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Kelly’s story: Staying ahead of cancer by knowing her risk

Patient Stories

When it comes to having a cancer risk assessment, family history of cancer is important in calculating overall cancer risk. Imagine how challenging this would be if you were adopted and your birth parents preferred to keep their information private?  This was Kelly’s dilemma and a situation many adopted people face when trying to understand their hereditary cancer risk.

Kelly’s story begins in 1991 after a benign breast tumor in her left breast was removed. Years later, her gynecologist suggested she undergo genetic testing to better understand her cancer risk. The test process included a blood test and completing a questionnaire that asked for details about family history, much of which Kelly was not able to provide since she did not have much knowledge of her birth family’s health background. A risk assessment plus genetic testing provides a more holistic view of the risk for cancer.

Kelly received her genetic test results which revealed a variation in the BRCA2 gene. The result was not definitively positive or negative; rather, it was categorized as a variant of unknown significance (VUS). This led her to believe she had a genetic mutation, but she did not pursue a detailed explanation or genetic counseling.

Throughout the years, Kelly tried to learn more about her birth family and their health history. “I used Ancestry and 23 and Me to find more family members. This was moderately successful, but I really needed more information directly from my blood relatives,” said Kelly.

Around 2018, a small mass was seen in her right breast and the breast specialist suggested monitoring every few months for growth and changes. After a year of no changes, she graduated to yearly mammograms and ultrasounds as an extra check on her breast health.

“In 2020 I found my birth mother’s family and learned that my birth mother had died 2012 from cancer, but the type was unknown due to the family’s extreme desire for privacy. My birth mother’s siblings shared a few types of cancers they had survived, and it revealed that breast cancer was running in my family.”  Kelly has not been successful finding health information from her birth father’s side of the family which limited her health history to just one side of her genetic families.

Kelly stayed faithful to her breast screening recommendations, but in 2022, the radiologist recommended adding annual MRI to her screening mammography. Most insurance companies won’t pay for screening MRI unless the provider’s documentation supports the need for it.

At her next annual gynecology appointment Kelly asked about the screening MRI recommendation. Her doctor, Dr. Paccione, mentioned a recent presentation by High Risk Program Clinical Coordinator, Kiana Ohlson, about Northside Hospital Cancer Institute’s new High Risk Clinic. She felt Kelly met the criteria and suggested Kelly meet with Kiana to better understand her cancer risk, and to discuss the order for breast MRI which are excellent exams for patients at higher risk.

“My experience at the High Risk Clinic could not have been better. Kiana updated my risk assessment with my newfound family history details. She was extremely kind and patient. Her approach is very calming, and she explained everything in very simple, easy to understand terms. She also provided me with brief genetic counseling, and I now understand that a VUS is a gene variation, but not necessarily diseases causing.  The lab will monitor me and others with VUS and will notify me if they learn it is linked to certain diseases. I also now understand that family history is very important even with negative genetic testing.”

“A major part of the initial visit is just talking about risk – what does it mean, what are risk factors in our control and not in our control, why do we ask for so much information?” Kiana said. “I want my patients to be educated. All the cancers Kelly reported increased her risk level. Adding her family history to her previous biopsy, breast density, her family’s cancer history and other factors increased her risk score to over 20%. This is why it is so important to know your family history because it could impact your overall personal risk and this will impact your options for screening. We need to identify people early who are at high risk so we can help them possibly avoid cancer or find it at its earliest stage.  It is recommended that every woman to have a risk assessment by age 25,” said Kiana.

Now that Kelly has a better understanding of her cancer risk, she is making life changes to help reduce her risk. She met with the High Risk Program’s Registered Dietitian to make dietary changes and in addition she exercises regularly.  She also added MRI screenings 6 months apart from her mammograms.  “These are things I can control. I hope to live just as long as anyone.  I know my risk, I have a plan, and I know I’m in good hands with the High Risk Clinic,” said Kelly.

Kelly has also taken an advocacy role with friends and family. “I tell them, don’t procrastinate and don’t be scared about genetic testing and risk assessment.  It takes just a few minutes, and it could really make an impact on your life. If you are not well, you can’t help your family. Even if you find out you have a bad gene, you’ll know how you can stay on top of it and work towards stopping cancer or finding it early when it’s most curable. So don’t let fear cut your life short.”

“And if you don’t know your family history, or if you’re adopted, all the more reason to go get tested. The knowledge I have of my risk and extra screening I receive gives me peace of mind. I wish that for everyone.  So, try to get the lines of communication open with your family – and even if you don’t think you’re at risk – still get tested.”