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Genetic Testing

Would You Remove An Organ To Save Your Life?

What if you could dramatically reduce your likelihood of developing cancer? Would you do it?  

I’m not talking about lifestyle changes―things like avoiding processed sugars or eating plenty of garlic, though I’m sure we could all benefit from both―I’m talking about concrete proof that you will develop cancer. And concrete proof that you can do something about it. I’m talking about genetic testing.

Also known as DNA testing, genetic testing is used to determine a patient’s potential risk of developing an inherited disease. Thanks to advances in modern medicine, these types of tests have even been used to determine a patient’s likelihood of developing cancer-based on several genetic indicators, or mutations. Once the testing process is complete, the patient and their physician can work together to develop an individualized healthcare plan based on the needs of their genetics. This might include lifestyle changes, specialized hormonal medications, or even the removal of an organ, all of which could prevent cancer from ever forming.

The most famous case of this is Angelina Jolie, who used Myriad’s MyRisk Hereditary Cancer test back in 2013 to determine her risk of developing cancer. “A simple blood test had revealed that I carried a mutation in the BRCA1 gene,” she said in a New York Times article. “It gave me an estimated 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer.” These test results led her to remove both breasts―a preventative double mastectomy―as well as her ovaries and fallopian tubes, thereby eliminating her chance of developing both cancers.

Genetic Testing

Family History

 

For me, genetic testing has always seemed like a necessary component required to keep myself healthy and cancer-free. Both of my grandparents on my mother’s side were diagnosed with colorectal cancers when I was just 11 years old. After the diagnosis, my Mother and her sister were thrown through a whirlwind of doctor’s visits and chemotherapy appointments.

Though most of the caretaking responsibilities fell onto the shoulders of my mother’s sister― we lived out of state at the time―the process was hard on our entire family. It was painful to watch both of my grandparents’ hair start to thin while listening as their hope dwindled in the months before their final days.

After fighting the disease for years, they passed away within 10 months of one another. I was devastated. Even then, at the young age of 11, I wondered why there wasn’t more that could be done to lessen the likelihood of developing this horrible, ruthless disease.

Now, some twelve years later, genetic testing can be used to do exactly that and I planned to try it out first hand, using the very same test that Angelina Jolie used. Myriad is one of the main players in the genetic testing industry, and their MyRisk test has become one of the most popular tests in their testing arsenal.

Genetic Testing

 

To Test Or Not To Test

 

“We are committed to offering high-grade clinical grade testing,” says Johnathan Lancaster, the chief medical officer at Myriad. “[The MyRisk Test] is the largest, and most widely used, cancer genetic testing service in the world today, and it’s the most accurate.”

Throughout my interviews with Dr. Lancaster, I learn that the MyRisk Hereditary Cancer test is a 28-gene panel that identifies a patient’s potential risk of developing eight hereditary cancers such as: breast, endometrial, prostate, melanoma, pancreatic, colorectal, gastric, and ovarian cancers. Mutations in each of the 28 genes examined in the Myriad testing panel links to one (or all) of the eight hereditary cancers mentioned above.

“You’ve heard of personalized medicine? That doesn’t exist without these types of tests. They inform the decisions that make personalized medicine possible, or precision medicine possible. This is really enabling that whole industry. We’re hopeful that in the future, this one size fits all approach to medicine goes away and we treat individuals based on their unique characteristics.” – Ron Rogers | Vice President Of Corporate Communications | Myriad

Though a positive MyRisk test result doesn’t necessarily mean you’ll develop cancer over the course of your lifetime, it’s incredibly accurate in determining whether you are at a higher risk of potentially developing a hereditary cancer. And for many, this information alone can be a lifesaver.

For three years, Dr. Lancaster, board certified in obstetrics and gynecology as well as gynecologic oncology, and an expert in personalized medicine, has been a crucial leader at Myriad. Upon meeting him, one of my first questions was whether or not he has taken the MyRisk test himself

“There was no cancer in my family” he says, “and we don’t have any of those red flags.” Because neither he, nor any of his immediate family members have a history of cancer, it isn’t necessary to undergo testing, he tells me.  

Currently, the MyRisk Test is only intended for people who meet medical guidelines―or red flags―set in place by the National Comprehensive Cancer Network (NCCN). Red flags include things like: a family history of metastatic (or rare) cancers, or a cancer diagnosis in a family member under the age of 50. Dr. Lancaster even mentions that being of Ashkenazi Jewish descent would likely make someone an excellent candidate for the test.

To best determine if you are a candidate for such testing, Dr. Lancaster recommends visiting with your primary care physician and coming equipped with a comprehensive knowledge of your family’s medical history.

“We’ve now tested two and a half million patients since the company opened,” says Dr. Lancaster. “The vast majority of patients who carry one of these mutations don’t know about it. In fact, probably 95 percent of people who carry one of these [genetic mutations] doesn’t know about it.” He adds that simply raising the awareness of any genetic mutation helps to reduce the likelihood of a cancer diagnosis later on because doctors are able to make more personal decisions in regards to preventative care.

“What we do saves lives,” Dr. Lancaster says. “I’m not being dramatic. If a woman is found to inherit a gene that causes breast cancer―one of those 28 genes―she has up to an 85 percent chance in her lifetime of developing cancer.”

I was astounded by those statistics and I couldn’t help but wonder if this test would have prolonged the life of my grandparents, or at least provided them with alternative treatment methods. If a simple test had this kind of power, why wouldn’t you take it? I knew I wanted to.  

I spent the next few weeks in talks with Myriad team to determine if I was a candidate for the test. Though both of my mother’s parents died due to complications of colorectal cancers, I didn’t carry any of the other red-flags. Based on my family history, I was not a candidate for the MyRisk test under NCCN guidelines.

While most people would be elated that they didn’t have to worry about testing, genetic mutations, or an increased likelihood of a cancer diagnosis, I actually found myself disappointed. I wanted the ultimate “inside-scoop” on my genetics, how could I get that without taking this test? Myriad’s MyRisk test was an important component in my quest to stay healthy and cancer-free over my lifetime.

Fortunately, after many long conversations with the Myriad team, they agreed to give me the test at their headquarters in Salt Lake City. Naturally, I was terrified to go through the testing process. During the months leading up to the test, my mind was filled with thoughts like: what if my tests are positive? And would I have to remove one of my organs to further reduce my risk if I did test positive? There was only one thing I knew for sure, no matter my results, my lifestyle would be dramatically affected.

Genetic Testing

 

The Reckoning

 

Giving me―an unqualified patient by NCCN guidelines―the MyRisk test was something out of the ordinary for Myriad. Unlike other patients taking the test, I did not take the test in a physician’s office, or seek the counsel of my physician to determine if the test was even necessary.

Instead, I took my test inside the office of Ron Rogers, the executive vice president for corporate communications at Myriad. Despite the unconventional nature of my testing circumstances, Mr. Rogers assured me the process would be painless and my results would be perfectly accurate.

Only moments after Mr. Rogers’ assurances, he ripped the cardboard label off the testing kit and passed me a plastic vial to fill with saliva. I spent the next few minutes, sitting across the table from Mr. Rogers, working hard to fill the vial with enough saliva needed for processing. It was an exhausting process―especially with an already dry mouth―but after a few more minutes, I was done, and my DNA was sent off for testing.

A mere two weeks―though it felt like an eternity―after I sent my tube of saliva off for testing, I received my results back. Because my experience was unconventional, my results were delivered directly to me via email, instead of first being delivered to my physician.

I sat staring at the email attachment for a few moments before I could finally muster the courage needed to open it. When I did, I was relieved to learn that I did not carry a genetic mutation known to cause hereditary cancers. I did, however, carry a heightened risk of developing breast cancer over my lifetime.

Though I was absolutely relieved that I wasn’t genetically predisposed toward cancer, I began to wonder what I would have done if my test results had come back positive. Not only that, but what was I supposed to do about my increased risk of developing breast cancer? Would I be willing to do anything crazy, like removing a bodily organ, should it be a necessary preventative measure?

“What we do saves lives.  I’m not being dramatic. If a woman is found to inherit a gene that causes breast cancer―one of those 28 genes―she has up to an 85 percent chance in her lifetime of developing cancer.” – Dr. Johnathan Lancaster | Chief Medical Officer | Myriad

For example, Ms. Jolie’s test results had revealed unfavorable odds. Because of that, her physicians recommended she remove several organs as a preventative measure. After her surgeries, Ms. Jolie’s chances of developing breast cancer dropped to just under five percent.

“[Ms. Jolie] underwent a bilateral mastectomy and bilateral salPingo oophorectomy,” says Dr. Lancaster. “Meaning, both breasts were removed with reconstruction and then taking out the tubes and ovaries. Both of those surgical interventions massively reduced her risk of developing cancer.”

Keeping Ms. Jolie’s statistics in mind, I decided that had I received a positive test result, I would have done whatever possible to lower my lifetime risk of developing cancer. Including removing one of my organs, should a physician find it necessary. Like Ms. Jolie, I knew that I would rather live without an organ if it meant that the removal could later save my life or at least some of the pain associated with cancer treatment.

While my test results didn’t condemn me to the operating table, I still carried a high lifetime risk of developing breast cancer. Mr. Rogers and Dr. Lancaster advised that I discuss the results with my physician so we could best determine a “prevention plan” to effectively lower my breast cancer risk.

Genetic Testing

 

Personalized Medicine

 

For me, my prevention plan included things like getting my first mammogram before the American Cancer Society recommended age of 40, receiving yearly health screenings, as well as promising (hopefully not in vain) to regularly exercise and avoid excessive alcohol consumption. This was the first time I had a personalized preventative healthcare plan based on my genetic needs and it felt truly incredible.

While that was the prevention plan that worked best for my individual needs, Dr. Lancaster tells me that there are other prevention methods out there for other patients, each as unique as they are. “[Surgery] is the single most effective intervention today that we can offer,” he says. “The second thing is we can do surveillance by keeping a very close eye on patients with all of these new ultrasound and imaging technologies. And then the third thing is there are actually medications that can reduce risk.” He points to hormonal birth control for women and things like PARP inhibitors.

He also adds that no matter your test result, the MyRisk test is instrumental in providing physicians with the information needed to create personalized treatment plans. Not only will physicians become more aware of an at-risk patient, but the test allows them to make informed, accurate decisions regarding potential diagnosis and treatment plans.

“You’ve heard of personalized medicine?” Mr. Rogers asks me. “That doesn’t exist without these types of tests. They inform the decisions that make personalized medicine possible, or precision medicine possible. This is really enabling that whole industry. We’re hopeful that in the future, this one size fits all approach to medicine goes away and we treat individuals based on their unique characteristics.”

And they’re right. There’s nothing more personalized than creating a healthcare plan with your physician―one that may or may not require the removal of an organ―based on the needs of your own DNA. After all, genetics don’t lie.

Models are Ballet West II Artists Severina Wong and Noel Jensen.