How does someone who is adopted put together the pieces of their genetic puzzle, especially after a cancer diagnosis?
For 49 years, I have been uncomfortable with family history questions. Released for adoption at birth, I have never had enough information to fill in those important questions. All of my life, when asked those questions, there was nothing I could say with certainty. The information given to me as an adult by my adopting agency was general at best. Family history of strokes and heart disease, they listed. That wasn't anything I could fit into the forms. They always asked which relative had what. I had nothing. When the questions were asked instead of written that was even more awkward. “I wouldn't know, I am adopted,” became my reply. Deep down, it always felt so unfair.
When I found out I had inflammatory breast cancer at the age of 38, my need to know was sparked again. I also felt it important to reach out so any other family members that would need to know to be aware I had this disease. I reached out to the adopting agency and they, in turn, reached out to my birth mother. I received a letter in the mail that only stated what I already knew, except it included that she had breast cancer, too. I called the social worker to see if there was any way to get more specifics and to clarify if it was indeed inflammatory breast cancer. I then learned my birth mother would not give out any specifics. She would only state family history of heart disease and stroke. She also was adamant that they not contact her again.
This turned my stomach upside down. I was the mother of three daughters and now I hear my biological mother had inflammatory breast cancer. Did any other family members have it? I knew I had a half-sister older than me — did she have it? Science has not found a genetic link to IBC, yet I have met women who had it run in their families. This plagued my mind. I couldn't help but wonder if the information was correct.
As my oldest daughter neared the age of 28, I began to panic inside. She was to begin screening when she reached the age 10 years prior to my age at diagnosis. I wanted her and our other daughters to have the answers I never had. I felt they needed the answers in order to make informed decisions. I can't explain how it made me feel wanting those answers so badly. Yet thinking they would never come was painful. I felt powerless and inadequate, although it was not my fault or within my control. I felt that as their mother, I had the right to be able to provide this medical information for our children and grandchildren to come.
On a whim, I decided do a DNA test to at least be able to tell them our heritage. After years of dead ends, I never thought it would lead to a family health history. When the results came — in less time than they had suggested – I was stunned, to say the least. Through an unbelievable set of circumstances and choices, I found the answers I had given up on. It turns out my biological mother did have breast cancer, but it was not IBC. I will have to say that discovery was good news. A kind biological aunt was able to fill in most of the family history for me. It turns out she was happy to do it. She had been searching for years to locate me. I cannot express how complete I feel to finally have answers to the genetic questions on one side of my family tree. I also uncovered some difficult truths, but it was worth it to me. I can finally provide answers to these very important health questions for our adult daughters – something I never thought would happen. I am thankful to have these pieces of our genetic puzzle put together.