Author: Mia James
If you are or have been a cancer patient yourself, you are all too familiar with the feeling, as breast cancer survivor Colleen Logan Hofmeister puts it, of being “blindsided” by the experience. For many patients and their loved ones, this feeling of being overwhelmed by the news of a diagnosis and consequent treatment plan is exacerbated by strange terminology—unfamiliar language that can make you feel even less in control.
Understanding cancer terminology, however, is actually an aspect of treatment that you can control: By building a cancer vocabulary, you will better understand the details of the diagnosis and your treatment plan and become an empowered member of your care team.
According to Andrea Goodwin, RN, Care Manager at Cancer Treatment Centers of America® (CTCA) in Newnan, Georgia, “‘Cancer vocabulary’ refers to the terms that the nurses, doctors and providers use to discuss the treatment plan and diagnosis.” Some of these words may be entirely new to you, such as complicated drug names or obscure types of cancer. Other words may sound familiar but have a new meaning in the context of cancer. “Stage,” for example, is a word you know, but you may not have previously used it to describe how much cancer is in the body (tumor size and whether it has spread from the original site to other parts of the body).
“Cancer stage” was a particularly important term for Colleen of Long Island, New York, who was diagnosed with stage IV (metastatic) breast cancer. “All I knew about stage IV cancer was that there was no stage V,” she says. As a mother of two who wanted to see her children graduate from high school and college, this knowledge alone was “sobering,” she says, especially without a broader vocabulary to help her also understand encouraging information, such as potential benefits of treatment. But Colleen had more to learn, much of which would help her feel hopeful and more in control. “I didn’t even know what the word ‘metastatic’ meant when first diagnosed,” she says. But she soon started her education: “I slowly learned the medical terms and what it meant to be diagnosed with late-stage disease.”
To help newly diagnosed patients get a head start on vocabulary, Goodwin reviews key words with patients on day one: “I always try to go over new terminology and make sure patients understand it all.” She believes that this is an important step in beginning treatment because a good grasp of terminology helps put patients on the right track with regard to following the treatment plan and taking control of fear and uncertainty. “The biggest thing that I think building a cancer vocabulary does is decrease confusion and ease anxiety,” Goodwin explains. “The more patients understand the importance of the plan, the more likely they are to stick to it and follow through.”
Another benefit of building a cancer vocabulary, according to Goodwin, is the fact that it helps patients become more directly involved in their own care. “I feel like it does make them feel more a part of their whole plan,” she explains. “Patients feel like they’re being talked to—they can actually have a meaningful conversation with providers and not feel embarrassed because they don’t understand what’s being discussed.”
This well-informed exchange, in which patients understand terminology, also helps providers perform their jobs more effectively. “The more patients understand and can communicate,” Goodwin says, “the better they can communicate issues back to their care team.”
For Colleen building a cancer vocabulary has been highly valuable, and she encourages other patients to become similarly informed. “The more you know about [the diagnosis], the more empowered you will feel in your ability to live with it,” she explains. She also says that her familiarity with cancer terms has helped her start important discussions with her care team: “I absolutely believe that learning all the terminology has helped a great deal. Anytime I read something about stage IV breast cancer, I am able to understand it, print it out and discuss it with my oncologist.”
Tap your resources
Goodwin advises starting with your care team—nurses, doctors and other professionals— to help build a cancer vocabulary. As a patient, she explains, you are not expected to know terminology when first diagnosed, so she encourages you to ask the experts around you. “This is what we went to school for,” Goodwin says of her and her colleagues’ medical vocabulary. “Feel free—ask away. That’s what we’re here for.” There is no shame in not knowing these terms, Goodwin says, adding that your providers want to know what you do not understand so that they can better explain things.
If you want to learn more vocabulary on your own, Goodwin recommends reviewing
your resources with your care team. She says that though there is a wealth of information out there—on the Internet in particular—not all of it is accurate; a medical professional can help you find reliable information.
As with many aspects of treatment, Colleen recommends turning to your friends for help in building a cancer vocabulary. “I would advise newly diagnosed patients to find someone in their circle of support to be the research person.” Even if you think you can handle the task yourself, Colleen says that you’ll likely have enough on your mind already: “When reeling from the diagnosis and sorting out treatment possibilities, the last thing you need to worry about is cramming as much cancer-related information as possible into your already inundated mind.”
It may be hard to believe that something as complicated as cancer can be made less formidable by something as simple as vocabulary, but expert and patient experience proves that this is indeed the case: By learning key terminology, especially the words used by your providers, you’ll be better prepared to take control of your experience and outcome.