Navigating the Unanswered Questions of a Sister’s Hodgkin Lymphoma Journey

Although our upbringing was anything but typical, my four siblings and I grew up much the same. We had similar environments and diets, though some habits and behavioral patterns differed. When my sister was diagnosed with cancer, I could not imagine all I would learn as a family member, caregiver and medical professional about cancer and oncology. One of the first questions I asked her oncology team was, “What caused her cancer?” I also wondered, “Why her and not the rest of us?” Unfortunately, neither question has been answered. Unless science advances in understanding the origins of Hodgkin lymphoma, I am unlikely to find concise answers for either question. Yet, that lack of comprehension has not stymied my immense curiosity, guilt and wonder.

Hodgkin lymphoma is a blood cancer that arises from DNA mutations. The exact cause is not fully understood. My sister did not match many key risk factors such as the Epstein-Barr virus, a weakened immune system, being male and familial history. The only risk factor my sister met was age. She was diagnosed at 27, and Hodgkin lymphoma is most commonly diagnosed in people aged 20 to 39 or 65 and older. The familial risk factor may be the one that has stayed with me most. Research suggests that having a close family member diagnosed with Hodgkin lymphoma increases risk, and although there was no familial history prior to my sister being diagnosed, it has given me a lot of pause. Because of this, I chose to undergo genetic testing after her diagnosis. I wanted to better understand my own risk for cancer. I recognize the privilege in that opportunity because, unfortunately, genetic testing is not available to everyone.

Modern medicine brings a benefit: While the cause of my sister’s cancer remained unknown, her medical team did everything possible to treat and cure her. Although treatments were unsuccessful for her, they have worked for many others. This only deepened my questions. Why was her case so different? Why did all the treatments ultimately fail? Why did she endure so much when Hodgkin lymphoma is often curable? With every setback, I returned to these questions. I knew such thoughts were not constructive. Still, it was hard to avoid them while witnessing a loved one in pain and enduring cancer. Throughout, I never lost sight of the fact that my sister was the one enduring the disease. Her suffering was always at the forefront of my mind. Still, guilt and unanswered questions persisted. Why her, out of all of us? Why did she have the genetic mutation that led to cancer? Why was her case so genetically complex? Even knowing these questions lack answers, they have lingered in the months since her death.

Answers have always mattered to me. When my sister fell ill, I naturally sought answers: Why did this happen to my sister? and Could anything be done differently? As her disease progressed, these questions became an outlet for my emotions and ultimately fueled my decision to enter oncology. In grief, these unanswered questions reawakened feelings of helplessness and guilt. I struggle with acceptance, but I do hope to one day come to a place of acceptance that I may never have all the answers that I sought and continue to seek. That, as much as I want to, I cannot change what happened between my sister’s diagnosis and her death. Now I, in the aftermath of cancer reaching its heartbreaking conclusion of my sister’s death, have been working to approach them with a softer perspective than I have in the past.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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