ICARE Newsletter Fall 2024

Community Spotlight: The Patient and the Researcher Shares Her Uncertain Future and Lessons She’s Learned

By Marleah Dean Kruzel, PhD, BRCA2 Previvor

When I was eight years old, my mother found a lump in her breast – barely noticeable. For a few years, I watched her undergo chemotherapy, radiation, and a prophylactic mastectomy and reconstruction. Since then, my maternal aunt and grandmother also fought breast cancer, and we learned my great-grandmother died of breast cancer at 35 years old.

From a young age, I assumed I would get cancer. That is what happened to women in my family. But those childhood experiences also propelled my desire to give back to the medical community who saved my mom’s life. I earned my PhD and now conduct research to understand and improve communication of cancer and genetic risk information across patients, families, and clinicians.

During my doctoral work, I thought about getting tested. For a year, the test kit sat in my closet because I knew if I tested positive, it would change my life, so I wanted to be absolutely sure I was ready to receive the results. Finally, after my mom and aunt tested positive for a BRCA2 mutation, I did the testing.

After testing positive, I began surveillance, rotating between breast MRIs and mammograms every six months, a regimen I continue. But for over a decade, I have struggled with my uncertain future. One particularly difficult moment was my first MRI after having my son. It had been over a year and a half since I had been screened because I was pregnant and then breastfeeding. The radiologist found something “suspicious,” and I had a biopsy. While I was not diagnosed with cancer, it was in that moment I realized my uncertainty was not going to ever go away. No amount of information would reduce it. No amount of social support would make me feel less alone. So, I did the only other thing I could: I embraced it.

My journey with hereditary cancer has made me realize life IS uncertain. Yet, it isn’t just those with mutations who feel this, but other patients too—a cousin with diabetes, a father with heart disease, a grandmother living with Alzheimer’s. All humans—in all areas of life. But it is in the uncertainty of our lives we learn and grow. Embracing uncertainty means identifying it and moving forward anyways, knowing we will never have all the information to make a decision.

As I reflect on this past decade, in my roles as a patient and a researcher, I can share lessons I’ve learned which help me in my journey. Maybe they will help you, too:

  1. Information is powerful, but more information isn’t always better. Trustworthy and credible resources are important to find.
  2. Information changes. We live in an era of evolving cancer information. While this is exciting as a researcher, this also means that as a patient, I must continually reassess and talk to my clinicians.
  3. Actively participate in medical encounters. Ask questions even when we are embarrassed and bring information to our appointments even when we found them online.
  4. Emotions are part of the journey with hereditary cancer. Not only must we manage our own emotions, but our family members’ emotions may also influence us. We don’t always know what someone is going through, so we cut our family slack.
  5. Sharing genetic risk information is not a “one and done conversation.” Effective communication with family members requires multiple conversations over years. While we can’t control how our family members react, we can share information in stages to help reduce information overload and to help continue our relationships.

I hope these lessons are helpful and encouraging. May we embrace our uncertainty each day and remember what my mother always says, “We make the best decisions we can with the information we have…at that time.”    

Permanent link to this article: https://inheritedcancer.net/icare-newsletter-fall-2024-community-spotlight-the-patient-and-the-researcher-shares-her-uncertain-future-and-lessons-shes-learned/