“I don’t know why I thought I was above it. It was terrifying, but I am here now to tell you my story.”
When you think of the Super Bowl what comes to mind? Most likely a party, delicious appetizers, and of course the big football game. But, for Patricia Jakel, RN, MN, AOCN, Super Bowl 50 will forever be engrained in her mind — for all the wrong reasons.
Jakel woke up that morning and noticed her left breast didn’t look right. However, she decided to go to her party and hold off on calling her primary care doctor for a day because just five months prior, her mammogram and clinical breast exam showed that everything was okay. As an advanced practice oncology nurse for more than 30 years, Jakel knew just how important those exams were to her health.
“I never thought I would have cancer, and when you look around at our demographics, some of us in this room are going to have cancer,” she told an audience of her peers during a session at the 42nd Annual Oncology Nursing Society (ONS) Congress. “I don’t know why I thought I was above it. It was terrifying, but I am here now to tell you my story.” Jakel delivered this year’s Mara Mogensen Flaherty Memorial Lecture, an annual presentation at the ONS Congress spotlighting best practices in managing the psychosocial aspects of cancer.
An MRI that week revealed she had a large tumor in her breast. The wait for the pathology report began. “That was the hardest part,” she said. “I was robot-like. Ask anybody who worked with me. I went through the motions, but I wasn’t really there.”
Jakel was diagnosed with stage 3 invasive lobular breast cancer. She said that individuals don’t move through the cancer continuum in predictable stages. “We go back-and-forth. Every time I started a new treatment, like radiation, I started suffering again.”
In her talk at ONS, she explained that two major states are part of the praxis theory of suffering: enduring for preserving oneself (in which emotions are suppressed) and emotional suffering. To endure, people often turn to family, friends, religion, exercise, taking on “normal” activities such as housework or caring for children, or even seeking additional medical information about the disease. In Jakel’s case, she didn’t want to know the information. To this day, she still has never looked at her final MRI or pathology reports or the survival rates for her cancer type.
“Chemotherapy Is Not Going to Work for You”
Sara Hurvitz, M.D., director of the Hematology/Oncology Breast Cancer Program and an associate professor in the Department of Medicine at UCLA, is a co-worker and friend of Jakel’s.
Jakel shared a story of when she received a text message from Hurvitz asking her to come to her office. She thought to herself that it couldn’t be good news. With her hands shaking, Jakel asked Hurvitz to call her. The news wasn’t bad. Her cancer was HR-positive, HER2-negative, and her Ki67 levels were less than 10 percent, which means it was slow growing. However, Hurvitz told her, “Chemotherapy is not going to work for you.”
“So, now I was really panicked,” Jakel recalled. “My whole world is chemotherapy.”
Hurvitz asked Jakel to join the neoMONARCH phase 2 clinical trial. Without hesitation, Jakel joined. And after that meeting, Jakel says she and her husband felt “euphoric.”
Jakel did well on the trial, as did most patients, with abemaciclib reducing levels of Ki67 in the tumor cells of the majority of patients with HR-positive/HER2-negative breast cancer compared with anastrozole alone, as reported at the 2016 San Antonio Breast Cancer Symposium.
Because Jakel’s tumor was so large, she was not eligible for a lumpectomy. She underwent a mastectomy, followed by 36 sessions of radiation, and has one more surgery to go.
Talking the Talk: Making Communication Less Stressful
One of the greatest challenges for any patient with cancer is finding a way to tell people that you have the disease.
“No one told me how hard it would be to tell others. This is exhausting,” said Jakel.
Some advice she offered is to make a plan on whom you want to tell and how, set limits on communication, be prepared to accept or ask for help, and understand that family and friends may not respond the way you want them to. For instance, Jakel says people constantly asked her, “Why did this happen to you?” A question, she said, most patients with cancer constantly ask themselves, but for which no one knows the answer.
She joked, “I haven’t eaten a piece of red meat in 35 years. After I found out [about the cancer], I texted my friend and said I want two steaks and a loaded baked potato, right now!” She later decided not to go through with the impulsive thought.
Unsupportive family, friends and even healthcare workers — Jakel said she got it from all sides — can lead a patient to feeling stressed and depressed. This can also lead to poor psychological well-being, avoidance of the topic or feeling isolated from one’s social network. Jakel shared many of the unsupportive interactions that she encountered: “Your MRI looked so bad, we wanted to rush the biopsy”; “I really thought you were someone who would not do well”; “You are my hero”; “Why didn’t your husband find it”; “Why didn’t you tell me?”
“I must have been told 100 times, ‘Because your tumor is so large.’ It was a knife in my heart every time I heard that,” she recalled. “These people don’t mean [to say] mean things. It just comes out sometimes.”
A Lesson From a Fellow Patient
Throughout her presentation, Jakel kept coming back to small video clips of one of her patients, Nicole, who at age 30 and a mother of two, was diagnosed with non-Hodgkin lymphoma. She told the audience how Nicole used the word “terror” to describe her cancer experience, a term that Jakel had never even considered, but found Nicole to be accurate in her description.
Nicole said, "It’s beyond fear. I’m terrified. I’m terrified at every moment."
Jakel added, “And I thought, you know what? She is right. I apologize to every patient that I ever gave their last dose of chemotherapy to, and I said, ‘Go live your life. Go do good things.’ It’s not that easy. Getting back in the saddle is not that easy.”