In the fall of 2013, Loriana Hernandez-Aldama was working as a high-profile health reporter and TV news anchor. She was fit, healthy, and busy with her career and 2-year-old son when acute bone pain woke her up in the middle of the night. At the time, she had no idea that her journalistic skills and knack for sharing stories would help her through the hardest ordeal of her life.
Oncologists told her she was just tired—she was working too hard; she needed rest—but her fertility doctor insisted on ordering a bone marrow biopsy. By January 2014 she had been diagnosed with acute myeloid leukemia (AML). Within 24 hours, she was in a bed at the Sidney Kimmel Cancer Center at Johns Hopkins, being told she was about to start induction chemotherapy.
While the odds of finding a bone marrow match are nearly 80% for a White patient, the odds are 48% for a Hispanic/Latino patient, and only 29% for Black patients. Being Cuban, her odds of finding a match were low. She was shocked that this lack of diversity in cancer care was possible in 2014 and wondered how she missed this story in her work as a reporter.
“In all my years of TV, how had I not told this story? I felt like I had failed my viewers,” she recalled. “From that day forward, I reported from my bedside and committed to being transparent. I had missed the story, but I was going to make up for it.”
At the AONN+ 13th Annual Navigation & Survivorship Conference in New Orleans, Ms Hernandez-Aldama, Emmy award-winning journalist, author, 2-time cancer survivor, patient advocate, and founder of ArmorUp for Life, shared her story and discussed her firm belief that a current lack of PREhab, risk reduction, and psycho-oncology in cancer care is costing lives.
Patients Need Psycho-Oncology
According to Ms Hernandez-Aldama, cancer-related post-traumatic stress disorder (PTSD) should be considered a comorbidity of cancer, but it is underacknowledged in the United States. She calls it “cancer’s invisible side effect.”
“I always say I’m a veteran of a different war; I didn’t fight for this country, but I fought for my life twice,” she said. “And trauma, depression, and PTSD haunt me every day.”
After a bone marrow transplant (received from her sister), she was not receiving the support she needed, including any semblance of a survivorship program. Eventually, she became suicidal.
She says that “QOL”—a commonly used term in oncology—rubbed her the wrong way, as it attempts to reduce the entirety of a patient’s suffering down to 3 letters. “My heart sank when I read the definition of quality of life at a conference,” she recalled. “All of the things I can’t do: all of the trauma, neuropathy, bone pain, GVHD [graft versus host disease], PTSD—the immunocompromised everything—is reduced to just 3 letters. We need to know that QOL is more than just 3 letters. It’s my life; it’s every patient’s life.”
Without a navigator to guide her, she took it upon herself to navigate her situation alone, to speak up for patients who did not have a voice, and to become her own hero during the year she spent in the hospital. She was committed to becoming an advocate for other patients experiencing the same struggles, and to making sure her son would have a mother.
In the process, she discovered silos and voids at every turn, including a lack of support for the overall patient experience, outdated clinical trial recruitment techniques, no diversity in clinical trials and bone marrow donors, no psycho-oncology support, no cardio-oncology direction, widespread implicit bias, and unequal healthcare access for all patients. However, she says her nurses became like family and took on the burden of filling in all of these gaps whenever they could.
“There was a desperate need for a whole-patient approach,” she said. “But I knew if I shared what I had discovered, I could reimagine patient care, drive health equity, bridge the gap in health disparities, and improve patient outcomes.”
First, she learned that psycho-oncology support for patients is a “must-have.” The suicide rate is 85% higher for people with cancer than the general population, and the single biggest risk factor for developing a mental health condition is treatment involving surgery, radiation, and chemotherapy. Further, suicide rates among people with cancer are notably higher in the United States than in Europe, Asia, or Australia, possibly due to the high cost of American healthcare, leading some patients to forego treatment to avoid bankrupting their families.
While some might argue that psycho-oncology does not help “the bottom line,” she maintains that it does. “If I’m in the game mentally, and I want to fight and get home to my son, I’m going to do things to meet the medicine halfway and be an equal partner in my own success,” she said.
“Sometimes When You Win, You Lose”
After coming home from the hospital and still struggling with the effects of cancer-related PTSD, Ms Hernandez-Aldama was repeatedly told to “be glad she was alive.”
“I can’t stand that saying. I’m grateful I’m alive, but it doesn’t mean I deserve a lesser quality of life,” she said. “I lost my mind and my identity. My career unraveled. We were broke, I was broken with long-term health complications, and my marriage was falling apart. I lost nearly everything.”
She acknowledges that her connections gave her access to the best doctors at the best treatment facility with the highest level of medical care. By filling the void where the healthcare system could not, her connections ultimately saved her life, she says. However, she firmly believes that who you know should not determine your outcome, so she became dedicated to asking as many questions as she could, and sharing what she learned with patients and the general public.
The Power of PREhab
When she started to lose the friends she had made in the hospital to cancer, she feared she was going to be next. “I was too scared to sit still,” she recalled.
She read about and researched the health benefits of walking, and was told by her oncologist that “movement is medicine.” So, the more depressed she became, the more she walked.
Although she was only given a 25% chance of survival from AML, she learned that her level of fitness and clean eating habits going into treatment gave her a major leg up. Her doctors told her that her genetic code might be working against her, but her fitness level and lack of comorbidities were working for her, allowing her to push her limits and max out her medication doses.
Learning this allowed her to develop the “3P Protocol: Prepare, Present, Prevail,” as described in her book, Becoming the Story: The Power of PREhab. The protocol urges people to prepare their body for illness so they can present well to their medical team and be better positioned to prevail. Her oncologist emphasized that no matter how much a person tries to prevent an illness, they still have to prepare for it; although more medical advancements are needed (particularly in the blood cancer space), how a patient presents is often the biggest challenge to treatment, and if a patient is not meeting them halfway, the oncologist’s hands might be tied.
Further, suicide rates among people with cancer are notably higher in the United States than in Europe, Asia, or Australia, possibly due to the high cost of American healthcare, leading some patients to forego treatment.
Prepared patients equate to better patient-reported outcomes. She emphasized the importance of preparing people for the worst by addressing comorbidities and risk factors (particularly among the underserved and racial/ethnic minorities), long before they become sick with cancer or another chronic illness. As her oncologist told her, “We can’t kill you trying to save you. If you’re not healthy enough, we have to tiptoe around your comorbidities, and that makes an impact [on your health outcomes].”
Ms Hernandez-Aldama noted that many patients have no idea that movement and PREhab might make a difference to their health outcomes, and added that getting fit can even help patients to quality for more clinical trial opportunities.
On her fifth anniversary of surviving AML, she was diagnosed with breast cancer during the COVID pandemic. But because of her knowledge of PREhab, she felt prepared for the fight ahead. She underwent a double mastectomy and is once again cancer-free.
According to Ms Hernandez-Aldama, everyone should—at the very least—be warned about the dangers of being ill prepared, educated on the power of PREhab, and given a chance to do their part as active participants in their own health outcomes.
“I lived, and now I have a platform and a moral obligation to make the path better for others,” she said. “Rather than asking patients to beat the odds, we have to start changing the odds.”