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Topic: Cowden Syndrome

Forum: Canadians Affected by Breast Cancer —

Canadian health care, clinical trials, and life in general in the north.

Posted on: Jan 9, 2019 03:38PM

baddy247 wrote:

Hi all,

I was 33 years old when I was diagnosed with breast cancer in March 2016 and was fortunate enough not to require chemo as they had the cancer at an early stage. However, the worst has yet to come. In August 2018, I was tested positive for Cowden Syndrome, a rate genetic disorder (1 out of 200,000) that is characterized by multiple noncancerous, tumor-like growths called hamartomas and will increase risk of developing breast, endometrical and thyroid. In addition, this rate genetic mutation will increase gastrotestinal polyps, kidney cancer, melanoma and and possibly non-cancerous brain tumors. This week I found out that I have a atypical endometrical hyperplasia. Progesterone Therapy was not an option as my breast cancer is ER/PR positive. Dr. suggested surgery. It's been an extremely frustrating experience. To make matter worst, I found out that I have many polyps in my colon via my colonoscopy and are currently waiting for the pathology results of these polyps. I am extremely worried and scared for what's going to come for rest of the year. This genetic disorder has made living so much more difficult. I am writing in this forum because I want to know whether there are any ladies out there that have heard or come across this genetic disorder in Canada. If so, how did you deal with this disorder? Please share. Thanks for your time.


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Jan 24, 2019 02:31AM Fembot wrote:

Hi baddy247, no I'm sorry, I don't know anything about CS. Maybe a general internet search would yield more info. Strength and best wishes for you.

(#)(@) Dx age 47 Dx 12/6/2017, DCIS, Right, 3cm, Stage 0, Grade 3, 0/1 nodes, ER+ Surgery 2/2/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Surgery Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant

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