Learning to Do Cancer: Words Matter
Due to my interactions on social media, I have become sensitive to the language of oncology. I’ve realized that so much of the vocabulary we use in our field can be interpreted in quite different ways and along with many others, I’ve tried to highlight some phrases that might have an unintended effect. We never mean to imply personal failure when we say “she failed treatment,” but the intention means nothing if you are on the receiving end of that phrase: “It’s your fault it didn’t work” might be what a patient hears. I could go on about this, but as I said, I’ve written a lot about language. I always find it more illuminating when I talk to others about their own experience in cancer land, especially when it’s someone who isn’t a healthcare provider. I’ve got to say, I am now surrounded with many men and women who engage with me on a daily basis thanks to social media, and their input and opinions matter to me as much as the key opinion leaders who discuss the latest trial results and updates in our field. I’ve taken my cues from them when issues arise of importance to their particular communities and often, it’s helped me evolve as a clinician, and as a communicator.
One of these people is Stacey Tinianov. I first met Stacey through Twitter where she goes by the username @coffeemommy. Since her diagnosis and treatment for early stage breast cancer in 2013, Stacey has become a vocal advocate for patient engagement and empowerment via collaborative education; community building; health data access; and person-centered health care design. She loves helping people find their “outside voice” and openly shares the clinical and emotional details of her own treatment and survivorship in the hopes that, as knowledge breeds understanding and empathy, we can collectively transform the system to meet the clinical and holistic needs of both patients and clinicians.
Goals of Care
I mentioned to Stacey how clinicians are being told to explore goals of care, especially for people living with advanced or metastatic cancers. It struck me as odd when I first heard it—the goal is to cure or treat effectively. What else is there? But now I realize that goals are as different as people are, so it makes sense. Still, I’ve always wondered what people with cancer might think about the term and what it means?
“Goals of care” can definitely be a confusing term. For many individuals, newly diagnosed with an early stage and treatable cancer, the only 'goal' they see is becoming cancer free. This is where the physician and patient are usually in absolute alignment. However, during treatment, and certainly for those dealing with a metastatic disease, often the goals of care require getting a little more specific and personalized to focus on quality of life as well as eliminating cancer.
I think for all of us, though, our personal preferences and life situations should be significant considerations for “goals of care.” For instance, the goals of an 80-year-old woman diagnosed with an aggressive cancer may simply be to have the energy to dance at her granddaughter's wedding. As such, she may opt not to proceed with an aggressive protocol that might take away that desire. However, a 30-year-old man, who has just welcomed his first child into the world, may be solely focused on getting to experience as much of fatherhood as possible and opt for an experimental protocol in the hopes of seeing his child's first steps. Both of these decisions are important, and for each person, the right one for them.
A Person with Cancer
Her remarks made me recall something I heard once at a conference attended by a diverse group of stakeholders in oncology: advocates, clinicians, administrators, and policy experts. At that meeting someone shared her experience about undergoing treatment for ovarian cancer and started off by saying, “I had to learn to be a person with cancer.” That definitely stayed with me—it’s not as if someone newly diagnosed with cancer prepared his or her life for that moment. Indeed, more often than not, cancer isn’t something people envisioned in their own future. I wanted to know if that fit with Stacey’s experience.
Yes and no. Since I was diagnosed with an early stage breast cancer and treated with curative intent, I only felt connected to “person with cancer” for a short time. During that time, I was fortunate to be well-supported by family and friends but, as a fiercely independent person, it was an adjustment to have (and to really acknowledge I needed) that much help. Once I was declared NED, or having No Evidence of Disease, I considered myself a “survivor.” After learning that some people may recur with an additional early stage tumor and some individuals metastasize, I now consider myself a thriver. Looking back on that time, I realize I never once considered myself a "cancer patient" in the sense that those words defined me. I was still me—a wife, a mother, and an athlete. I was just dealing with a challenge I'd never expected to face and hope to never have to actively face again.
Cancer as a Chronic Condition
We then chatted about how cancer treatment has evolved through the years. In fact, it was an entirely different field when I first started, almost twenty years ago. Now that we have more therapies for those living with advanced or metastatic disease, I often will refer to cancer as a chronic condition. This has turned out to be quite controversial, and many of the people I interact with really don’t like it portrayed this way. I asked Stacey about her thoughts on this too.
While the definition of “chronic” in the sense of perpetual and continuous treatment certainly fits, I think much of the issue with the terminology comes from comparisons, intended or unintended, with other chronic diseases as well as the confusion between a chronic condition and a chronic disease. Alzheimer's is considered a chronic disease. And, just like metastatic cancer, Alzheimer's can (and likely will) kill you. So, by definition, the comparison makes sense. That said, diabetes is also a chronic disease and, while diabetes is responsible for over a million deaths annually, worldwide, there are also people for whom diabetes is manageable for decades. While many can definitely see the similarities between other chronic diseases, like Parkinson's and heart disease, for those that are actively dying, with no known next treatment, the comparison can be tough. High blood pressure is a chronic condition and we can all acknowledge that there is a huge abyss between the realities and options of individuals with high blood pressure and individuals with metastatic cancer. Words absolutely matter and, while something may fit denotatively, we need to ensure that we respect individuals’ connotation of the words as well.
One of the things I know Stacey is passionate about is engagement—having people being a part of their treatment rather than just the receiver of care. I wondered what advice she had for both providers and patients to move towards patient-centric care?
[For clinicians,] get to know the person, not just the disease. I fired my first oncologist because, based on her recommendations for my treatment and her inability to listen to my concerns, I did not feel that she saw or heard me as a whole person. She saw me as a cancer host and her goal was to kill the cancer. We had a common goal but hers felt shortsighted and didn't take into consideration my other priorities—long-term quality of life and personalized treatment based on existing diagnostic testing. Check for understanding in a compassionate way. Just because you've explained something doesn't mean the individual has had the time or the emotional and mental strength to absorb the information. "Do you understand?" is a worthless question because we don't know what we don't know. Ask the person in front of you about what they think they heard. Listen for disconnects. Lean into them. Sometimes we all hear what we want to hear, so it's important to identify those confusions early.
Ask the person in front of you, "What's important to you?" and "What brings you joy?" and "What are you most afraid of?" These are telling answers and they're not always static.
And for people seeking care, first of all, if you WANT to be a passenger, be a passenger but definitely identify a driver that you trust. That 'driver' may be your medical oncologist or it may be a family caregiver or it may be a patient navigator. A cancer diagnosis is often fraught with feelings of helplessness and lack of control, and that is unsettling for most of us. Beyond identifying whether you want to be a passenger or one of the drivers in your own care, you need to build a care team that you trust. Insurance and in-network providers certainly constrain our options sometimes, but do not be afraid, or try not to be afraid, to ensure you get the right fit. In other, more explicit terms, do not be afraid to fire your medical oncologist, your surgeon, your nurse navigator—anyone. Any health crisis is tough. Cancer absolutely sucks, so find and build a team that you trust to keep your best interests, clinical and otherwise, at heart. And understand where you find your power. For me, knowledge is power, and I wanted to know all the things before I made a decision. For others, power is in their faith or spirituality. Find your power and your voice. Be vocal about what you want, what you don't want, what you're afraid of, and what is working for you.