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 …
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 …
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 …
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 …
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 …
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 …
I was diagnosed with breast cancer in December of 2013, and soon after learned I had inherited a gene mutation that was passed on from my father’s side of my family. This overwhelming news was cause for great concern as much of what I had just learned was a lot to absorb. I was the first in my family to be tested for BRCA1/2 gene mutations even …
For a woman being diagnosed with a BRCA2 gene mutation, there is a ton of information specific to cancers for women, but what if you are a man? The amount regarding male breast cancer, hereditary prostate cancer, and hereditary pancreatic cancer is limited. In addition, public awareness about these conditions is limited. Considering …
While it’s difficult for anyone to come to grips with a cancer diagnosis, it becomes more challenging having to share the news with family and friends. Especially when you are a man telling them you have breast cancer. People may look at you with a deer in the headlights stare….men get breast cancer? This was the reaction from many, as …
It was a year after I had tested positive for the BRCA2 gene mutation before I found out about the status of my three children. My oldest, my son, and my youngest daughter were both negative (huge relief). My middle daughter, Jenna, unfortunately tested positive for the same mutation I have. She is 23 years old now and is graduating …
When I was a clinical genetic counselor, I met with many men who had been diagnosed with breast cancer for genetic counseling and genetic testing. Counseling male breast cancer patients about genetics was often very different for me than counseling female breast cancer patients. I think the main reason for that is men and women are different and …
Cancer is a difficult and tricky disease that tries to destroy us but now we are better prepared to fight back due to a stronger understanding of the disease. Cancer does not discriminate. As a male, the day I learned I had breast cancer was one of total disbelief and overwhelming shock. A diagnosis I was not prepared for. Sure, I knew men …
Dealing with your own BRCA1 or BRCA2 genetic testing results is one thing, but worrying about testing for your children is another. Especially when they are under 18 years old. There is a very real possibility that people will have to wait for years for their kids to find out if they are positive or negative for the mutation. There …
After testing positive for a mutation in my BRCA2 gene, I was on high alert. I rushed to all my doctor’s appointments and gathered a lot of information regarding preventive surgery options. I also did a lot of research on the statistics and newer medical studies regarding BRCA1 and BRCA2. I evaluated everything based …
My mom was first diagnosed with breast cancer in 1989, when breast cancer was still whispered about and long before Angelina Jolie put genetic testing on the Hollywood map. My mom complied with the treatment recommended for her at the time, which included a lumpectomy, chemotherapy and radiation. Eighteen years later, in 2007, I was 34 years old …
I did finally come to terms with my decision to have a preventive bilateral mastectomy to lower my risk of breast cancer from my BRCA2 gene mutation. I was scheduled with my surgeon, but I was put on a rolling schedule, which meant my date was not set in stone. I asked at what point I got to keep my surgery date, instead of my date being …
The funny thing about ‘healthy habits’ is that you can do everything ‘right’, but there are no guarantees in life. For me, breast cancer is hereditary. he·red·i·tar·y Something (like a health problem, like cancer) that is due to inherited genetic changes (mutations), which can be passed from parent to child. I have a BRCA1 gene …
Our "BRCA & Beyond" blog continues to be a place where we discuss and share information about important topics surrounding BRCA1/2 mutations, and we hope you find it helpful. For this post, I wanted to share some scientific background with you about what it actually means to have a BRCA1/2 (often referred to as "BRCA") gene mutation that …