paking,
I can imagine that it might be hard to find another with your disease. I am an oncology nurse and I have attached a link that has resources that you might be interested in. I hope that this can answer your questions until a person with first hand knowledge can respond to you post. Best of luck to you, Carm RN.
My Goodwill
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paking started following
Question: cowdens disease
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paking asked a questionBreast Cancer
cowdens disease
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carm
about 5 years ago
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paking shared an experience
Procedure or Surgery (Colon surgery (colectomy or hemicolectomy))
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paking asked a questionBreast Cancer
Does anyone have the diagnosis of Cowdens disease. I am the only one I know who has this disease. Hoping to find a person to share,
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SueRae1
almost 6 years agoI saw a geneticist last month to consult about testing for Codwen's - i am currently being treated for for Advanced Renal Cell Carcinoma and Metastasized Triple Negative Breast Cancer. I have had issues with polyps, cysts and fibriods, etc my whole life. I lost my right ovary, fallopian tube and appendix due to a cyst that burst when I was 24. My blood has been sent of a lab in CA to test for the T10 mutation, along as well as 14 other gene mutations that make you substantial to cancers. I was told that I would not get the results for at least 12 weeks the received my samples. I am also having my two cancers sequenced by Foundation Medicine (in the Boston area as it happens) to determine the specific mutations that they manifest. My consulting Breast oncologist, and treating Breast and Renal Cell oncologists are hoping that they will be to find cross over mutations that will lead to a more targeted treatment that will treat both of them. I am currently on a cocktail of 3 relatively broad band chemo meds. I am responding to treatment but more a more targeted approach would be more effective and less debilitating.
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AlexisRouse
over 3 years agoWell this is not a common disease; however, researchers estimated that about 1 in 200,000 people are affected by this syndrome. It is a hereditary disorder which is described as multiple noncancerous, tumor-like growths (hamartomas) on different parts of the body. There are various test performed by the help of test kits available on http://www.ilexmedical.com/products.php?id=144 and others to detect and diagnose this disease. It increases risk of certain cancers such as breast, thyroid or endometrium (lining the uterus). It generally occurs due to the mutations in the PTEN, SDHB, SDHD and KLLN genes. Because of its complex nature, the patients are generally examined by a multidisciplinary team which has surgeons, gynecologists and dermatologists.
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