"I am not diagnosed, but scheduled for a core biopsy on Jan 3. I am very interested in anyone who has tested positive for ATM (vus). I would really like to be able to compile all specific diagnoses info on people with positive ATM (vus), as my genetic counselor states more research is needed to understand the significance of this. I have one aunt who was tested due to our family history and her own diagnosis of breast cancer, and she has requested a copy of the tests to share with me. I hope to be able to share this with all, if it indicates she too is positive for ATM."
What led you to doing the testing? "I had a colonoscopy in 2013 that resulted in a tubular adenoma, and it had only been two years since my last colonoscopy. Also, I have multiple cancers on both side of the family -- some at very young ages."
What were your results, and what choices have you made based on the findings? "My genetic testing results indicated negative for everything except ATM (vus). Because not much is known about this yet, I make sure to do monthly breast self exams as I have very dense breasts and mammograms and ultrasound could potentially miss issues. Also, I never miss colonoscopy deadlines as well as seeing my GI in between if indicated. I even see a dermatologist annually as I have had precancerous areas removed and most recently had a dyplastic Nevus with severe atypia removed."
Was payment an issue? "I only had to pay about $125 for my portion of the fees thanks to good insurance."
How have you discussed these decisions with your family? "I explained that I was getting tested to make sure there were no underlying risks for cancer, and said I would do whatever the genetic testing indicated should be done to prolong good health and longevity. I plan to push for my children to get tested, too. My kids are 33 and 27 and one has a child, so it becomes very relevant to know what may hinder their health."
What suggestions would you have for others? "Although some would rather not be burdened with the worries of what 'may cause cancer,' I prefer to remain proactive and preserve as much of my health and life as possible. Knowing what risks might be in your future is the best way to be prepared if we are ever faced with that awful diagnosis. Take the test. Know what risks you face. Then live life to the fullest and enjoy your family and friends for as long as you can!"
-- Fab65, tested positive for the ATM genetic mutation
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