They determine so much about us but, of course, not everything. When my mom was diagnosed and treated for ovarian cancer, she was asked by her oncologist to get a genetic test. She had already had breast cancer and so she decided that it would be good to know for future treatment. Then she compared notes with her cousin Mary. They had different gene markers that pointed towards cancer. My mom is MEN1 and BRCA 2 while I believe Mary is BRCA1. Her brother got tested. His kids got tested. Mary's kids got tested.
I haven't gotten tested. My sister hasn't gotten tested. I can't and won't speak to her decision because I respect that it is hers to make. My decision is two parts. And I am sure both parts are understandable to most. One part - fear. Do I want to know that I could end up going through what my mom has gone through? I know that even if I have the genes they may be dormant instead of expressing themselves. (I believe that is the correct terminology. I would have to check with my best friend the cancer scientist to be sure. Yes, she is trying to cure both breast and ovarian cancer. She is a good friend to have.) I digress. Fear of what could happen and fear that somehow if I did get tested and was found to have the gene that suddenly my insurance company could somehow use that knowledge to dump me as if having the gene is a preexisting condition. I hate the term preexisting condition. It is a cop out for the companies not to provide the help that we pay them for. I know that I probably need to look up the laws so that I can reassure myself that gene testing won't put me in that preexisting column. Now that I am a Mom, I worry about so many things and, of course, this is one of those that I worry about. I know that I need to test at some point. My Mom is so hoping that she hasn't passed these genes on to us so that our kids don't have to worry about it.
I think I am getting closer to accepting that I will need to do this so that I can put my mind at ease. Regardless, knowledge is power. If I have the genes, that will help my doctors to better watch me and they can do targeted testing. But at the same time, if they are targeted testing could they miss something else?
It is something that I will wrestle with for a little while longer and then hopefully I will make peace with it.
Definitely a difficult position to be in. I can completely understand your hesitation when it comes to getting tested. You'll know when the right time is.
ReplyDeleteI can't even imagine what it would be like not to know and at the same time, can't imagine knowing! The preexisting condition possibility would have me doing my research. Todd works with the state because of the benefits and life insurance they provide without medical exams.
ReplyDeleteGlad that you shared this!
Hey sis - you expressed my feelings so well - I feel much the same way - tho - without the testing my doctor is pretty sure that I have MEN1 just based on the hyperparathyroidism that I had - a precursor to MEN1 ... but I'm waiting til an insurance case makes it to the Supreme Court - the law is there that states that insurance companies can't use genetic testing to deny you care under the concept of pre-existing conditions - but as i said - until a case makes it through the courts - I'm not going to trust the insurance companies ...
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