. Hopefully people will be able to find it. I don't know of any experts though. Hopefully it will be enough for people to come together and share their stories? I'm glad you got to see your granddaughter. Sorry to hear about your eyesight. I have streaks in front of my eyes that seem to be getting worse with age. Well, I will write back when I hear from you.

What is the e address for the new Cowden group--I can not find it.. Karen (karlas202@aol.com)

It's www.cowdensyndromesupport.com I am horrible at SEO and am needing to do a lot more work on it for it to appear on search engines. Right now I'm the only one on there so it's not really anything. Guys I have been so depressed lately and had hopes that this could be something to make me feel like my life is worthwhile. Hard to word what I mean right. Just not feeling useful for anything right now. I hate this condition with every ounce of my being. If my 6 year old and 4 year old have it I am going to be distraught beyond belief.

Andrea--What you did is a great thing and I know that people other than us will use you website. I am so glad that I found you and Lesley today. I have been feeling like a duck out of water. I am going to your new site now. Thank you soooooo much. Karen

Hi Karen! I saw you there and thank you SO much for posting. I'm hoping for the best with it. If I can earn enough money in the next 6 months (since it's paid until then), I want to switch to V-Bulletin. V-Bulletin is a very easy to navigate forum system that I have more experience with as a coadmin of a former Christian site. Because we are having to pay back SSI for an overpayment right now, I am trying to make enough by freelance writing to cover the cost but with everyone getting sick and things not going so great it doesn't look good for my time with writing. I had an idea though. If this site goes well then my birthday falls about 6 months from now and I can ask my husband for that for my birthday. V-Bulletin is AWESOME because you can use smilies, have your own signatures, be extra careful with privacy issues, and the biggest thing--I HAVE EXPERIECE lol. I would want at least 30 or 40 members to justify the expense though as it can get costly so for now this will work. Did you see my sister on Facebook? Her name is Kim Matheny and she posted not too long after you did --thank you for that by the way! It took me a day to figure out that would be a good idea to get word about the site out and you figured it out immediately. I joined the groups for the rare times I am actually on Facebook. Thank you for helping me.

Hi you guys, I am back from my interstate visit and am I ever glad to be home. I went to look for the new site and it would not come up but then again it is late here and I am probably not concentrating. Will have another look tomorrow. Got back to find that it had rained non stop since we left so my yard is knee deep in grass. My other section is also knee deep in grass and the dam in the other section has risen about a foot. We had mowed and slashed both sections and they looked really good when we left. Ah well we know what we are doing when the rain stops. Will look for the site and if I can't find it I will let you know Lesley

Welcome back Lesley! I need to check out the site as it has been a few days since I logged in (oops). Had a pretty crazy trip to Little Rock on Monday, Hannah has been sick, and it has just been hectic. Yes, definately let me know if you can't find it. I saw I had a reply come in my email and it said, "this message has been blocked for your safety" ABOUT the website but I opened it anyway and it was just someone new checking the site out. Not sure what the email is about but hoping when someone replies others aren't getting a "blocked for your safety" note. My kids will be home in a few minutes but I have the afternoon to work on it. REALLY behind around here.

Found the site have posted a message. It was my fault. I was putting an extra s in the site name. Lesley

I'm so glad you figured it out! I'll go to the site as soon as I finish up catching up email. Wasn't able to be on here yesterday. My husband went to Memphis and left me with both kids and they were somewhat hyper.

I went to Memphis last year and visited Elvis' house. It was very interesting. We also went through Arkansas. We spent 50 days in USA and I got heaps of photos of nearly all your famous icons. Great fun!