As journalists, we cover a wide range of stories. Some inform you, break your heart, bring joy or bring inspiration. As they stick with you as a viewer, they also stick with me as a storyteller.
One medical story moved me so much that I thought I should get checked out.
You may remember back in October 2022, Breast Cancer Awareness Month, I covered a Royal Oak woman who discovered she had breast cancer when her newborn refused to latch for breastfeeding.
That mother, Ellen Rabideau, already knew she was at high risk for diagnosis and consistently gets screened, so she was able to make an appointment with her specialist and they caught it early.
The reason she knew she was at high risk was that at 18 years old, after two of her aunts died from breast cancer, Rabideau and other women in her family did genetic testing. Rabideau tested positive for the BRCA gene mutation as well as her mom and seven out of nine of her cousins.
As a young woman who has grandmothers on both sides of her family who’ve battled breast cancer, I was blown away that there was a process that could tell whether you were at a higher risk for breast cancer. It got me thinking, if I didn’t know this was an option, a goldmine of a resource, how many other people didn’t know either, that’s why I decided to share my journey with you.
Both my grandmothers, multiple great aunts, and family friends all have had breast cancer, some even died from it. I often thought it was only a matter of time before I get it too and that there wasn’t anything I could do about it, but this testing changed my perspective. It made me think that instead of being reactive about breast cancer, I could be proactive.
As nervous as I was to begin the process, I felt that this would give me a fighting chance because I felt like my Grandma Johnson, my grandmother on my mom’s side, didn’t have a fighting chance. She beat breast cancer when I was just a little girl, same with my grandmother on my father’s side. Growing up, every so often I would go with my mom to her mammogram appointments, but no one really talked about cancer and what it had stripped away from my family in the past.
Then when I was in high school, my Grandma Johnson had to face breast cancer again, but this time it had spread to her lungs, spine, and brain. As my mom became a full-time caretaker, my grandmother would sleep over at our house for days at a time.
After I got my driver’s license, I would help when I could, even some weekends and school breaks staying at her house so she would be able to sleep in her own bed. Somedays I would help bathe her and she would show me every procedural scar. I saw them for what they were: battle wounds. She died in 2010. I was in the 11th grade.
It was heavy for a teenager, and as an adult, I recognize how much I’ve carried the worry of going through the same thing with me. That’s why finding out whether I’m at a higher risk for breast cancer diagnosis is not only proactive but healing too.
After making the appointment with Corewell Health’s cancer genetics center I was given extensive family history paperwork to complete. Names and ages of parents, siblings and grandparents was simple. Then there were questions about the age they were diagnosed with cancer, the age they were when they passed away, if they’ve ever had colon polyps and not just my immediate family members, but great aunts and uncles too.
My mom helped me. We called family states away, we even had to search through my mom’s obituary archives that date back decades. The conversations were uncomfortable and at first, some family members really didn’t want to share that information. It was the most I’ve ever had to prepare for a doctor’s appointment.
We learned that my maternal grandmother has three siblings who had either breast cancer or prostate cancer. Her grandmother also had it. I returned all that completed paperwork before the appointment.
Before this process, I assumed genetic testing would be expensive but as the cancer genetics center notes on their website: 90% of patients with insurance and a family history typically pay no out-of-pocket costs.
Before I saw any doctor, I met with genetic counselor Alexis Gallant who took me step-by-step through the test.
“We can use this information, to take care of you better so we can do things proactively if we know you are born with an increased risk for certain cancers then we could increase your screenings and stuff like that,” Gallant said.
She also explained what genetics has to do with cancer and how some cancers can be hereditary like breast, ovarian and prostate cancers.
“We have a specific set of genes that are called cancer genes and typically their job is to protect you from developing cancer but sometimes people can be born with a change in a gene so basically you can think of it as a spelling change so missing letters, extra letters,” Gallant said.
Those changes could mean that gene doesn’t work properly so instead of protecting you from that cancer it could put you more at risk. To screen for it the genetic cancer center draws blood and sends that to a lab.
“We actually test for 47 genes that are associated with cancer so it’s basically going through all of these and spell-checking them,” Gallant said.
After that, I met with Dr. Dana Zakalik, director of the cancer genetics center. She took interest in what previous doctors would brush off, asking whether my mother had ever been told if she should do cancer genetic testing. I explained that my mother had never even heard of the BRCA gene mutation and that when I brought up getting this genetic testing to my doctor she told me I didn’t need to because my mom or aunts were cancer free. It didn’t come as a surprise to Dr. Zakalik.
“Among Black women, breast cancer tends to be more aggressive, it gets diagnosed at more advanced stages and tends to have a worse prognosis,” Zakalik said. “We try to calculate women’s risk of breast cancer based on hormonal factors and family history and that, I don’t believe is being done as commonly for Black women as it is for other women. There’s no doubt that access to screening leads to early detection and if you don’t have that same level of access, you won’t be diagnosing the cancer at such an early stage.”
She says they are working to get the word out to patients to be their own advocates while also educating others in the medical field.
“We’re really trying to raise awareness to our medical students and young doctors to take down family history and know genetics, but we want women to be equal partners in their healthcare and be aware and be educated on the screening tests that they know and hear about for early detection,” Zakalik said.
Men are no exception when it comes to this type of genetic testing, especially Black men.
“For Black men, prostate cancer has a genetic component, and we know that prostate cancer is more common in Black men, tends to be more aggressive,” said Zakalik.
Not everyone is a candidate for cancer genetic testing, but that group of people is expanding.
“Young onset diagnosis within the patient and family is a big red flag, multiple individuals with a certain type of cancer,” said Zakalik. “Actually, the indications have gotten so broad that now most patients with any type of history of young-onset or multiple individuals probably do meet criteria.”
It took weeks for my results to get in. My dad was right by side when I made the call and found out I was negative for all 47 genes they tested. It was a relief long overdue for me and the rest of my family. It took days for me to really wrap my mind around it because the unknown had weighed me down for so long.
While my results are negative, the center is recommending my mother and my younger brother to also get tested because there is a possibility, they could have the BRCA gene mutation.
To anyone with a family history of cancer who is carrying the same worry I did, my biggest advice is don’t let your fear limit your health. You’re not too young or too healthy to wonder. Get the genetic testing done so whatever the results are you can be proactive about your future.
You can click here if you’d like to learn more about genetic counseling.