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Blood, Sweat and Tears? Save the Blood

My genetic counselor told me that saving a blood sample allows you to designate access to it by family members for genetic testing for hereditary cancers years down the road. You can make a difference to help loved ones.
PUBLISHED January 23, 2019
Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools–We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.

Any cancer treatment can involve blood, sweat and tears, but did you know you could save the blood? My genetic counselor told me that saving a blood sample allows you to designate access to it by family members for genetic testing for hereditary cancers years down the road. You can make a difference to help loved ones.

After recently learning I carry a genetic mutation that can increase the chances of breast cancer and possibly pancreatic cancer, I struggled with tracking down my blood relatives to alert them. It was the responsible thing to do, yet at the same time I worried about causing needless cancer worry and fear. Which relatives on which side of the family needed to be alerted? I had no idea. What if the genetic mutation hadn't come from their side of the family? What if it had but they did not really want to know about it?

What happens when loved ones are diagnosed with cancer or die from cancer that could be genetic? How are geographically scattered extended families able to learn their own risk and to make their own informed medical decisions? One option for those of us who have had cancer is to store a blood sample that is made available to future generations of our families.

Save loved ones, some of them anyway, from some needless worry or even cancer if possible. The National Cancer Institute has background and introductory information about genetic testing for hereditary cancers. FORCE, which stands for Facing Our Risk of Cancer Empowered has information as well as links to labs that offer genetic testing for hereditary cancers. The American Cancer Society (ACS) offers information about genetic testing as well.

Some labs or testing locations may have the option, for a small additional cost, to store a sample of your blood for genetic testing by future generations of your family. It is helpful to talk to a genetic counselor both before and after testing. Genetic counselors are trained to walk you through the choices, consequences and implications of both genetic testing and choosing to save a blood sample.

Is it time to get tested? How often, due to scientific advances, does it make sense to get tested again? What are the choices involved to act on genetic test results if something is found? Genetic test results can be positive, negative, inconclusive or include a result of unknown significance. Your genetic counselor can help you with the many factors to consider. You may also want to ask family members beforehand about whether they want to know your results or not.

If you do test positive for a cancer-related genetic mutation, there is no need to panic. Your doctor or genetic counselor can walk you through which types of cancer you may be more susceptible to get and talk to you about ways to prevent and screen for these cancers. Options can range from making healthy lifestyle changes, using screening tests with increased frequency or considering prophylactic surgery. A positive genetic result does not mean you have a cancer diagnosis.

Is it time to get retested because more genetic mutations related to your type of cancer have been found? That is what I did last year, and it led me to have a prophylactic double mastectomy. For me, it made sense to save a blood sample for future generations. Genetic testing raises important questions. Ultimately, there are often very personal choices to make. It is exciting that we, as cancer survivors, have the opportunity to help family members and future generations down the road.


 

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