My Children and Hereditary Breast Cancer or Ovarian Cancer
A diagnosis of ovarian cancer earlier this year was a life changing event. Fear, anxiety, sadness, body image issues, and short and long term effects of chemotherapy, only begin to touch on the myriad of worries which confronted me. Still, one of the most difficult things to deal with has been the not-so-surprising presence of a genetic predisposition (due to a BRCA2 mutation) to cancer. The thought that each of my four young adult children had a 50% chance of inheriting this gene was almost more than I could bear.
How does one deal with the guilt? How does one speak with her children about such an inheritance? Does one inform female and male children at the same time and in the same fashion? Does one give married and still unmarried children the same details? Does one advise her children to be tested as soon as possible? Will a positive BRCA2 test with all its implications interfere with a developing or even presently stable relationship? Can one avoid adding pressure to the lives of adult children when discussing the issues of marrying early and having babies as quickly as possible so that they may take advantage of risk reduction therapy at a young enough age to reduce the chances of ovarian cancer and breast cancer?
There are no standard answers to any of these questions; indeed the approach will surely differ for each family based on the individuals and the family dynamics. Several interactions have guided my thinking regarding these issues.
Firstly, I cannot say enough positive things about resources available through Sharsheret. Sharsheret’s genetic counselor made herself available to me within a few minutes of my initial call and kept closely in touch. She pointed out several important concepts to me, including the ideas that: 1) I am not the only source of information for my children; 2) Each individual on the receiving end of the information must decide for him or herself how to proceed; 3) All of the information does not have to be discussed in one sitting– indeed the important thing is to keep the lines of communication open; 4) Difficult as this discussion must be, knowledge is empowering as it allows positive actions to be taken.
Secondly, a wise and spiritual friend focused my attention on the positive implications associated with this difficult discussion, namely: truth, trust, potential for decreasing uncertainty, and potential for risk reduction actions.
Finally, one of my children, aware of the pending issue, asked me straight out about the results of my testing, before I was ready to have the big discussion. When I made the result known to her and spoke with her about some of my concerns, I was amazed at the strength she imparted to me by her personal views.
I have yet to work through all the details, but I have gained understanding through learning as much as possible about the implications of the BRCA gene mutation, and through speaking with wise and trusted professionals and friends.