Cancer Patient Calls for Less ‘Battle Language’ and More Focus on Palliative Care
The week of her 30th birthday, Tori Geib woke up to a feeling of unusual pressure in her left breast.
“I thought I’d rolled over onto my cell phone, but I quickly realized there was no phone there. The pressure I felt was coming from a hard lump in my breast,” she recalls.
Concerned, Tori consulted a nurse practitioner that day. A mammogram was scheduled for the following week. Additional imaging tests, a biopsy and second opinion confirmed metastatic (stage IV) breast cancer (MBC). Unfortunately, this meant the cancer had spread to other parts of her body, including her spine.
“I had been experiencing back pain, but I was working two jobs; one as a chef and the other as a food and beverage manager at a local ski resort. I was regularly lifting heavy bags and cases. I had seen doctors about my back pain and had been told that my pain was probably just from ‘over doing it’ or could be some fibromyalgia or depression pain,” says Tori. “Overnight, my life was completely changed. There is no known ‘cure’ for MBC. It is terminal, and I will be in treatment for the rest of my life.”
According to the Metastatic Breast Cancer Network, more than 155,000 people are living with metastatic breast cancer. Although stage IV metastatic breast cancer is treatable, it is considered a terminal disease.
“For people living with metastatic breast cancer, our diagnoses don’t always fit the traditional breast cancer narrative. We are not counting down to the end of our treatments, waiting for the day when we will be cancer-free and can go on with our lives. We won’t be ringing a bell when we complete treatment. We’re not the subjects of triumphant ‘beat cancer’ profiles,” says Tori.
This, she says, is why the “battle language” so commonly used in the context of cancer – beat, win, conquer – is like “nails on a chalk board” to her.
“It makes it sound like someone didn’t do enough to help themselves,” Tori says. “There are no losers when it comes to cancer, even though many of us will eventually die of this disease. We want conversation that focuses on living as well as we can.”
For Tori and many others living with a chronic cancer diagnosis, palliative care – a medical discipline focused on treating the painful symptoms and side effects of cancer – plays an important role in improving quality of life.
The treatment can take many forms. For Tori, it involved a comprehensive approach to address the physical and mental strains of cancer.
“My life became a roller coaster of doctors’ appointments, testing, treatments and their side effects,” she says. “I was fortunate to be treated by an oncology practice that makes palliative care a priority for all patients. It isn’t that way at all hospitals. Palliative care was part of my treatment plan from day one.”
Tori receive her care at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James), where palliative care experts are embedded within subspecialized oncology teams to provide patients with a wide variety of pain relief options, including massage, reflexology, acupuncture, medications to manage nausea and other interventions.
There’s a common misconception that palliative care is synonymous with end-of-life comfort care, which is most commonly provided through hospice. While hospice and palliative care share certain goals, like making patients comfortable, hospice is focused on doing that at the end of life while palliative care focuses on helping metastatic patients live the fullest life possible now, in spite of cancer and its side effects.
“Palliative care has not only allowed me to manage my pain, but it has continuously given me ways to manage different physical, social and emotional difficulties,” Tori says. “I have been empowered to make informed decisions about my options and to manage my pain and other life-altering effects of cancer.”