Deenya Craig’s experience with myGenetics – a DNA testing community research study launched by HealthPartners in partnership with Helix – started with, literally, a sign. “I was thinking about the myGenetics study for a while. I just didn’t know what it was called. I had family members that had breast cancer, and I was curious if there was something in our DNA … one day, I saw a big sign (at HealthPartners) that said ‘genetic testing,’ and I thought, ‘This is it. I’m going for it.’ I asked the lab (tech) about it (and) they told me where to go. I went into MyChart, signed up, and the rest is history.

“(The whole process) was very straightforward. It was easy to find. I read through all of the disclaimers and all of the information … (about) the genetic counsel follow-up that would come as part of the study. The other intriguing factor was that it was at no cost to me. So that was another huge factor for going forward with the study and knowing that I would have someone to talk over those results with afterwards.”

After her test, the results came through to Deenya’s MyChart: Something was found. While meeting with a genetic counselor and discussing her family health history, she found out that she was positive for the BRCA2 gene mutation that brings a greater risk of breast and ovarian cancer. Her genetic counselor talked through what that meant and what her choices were. Almost automatically, Deenya and her family all decided she should have a preventive mastectomy.

After getting her results and taking action, for Deenya, “it almost feels like literally a second chance at 51 to move forward in life and say, ‘hey, whatever’s going to happen in my life, chances are it’s probably not going to be breast cancer. I mean, I could lose a toe or something, but it won’t be this.’ And, granted, those numbers, it’s not 0, but my odds from being 75%, 80% down to 5%, I’ll take it, especially given my family history.”

In today’s Off the Charts, Deenya talks about overcoming the hesitation and fear that can come from a screening, including family in health conversations, and how her experience became the spark that also gave lifesaving information to her daughter. Listen to the episode or read the transcript.

Preventive screenings: Overcoming hesitations and fear

Talking about the DNA test Deenya took as part of the myGenetics study, she didn’t have any hesitations or concerns about giving access to her genetic information. “I think if you want answers about your health and you’re serious about living your best life and being able to make decisions on your terms, someone else that is smarter than you that knows how to read this information has to have access to it to be able to give you answers. They’re the experts, so I had no concerns.”

Deenya also understands that there are issues with trust, especially when it comes to health care. “Being a black woman, coming from the things that we know about and hear about in our history with medicine, there is definitely a valid reason in the past for mistrust.”

However, as Deenya saw with the myGenetics study, they weren’t having her take anything like a medicine, they were just taking out a sample of something replaceable. “The process of drawing blood or having a saliva swab was very familiar for other things,” like checking for hemoglobin levels or to see if you have the flu. “(For) the myGenetics study, the process for giving them the DNA was about the same thing … they weren’t coming with something like, ‘We’re going to take two toes and a finger and then we’ll give it back to you patched up.’”

And when it comes to the fear of getting a preventive screening, Deenya sees it less as opening yourself up to bad news and more as a way to empower yourself with knowledge and time. “I haven’t met anyone that said, ‘I want to live in pain and agony, and I want to go through sickness’ … the point of early intervention and education is you’re catching it before it starts.”

And with her preventive surgery and post-operation support, Deenya is equipped with everything she needs to take action: “If, for some reason, I end up with something … now I know what to look for, I know who to go to, I know what doctors to call, and I know what treatment options are available before it even starts. So, for me, it’s about quality of life.

“I have a saying … you don’t know what you don’t know, and you can’t fight a disease or an enemy that you can’t see or have knowledge about … if there’s something out there than can help you figure out in advance that you might be dealing with something that you can get a jumpstart on, you’re buying your time. Even if you decide to do nothing, you’re buying your time and you’re able to plan out your time. So, I think it’s important to know and get that information.”

Including family in health care conversations

Health care can be a sensitive topic for many, especially when it comes to personal privacy and talking about conditions with family and friends. As Deenya talks about her personal experiences during the podcast, “health care is very private to a lot of people, and I’ve had (to be) present with a lot of family members and close friends at their last breaths and shortly thereafter. And one thing that has been consistent is that … the family that’s left behind is always surprised by the medical information they didn’t know. And they’re stuck with the agony of ‘If I had known, could I have helped them through this? Was there a treatment? Was there a medicine?’

“I think that’s the biggest part that people forget about their health care – while it is your own, you don’t live to yourself. And when you’re gone, you’re gone. And the people that are left behind that care and love you are stuck with all the secrets that you’ve kept and all the things that you did or did not do with your health. So, you have the ability to pass that on so that other people that love you and care for you aren’t wondering and left holding the bag.”

And it applies to more than myGenetics: It also includes any kind of screenings, tests and preventive care. Getting that information and sharing it with your loved ones can start the conversation early when it’s most effective, rather than at the end.

Deenya also adds, “People think that by not knowing or not telling that they’re helping their loved ones because they don’t want them to worry.” In reality, “you’re gone, and they’re left with the counseling and the grieving and the wondering and the blame. It’s amazing to me, to sit with family after a loss and hear them feel like they’re responsible for not doing something more.

“(For those) that are unsure or unwilling or don’t think there’ll be any value in (getting a DNA test) … the first takeaway is not even how much do you love yourself, but how much do you love the people that are connected to you? For me, if you really say you love your kids and you want the best for them, then you don’t want them to suffer or to go without knowing. Even if you’re okay with your disease or your genetics or your sickness, what about your children? Because they deserve to know. Your family deserves to know.”

Lifesaving information for Deenya and her daughter

While Deenya’s DNA test provided critical information for her own health, it also inspired others to take action. “I put a story on my personal Facebook page that put it all out there. I said, ‘Hey, I’m having breast surgery. I’m going through this. I’m BRCA2 positive’ … I had people message me. If they have my number, they texted me. And it was a chance for me to give them a mini testimonial: ‘Go get this done. It’s important to find out.’ And so, with that, people said ‘Oh, I was kind of curious about that, but I didn’t know.’ And I said it was absolutely worth it.”

But for Deenya’s oldest daughter in particular, this motivational push potentially saved her life. Shortly after Deenya’s breast surgery, her daughter found out that she’s also BRCA2 positive. “Because she’s childbearing age and has one son, she’s making decisions that are different from the ones I made. I encouraged her to meet with the genetic counselor because she thought that she had already heard it all with me. I said, ‘no, you have different DNA. Your dad is not my dad, so you need to go and see what they say.’ And she’s glad that she did because her and her husband are making different life choices based on that information.”

As a result of her own experience, Deenya’s daughter has also been very vocal about myGenetics at her own job. She tells her co-workers, family and friends that the test potentially saved her life – and that if her mom had never had her own test, shared her results and encouraged her own daughter to also get tested, she may never have found out herself.

“She (also) knows the family members that have dealt with breast cancer and other cancers, like the family member whose funeral is tomorrow that passed from pancreatic cancer, another BRCA2 correlation.”

For Deenya and her family, behind all the testing and action taken, it all comes down to being there for each other. Deenya’s daughter told her that growing up with her grandmother her entire life was important to her, and that she wants that for her son as well. Seeing her grandchildren grow up, graduate and step into adulthood is something that Deenya also lives for.

“I don’t want to be ridden by a sickness that I had from birth, that was in my DNA, that I could have changed or had options to change … to give me more quality time with my grandkids. I would do this test a thousand times again if that meant that it would give me even one additional year with my grandkids. It is all worth it.”

To hear more from Deenya, including more about how she shared the news with her family, how it opened up conversations in her family about health and the future, and her wish to pass down the gift of life with choice to her children, listen to this episode of Off the Charts.