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genetic testing

Hey Sis

What’s the 4-1-1: Genetic Testing

A major part of living your #breastlife is getting familiar with your girls, but how familiar are you? What’s the 4-1-1 gives you the tea on everything you need to live your very best life and empower you to get familiar with your lady bits.

 

Sis, have you ever contemplated genetic testing (a type of medical test that identifies changes in chromosomes, genes, or proteins)? It’s a powerful way to take charge of your breast and ovarian health that can 

  • Confirm or rule out a suspected mutation in your DNA or
  • Help determine your chance of developing or passing on a genetic disorder. 

While there can be significant benefits to the knowledge gained through genetic testing, we know this isn’t always easy, especially for women of color. We are not blind to the fact that there is mistrust in the medical system in part due to widely publicized experiments, and racial bias in the healthcare system. Before signing up for genetic testing, many Black women have to overcome deeply-rooted concern about the potential misuse of DNA results and mistrust of health research, which has not always benefited them and was sometimes conducted without their consent. We hope that learning more about the benefits of testing, what to expect, and which professionals to rely on throughout the process will help you make informed choices that are right for you.

 

Understanding Your Genetics is Important

 

When you want to be proactive about your health…

Understanding the basics of genetics—especially how mutations can lead to a higher risk of certain cancers—gives you better information about your overall health plan. About genetic testing. And about discussions to have with your healthcare provider.

 

When your family history indicates a pattern…

A family history of cancer may mean there’s an underlying genetic cause. Once you understand how genes and mutations work, you’re better equipped to work through your family history—and better equipped for conversations with your healthcare provider or a genetic counselor.

Your healthcare provider is likely to recommend testing if you have certain medically significant risk factors. If your personal or family health history includes any of the following (from the National Comprehensive Cancer Network), you should strongly consider testing.

  • Breast cancer by age 45
  • Breast cancer by 50 AND a close relative with breast or ovarian cancer by 50
  • Male breast cancer in your family
  • Breast cancer at any age AND two or more relatives with breast cancer at any age
  • Cancer in both breasts
  • Ovarian, primary peritoneal or fallopian cancer at any age
  • A close relative with a BRCA mutation or another mutation that increases the risk of developing cancer. 
  • Triple negative breast cancer

 

When you’re curious, or you want to fill in the gaps…

A complete family history means going back at least three generations. That’s not always possible, so understanding your own genetic makeup can help you—and your healthcare provider—work backward to fill in the gaps. And even if you’re simply curious about your own health, understanding your genetic risks is a proactive way to get a better overall view.

 

Asking the Right Questions

Finding someone to talk to is one thing, but being sure that you are asking the right questions… is another. Some questions that you should consider include:

  • Am I a candidate for genetic testing? Should I consider it?
  • Do you have any good ways to spark discussions with my relatives about our health history?
  • Based on my family history, what’s my chance of testing positive for a genetic mutation? What’s my projected risk for developing breast and/or ovarian cancer?
  • If someone in my family has tested positive for a known genetic mutation, what are the chances that I’m also a carrier?
  • What type of test do you recommend?
  • What’s our plan if I test positive, negative, VUS?
  • What type of cancer screenings do you recommend for me if I decide not to get tested?

We’ve gone ahead and created a full list of questions to help guide your conversations with your healthcare provider or genetic counselor.

At the end of the day, the more you understand about your personal risk for breast and ovarian cancer, the better equipped you’ll be to make the healthy choices that are right for you. So you can live your best life.

Bright Pink founder, Lindsay Avner with Education Ambassadors Cailtin Lopez and Brittany Whitman
Personal Stories

A Bright Pink Education Ambassador’s Story: Caitlin Lopez

Interested in making a difference in the lives of young women? Become a Bright Pink Education Ambassador or PinkPal today. Read on for Cailtin Lopez’s story.

In my family, the only known case of breast cancer was my maternal grandmother when she was around 50 years old. She had a single mastectomy with no reconstruction and that was it. However, my gynecologist advised that I should consider genetic testing because of my family history of other cancers. My mother was tested first and when she received her results I immediately went in for testing. It was then that I discovered I am BRCA+.

I met with a genetic counselor and we discussed all of my options for prevention and early detection such as surveillance, medications, and surgery. She also introduced me to Bright Pink and suggested their PinkPal program which matches young women who are at high risk for breast and ovarian cancer with fellow high-risk individuals. I immediately reached out and received a PinkPal. I was partnered with a wonderful woman who had been in my exact situation. She helped me feel confident, answered all of my questions, and made me feel at ease. Cailtin Lopez with her Bright Pink T-shirt

After my PinkPal helped me realize that I would be OK, I made a decision and a life plan of what I would do in regards to my BRCA+ status; I went through with surgery. After I recovered, I decided I was ready to support others.

I received a PinkPal in 2013 and I became a PinkPal in early 2014. It was important for me to provide that comfort for other women that my PinkPal provided for me. It’s nice to know that you have a support group when you’re going through something that affects your life so much.

I wanted to continue my journey of volunteering with Bright Pink so I attended Bright Pink University, a training program for volunteers, in the summer of 2014. There I learned how to present the Brighten Up Educational Workshop, which is a 30-minute presentation that covers the basics of breast and ovarian health, introduces the idea of different lifetime risk levels, and provides early detection and prevention strategies.

Completing Bright Pink University was one of the greatest things I have ever done. Not only has it been beneficial for me, but for others in my family and community as well.

I remember being nervous while waiting to present my first Brighten Up Workshop. It was at St John’s University in Queens. The group was really positive and asked lots of great questions.  I’ll never forget that group – and I have educated new groups at St John’s University every year for the last three years. They always welcome me with open arms.

Being informed is an important factor in order to be in control of your health.  I am honored and happy to be a part of an organization, like Bright Pink, that helps empower people to be proactive and teach them to take knowledge and turn it into something wonderful.

Caitlin Lopez after presenting a Brighten Up Workshop

While a goal of mine is to educate as many women as possible, I’m a huge fan of smaller groups too, because women (and men) tend to ask more questions, share their stories, and feel more connected. I love the feeling of helping women understand that they have control over their health and can choose to be proactive.

Empowering women is something I am truly passionate about.

Becoming a Bright Pink ambassador has empowered me and I love the fact that I can help people dig into their family history and question their doctors. I always want to help others, especially women, and Bright Pink helps me accomplish this. My own family health history and personal genetics push me to help others realize that they are in control of their health and they don’t need to be afraid of their genetic testing results. I want everyone to know they can help themselves and their families and choose to be proactive.

 

Caitlin was inspired to volunteer with Bright Pink because of her genetic testing journey and her drive to empower others.  Find out how you can make a difference in the lives of young women. Become a Bright Pink Education Ambassador or PinkPal today.

 

 

Carrie's family
Personal Stories

“My mother’s strength inspired me to face my fears”

On January 29th, 2007, my mom sat my brother and I down and gave us some news that would change all of our lives. She had breast cancer. She said everything was going to be okay, it wasn’t going to be a big deal, and she wasn’t even going to lose her hair.

Then her doctors found more cancer. Ultimately, she was diagnosed with stage 4 breast cancer which had spread from both breasts to her lymphatic system. After a fierce, courageous, and exhausting battle with chemo and radiation, the removal of her breasts and ovaries, and finally reconstructive surgery, my mother is incredibly blessed to be cancer free, a fate that not many stage 4 patients achieve.

Even after dealing with everything she did, my mom is still incredibly full of life. She is loving, considerate, and loves to be around family and friends, whether it be getting together for a holiday or just to watch the latest season of The Bachelor.

After my mom reached 5 years cancer-free, I was under the impression that the impact that cancer had on my life would finally be a thing of the past. This was until I went to my school’s health center freshman year of college and the doctor asked about my mom’s cancer, specifically whether she had a genetic predisposition to breast cancer.

It was in that moment that the doctor hijacked a conversation that my mom had been preparing to have with me for 5 years.

As it turned out, my mom did test positive for genes that are correlated with breast cancer, meaning that I also may have these same genes. It has taken me quite a while to process this information and what it could mean about my lifestyle and my health. For years, I’ve been too scared to do genetic testing. The initial fear came from the shock of learning that my mom had the gene.

I have grappled with the idea of genetic testing for a while and have now decided that I am ready to accept the results, regardless of what they are.

This summer I set a goal: I would run the 2017 Bank of America Chicago Marathon to show myself that I can live the healthy lifestyle that I would need if I found out I have the genetic predisposition (but even if I don’t, it’s always good to be healthy!) Once I complete the marathon, I will do the testing.

I have wanted to run the 2017 Bank of America Chicago Marathon ever since my senior year of high school. It has always been an influential part of my upbringing, whether it be by cheering on my father while he ran when I was a kid, or volunteering as a high school student giving water to the thousands of runners who passed in front of me. After four years of volunteering at the race, I decided that it’s finally time to run the race myself.

I knew I wanted to run for charity and the first organization I looked at was Bright Pink. I immediately knew it was the one for me, not only because of my family’s experience with breast cancer, but because Bright Pink’s mission is so aligned with my own beliefs and experience.

I want to empower young women by sharing my story and my journey while preparing for the marathon and show the importance of living a healthy lifestyle and being proactive to prevent breast and ovarian cancer.

To be honest, I’ve been afraid of getting genetic testing done since my mom’s diagnosis. But her strength has inspired me to take the necessary steps to be proactive about my health. Running a marathon won’t be easy, but I know that once I’ve finished it, I’ll feel strong enough to take on whatever comes next.

 

 

Carrie was inspired to change her lifestyle and learn more about her genetics because of her mother’s cancer diagnosis and genetic predisposition. This Mother’s Day, #GoAskYourMother about your family health history and learn more about genetics at ExploreYourGenetics.org.

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