Amy Byer Shainman, also known as BRCAResponder, is a patient advocate, author, and producer who provides support and education related to having a pathogenic variant in BRCA1/2 or other cancer predisposition genes. We connected with her ahead of National Previvor Day and Hereditary Breast and Ovarian Cancer Week. Amy’s sister was diagnosed…
Previvor: A person who has not been diagnosed with cancer, but has survived the predisposition, or higher risk, due to certain genetic mutations.* Breast cancer. Spoken in hushed tones, these scary words are often compounded by the aftermath of breast cancer deaths, creating a stigma around discussing breast cancer in regular conversations. With…
As a clinical genetic counselor, I saw many cancer survivors for genetic counseling. In some cases, it had been 30-40 years since they were diagnosed. Some of them were in their 60s-70s when I saw them, but they were young at the time of their cancer diagnosis. Years later, they were referred to me to talk about the possibility that their history…
My story begins more than 9 years ago, when my father called me to say was having genetic testing. His cousin had just been diagnosed with ovarian cancer and had a known BRCA mutation. Many people I’ve spoken with have no idea that they can inherit this from their father, but I did. It is vitally important to meet with a genetic counselor before…
Editor’s Note: We are re-posting Theresa Smith’s entry to tie in with National Family History Day on Thanksgiving in two weeks in the U.S. Theresa was kind enough to update her piece on the importance of sharing family history and genetic test results, as challenging as it may be at times. Check back here in two weeks…
What a perfect time to begin my story — we are in the middle of National Ovarian Cancer Awareness month, as well as National HBOC (hereditary breast and ovarian cancer) Week. I love when things line up like it was all meant to be… Things did not line up for me in October of 2012. While preparing funeral arrangements for my dad who…
When it comes to putting yourself first, I’d say to anyone else, ‘DO IT!’ particularly to someone who’s been through treatment for breast cancer, which is the equivalent of being put through hell and back. Truth be told, I need to practice more of what I preach. I often overextend myself on projects or requests made by others, and it’s…
I’ll be the first to admit, I don’t read many blogs or follow people’s cancer experiences on social media, but I do see the value in them. Networks built around cancer – whether through Facebook, Twitter, blogs or hosted communities – have a particularly active presence in healthcare social media. During the past few years, through Facebook,…
As a female genetic counselor, I can say I have counseled many men regarding their risk for hereditary cancer. I have seen the different reactions and responses they have had. I have looked for different information (from what I provided to females) to give to them, if it will help. I cannot say I have any idea what it is like to be a man going…
When you learn that you have a BRCA1 or BRCA2 gene mutation, there are naturally questions as to what this will mean for your ongoing medical care and what you will need to do differently. The initial conversation with your healthcare provider will likely include a discussion about the options available to more carefully screen…