Denver, CO—When an oncology nurse becomes a patient with cancer, she has to rethink her identity, and will experience a torrent of emotional changes, according to Patricia Jakel, RN, MN, AOCN, Clinical Nurse Specialist, Solid Oncology Program, University of California at Los Angeles Medical Center, Santa Monica. Ms Jakel delivered the 36th annual Mara Mogensen Flaherty Memorial Lecture at the 42nd annual meeting of the Oncology Nursing Society. During her talk, Ms Jakel provided a road map of what not to say to someone who has received a cancer diagnosis.
“I will discuss the terror of cancer—the view from the other side of the hospital gown. I’ve been an oncology nurse for 36 years, and never thought I would get cancer. I hope you can learn some lessons from my experience. It is very hard to put that hospital gown on for 36 sessions of radiation,” she said.
Ms Jakel first noted a breast abnormality when showering. She had had a clean mammogram and breast examination 5 months earlier, so she did not think much of the “dent” in her breast.
When she called her primary care provider, a mammogram was denied because of insurance carrier changes, and she was told she would have to wait 6 weeks for a surgery consultation. Ms Jakel was able to use some pull, and had a magnetic resonance imaging (MRI) scan.
“The MRI was very uncomfortable. I still didn’t think I had breast cancer. I was naïve, thinking this would be fine,” she told listeners.
When she went for a screening colonoscopy at her healthcare system, Ms Jakel’s gastroenterologist told her the breast MRI results were in, and that the results suggested breast cancer.
“The freight train started in my head. I cancelled the colonoscopy and I couldn’t hear or see. My primary care physician called and scheduled an ultrasound 3 hours later. I was put in the front of the line for ultrasound and biopsy. I was told that my tumor was 5 cm by 6 cm by 3 cm, and it wasn’t on the mammogram 5 months ago—but lobular cancer doesn’t show up on a mammography,” she said.
Studies show that patients with breast cancer have more anxiety about biopsies than some other groups of patients, Ms Jakel continued.
“The wait for results was the hardest part. I put up a wall and became robot-like. At this point, I went deep inside. At this point, don’t hug us. We need to keep the wall up and build ourselves up for sorrow,” she explained.
She found some solace when reading Paul Kalanithi’s book about becoming a patient with cancer, When Breath Becomes Air.
“He opened my eyes, and I stopped saying ‘why me,’ and instead thought ‘why not me?’ How could I say it should be someone else who gets cancer?” she continued.
Ms Jakel was diagnosed with stage III, hormone receptor–positive, HER2-negative, invasive lobular breast cancer. She wanted to keep the diagnosis to herself, with some exceptions.
“To this day, I don’t want to know the survival statistics. I chose never to look at my MRI report or my pathology,” Ms Jakel said.
Her treating oncologist, Sara Hurwitz, MD, encouraged her to participate in the neoadjuvant MONARCH trial evaluating abemaciclib, a CDK4/6 inhibitor, plus an aromatase inhibitor.
“Dr Hurwitz said chemotherapy would not be a good choice for my tumor,” Ms Jakel noted.
She had a good response to neoadjuvant therapy, and was able to undergo surgery. One of the hardest things she experienced was having to tell other people about her diagnosis.
“Telling other people is exhausting. Be prepared to accept help. Set limits on communication. Understand that people may say things that are not helpful, such as, ‘Why did this happen to you?’ or ‘Be strong and stay positive, you’ll be fine,’” Ms Jakel continued.
What Not to Say
Unsupportive social interactions are harmful and lead to increased stress, alienation from one’s social network, and depression. Unsupportive behaviors include bumbling, offering advice, smothering, oversharing, and reacting with intense emotions. Minimizing, blaming, and premature grieving are also harmful responses.
Ms Jakel shared some of her own unsupportive interactions, including “Your tumor is so big,” “So-and-so is so worried about you,” “You are so strong,” and “I really thought you wouldn’t do well”—the latter of which came from her radiologist.
“People don’t mean it but they say things that are tough to handle, such as, ‘You are so lucky that you don’t need chemotherapy,’ and ‘Why didn’t your husband find the tumor?’” she said.
Ms Jakel underwent a mastectomy, and then the next step was radiation for 36 sessions.
“It is a lonely procedure day after day. You are all alone in the radiation room. Music helped,” she said.
In addition to the emotional roller coaster, she grappled with side effects of chemotherapy and radiation that included sexual issues, hot flashes, fatigue, skin burn, nausea, and cognitive impairment.
“Exercise helped, even though I had to come home and take a nap,” Ms Jakel said. Her current treatment plan includes 9 more years of aromatase inhibitor therapy, and 1 more surgery.
“The elephant in the room is fear of recurrence. We need a tool to measure fear of recurrence. This is a gap in nursing research. The fear goes away, but the terror will always be there,” Ms Jakel emphasized.
“Getting back in the saddle is not easy. I have joint pain [from the aromatase inhibitor], and I have to be concerned with bone health. PTSD [posttraumatic stress disorder] is real, and so is the anxiety,” she concluded.
She told the audience that nurses are the first line of defense, and are the ones who can help their patients deal with the stresses of cancer diagnoses and treatments.