Finding out if you have the 'cancer gene' can be an emotional journey

Today's technology makes certain things extremely easy, including the process to find out if you have the gene mutation that could lead to breast cancer.

KUSA - It's the information age and almost any answer can be found with the click of a mouse.  Now, thanks to the magic of science, information about your health is easier than ever to obtain too.

A company called Color is helping people learn more about their genes. Specifically, gene mutations that can indicate a higher risk for cancer.  It just takes a little spit in a tube and a stamp or two.

A few weeks after you mail in your DNA a genetics counselor will reach out and let you know whether you have the BRCA 1 or 2 mutation.

If you do have a BRCA mutation, it could mean you're at a higher risk of developing breast cancer in your lifetime.

Molly Zwerdlinger lives in Denver. Both she and her brother, Jake, have a BRCA2 mutation.

Molly's doctor said she has an 86-percent to 90-percent chance of getting breast cancer. 

“At that point, you don’t even know what to say. How do you even respond to that? It’s like someone telling me: You’re going to get cancer. They gave me a crystal ball and they said to me ‘you’re going to get cancer,’” Molly Zwerdlinger shared.

She said, to her, it felt like a death sentence.

“It’s like having two little bombs in your body and you have no idea when it’s going to go off and you can’t see the timer, but you know that something is going to happen. So I was definitely depressed and shut down for a few months, in absolute panic. My doctor said to me ‘you’ve got to get control, it’ll make you feel better to take control of the situation," said Molly. "My DNA is sick and that’s the hard thing, no one can see that, but you can feel it, you can feel panic.”

After accepting her new reality, Molly began getting health screenings.

Every six months, she gets a mammogram and breast MRI as well as a skin check at the dermatologist because the BRCA2 mutation increases her risks of other cancers as well. Despite all the new screenings she now does, and the worry that still fills her head every day, she says it’s worth it. Knowing her risk helps her prevent it.

Her brother, Jake, says he got tested so he would know what genes he might pass to his children someday.  He says before that, he'll want the future mother of his kids to get tested too.

According to Lisen Axell, a genetic counselor at UCHealth Hereditary Cancer Center, having a child can be risky for two parents who both have a BRCA2 mutation.

Their child could be born with Fanconi Anemia, a potentially fatal disease that affects the bone marrow, much like leukemia.

People who have this disease usually only live to be 29. The child then has a 25-percent chance of getting it if both parents have the BRCA2 mutation.  

Even though it’s not often talked about, men can develop breast cancer.

Jake hopes this knowledge encourages men to consider genetic testing. He says there’s no shame in carrying the so-called ‘breast cancer gene.’

“It just really makes you more aware of your surroundings and what you’re doing to your body to prevent things in the future. It shouldn't be something you’re embarrassed about or anything like that. It’s part of your health, so it’s something you should always be cautious of. There’s no stigma around it or some label you wear, no patch on your arm once it’s something you find out you have,” said Jake.

Before you consider genetic testing, you should talk with your doctor.  He or she can tell you if you are a prime candidate.

Axell says, generally speaking, people should consider genetic testing if they have a family history of relatives developing cancer at a young age.

If your doctor recommends the test, your insurance might cover it. If not, you can order a relatively cheap at-home kit at Color.

The site will send your results to your doctor who can then guide you and help you come up with a proactive plan to prevent cancer. That’s what Molly is doing.

“They call us ‘previvors,’ and the goal of our doctors and oncologists is to keep us previvors, and not turn us into survivors. The goal is that we just never end up getting cancer and do things to make sure that doesn’t happen,” Molly said.

The experts at Color agree that if you decide to get tested, you need to be mentally prepared. 

Even if you find out you don’t have a gene mutation, you could still get cancer. Genetics only play a small part. That’s where your doctor’s guidance comes in.

“I wish I would have known what my life would be like before I decided to take the test," said Molly. "I would want people to know: before you test, talk to people who have done it and are living it because you don’t know what your life is going to be like until you see it potentially through someone else’s eyes. I wish I had known that.”

© 2017 KUSA-TV


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