My Story -Testing for the Breast Cancer Gene

Angelina Jolie decision to share her story about being tested for the breast cancer gene and undergoing a double mastectomy is major and will help so many men and women.  It is incredible that as such a public figure, she was able to keep her story private until she wanted to share it with the world.

Shared it now is!

Since writing her story on the Op-Ed page of the New York Times, every newspaper, news cast and social media is abuzz with her story. Her honesty and truthfulness will help many make a very tough decision.

Here is my story about how long it took me to be tested and what the magic words were for me.

I am not sure of the years anymore since they all blend together.  When we first started fundraising for breast cancer in 1990, Dr. Judy Garber suggested to my sister and myself that we both get tested for the breast cancer gene since breast cancer ran in our family.  Dana-Farber Cancer Institute had a study and it would not cost anything to do at that time.

My sister got tested and her test results were negative.  This did not mean that I was negative.  Even though my sister tested negative, I still could test positive for the breast cancer gene.

At that time, I could not get tested. I did not know what I would do with the results if I did test positive.  I was being seen at the High Risk and Prevention Clinic at Dana-Farber once a year, by my gynecologist once a year and my primary care physician once a year. I felt being examined three times a year by three doctors was one way I could insure if I did develop breast cancer, it would be detected early along with having my mammograms and ultrasounds.

I will be honest since I have fiber cystic breasts, I did not or do now self-breast exams. I have so many lumps and bumps I would be living at Dr. Judy Garber’s office at Dana-Farber! Since I am proactive about my breast health, this course of action works best for me.

Several years ago, Dr. Garber said the magic words to me to convince me now was the time to get the genetic testing done.  Do it for your daughter!

I started fundraising for breast cancer to help raise money for breast cancer research so I would see my daughter grow up something my mother did not get to do with her daughters when she passed away at 44 years old.

Now, my health insurance covered the testing something it had not done before.  I was older and was set with my health insurance and other insurance policies I might need in my life, no fear of being denied a policy for test results.  It was the right time for me to be tested for the breast cancer gene. I was doing it for my daughter.  Magic words indeed!

My results were I did not carry the gene for breast cancer.

Sharing my story before did not matter. But now standing with Angelina Jolie and saying I was tested to seems to have so much more meaning.

This entry was posted in Blog, boston breast cancer charity, BRCA 1 or BRCA2 genetic mutation, Breast Cancer, Breast Cancer Charities, Breast Cancer Stories, breast reconstruction, Cancer Stories, Carol's Story, Dana-Farber, dense breasts, health insurance, mammography, mastectomy, medical coverage, research and tagged , , , , , , , , , , .