I connected with Traci a while ago on Twitter, and am so excited to read and share her story with you. Please meet Traci!
I visited my dermatologist in August 2013 awaiting the pathology on a skin tumour on my left breast. The tumour’s name I forget but the pathologist said it was indicative of Cowden Syndrome.
What the hell is that???
My derm explained to me about the higher risks of cancers, tumours etc. All I heard was blah, blah, blah.
I had the criteria of Macrocephaly, endometrial cancer, thyroid problems and papillomatosis of both breasts. So the derm made the diagnosis on the spot.
She got pretty excited because I had a rare syndrome. I wasn’t laughing.
So off I went to the geneticist who confirmed through blood work I had it. The geneticist reviewed the percentage risks of the various cancers and then announced your risk of breast cancer is 85% so your breasts need to come off. Whatttt???
What happened to breaking it to me gently. Sheesh!
My head was swimming as I sank into a dark depression. I felt like I had a gun to my head. What kind of life will I have? How long will I live? I don’t want to die.
I went for various breast, thyroid, bladder, kidney and colonoscopy testing. I was always at the doctors but I was getting really sick of them.
While all this was going on, I turned to what turned out to be a completely useless support group for Cowden patients and their families with one saving grace – meeting Heather.
Heather was so kind to me and directed me to her blog, HopeforHeather. This courageous young lady took the time to show me that Cowden Syndrome albeit scary is not a death sentence.
She showed this old broad how to navigate Twitter and I soon made more Cowden friends.
Through a lot of hard work on my part I came to terms with my breast cancer risk and will be having my prophylactic bilateral mastectomy with immediate reconstruction this November. This is the most frightening thing I’ve ever done.
How much do I have to sacrifice to live? Apparently a lot.
I’ve learned a few things along the way. And the biggest thing I’ve learned is that despite what challenges Cowden throws my way, I will stop it dead in it’s tracks. I will live a long and healthy life.
I will survive.
Special thanks to Heather for letting me guest blog.
If you’d like to follow my journey, please follow me on Twitter @cowdensgirl and/or check out my new blog at www.cowdengirl.blogspot.com
Traci aka Cowden Girl xo