This is interesting. I was diagnosed with DCIS in June and had a double mastectomy in July of 2024. Very dense breasts but no calcifications until this year. I asked my surgeon "why me? why now?" given that we have no history of breast cancer on either side of my family. She said that only 15% were driven by genetics and for the rest of …
This is interesting. I was diagnosed with DCIS in June and had a double mastectomy in July of 2024. Very dense breasts but no calcifications until this year. I asked my surgeon "why me? why now?" given that we have no history of breast cancer on either side of my family. She said that only 15% were driven by genetics and for the rest of us, it is the result of environmental exposures to carcinogens (of which we have plenty) and/or periods of intense stress and grief. The latter applies to my case as I was caring for my very elderly parents for many years until their death in 2023. The stress and grief was enormous. In any case, I was offered genetic testing but chose not to because it would have been entered into my clinical care record. For a study, I would have done it but I was worried that it could be used to deny me coverage were I to change health insurance. I am currently Kaiser. Any thoughts on this?
Hi Jill. I'm a WISDOM participant and also part of the study team. I'm sorry to hear about your diagnosis, and all the stress and grief you've had to go through. I hope some passing of time has brought some solace. I wanted to follow up about your question: Although the study does not enroll people with a history of DCIS/breast cancer, I want to let you know about The Genetic Information Nondiscrimination Act (GINA) of 2008. It is a federal law that protects individuals from genetic discrimination in health insurance and employment. Should you ever want to pursue genetic testing in the future, GINA prevents employers from making job-related decisions, such as hiring and firing, based on genetic health information. In addition, it prohibits health insurers from determining the eligibility, cost, coverage, or benefits of a health insurance policy based on an individual's genetic information.
I hope this information is helpful to you and others who may read this post.
This is interesting. I was diagnosed with DCIS in June and had a double mastectomy in July of 2024. Very dense breasts but no calcifications until this year. I asked my surgeon "why me? why now?" given that we have no history of breast cancer on either side of my family. She said that only 15% were driven by genetics and for the rest of us, it is the result of environmental exposures to carcinogens (of which we have plenty) and/or periods of intense stress and grief. The latter applies to my case as I was caring for my very elderly parents for many years until their death in 2023. The stress and grief was enormous. In any case, I was offered genetic testing but chose not to because it would have been entered into my clinical care record. For a study, I would have done it but I was worried that it could be used to deny me coverage were I to change health insurance. I am currently Kaiser. Any thoughts on this?
Hi Jill. I'm a WISDOM participant and also part of the study team. I'm sorry to hear about your diagnosis, and all the stress and grief you've had to go through. I hope some passing of time has brought some solace. I wanted to follow up about your question: Although the study does not enroll people with a history of DCIS/breast cancer, I want to let you know about The Genetic Information Nondiscrimination Act (GINA) of 2008. It is a federal law that protects individuals from genetic discrimination in health insurance and employment. Should you ever want to pursue genetic testing in the future, GINA prevents employers from making job-related decisions, such as hiring and firing, based on genetic health information. In addition, it prohibits health insurers from determining the eligibility, cost, coverage, or benefits of a health insurance policy based on an individual's genetic information.
I hope this information is helpful to you and others who may read this post.