When Communicating About Cancer Really Hits Home
June 22, 2023
Almost exactly a year ago, my sister was diagnosed with metastatic breast cancer. It was a few weeks before she was due to be married but, at once, everything seemed up in the air. The life she had pictured for herself as a newlywed was shattered: an extended honeymoon, plans for a new pet, and hopes of starting a family right away were all put on hold. Almost immediately, a new image of the next year or so took its place—one filled with uncertainty, anxiety, hospital visits, and a myriad of medications.
As a nurse in a critical care unit, she was already familiar with many of the treatments available to her including chemotherapy, radiation, and surgery. However, as a woman in her mid-thirties, she was also concerned about side effects, quality of life, and the long-term consequences of these therapies as she considered a treatment plan with her oncologist. It is from her perspective that I now consider how physicians communicate with their patients about treatment options and life as a cancer survivor.
Earlier this month, more than 40,000 oncology professionals from around the world arrived in Chicago—alongside Taylor Swift and devoted Swifties. In more than 200 sessions, these attendees of the 2023 American Society of Clinical Oncology (ASCO) Annual Meeting discussed state-of-the-art treatment modalities, new therapies, and ongoing challenges and opportunities in the field. As expected, several research updates in ovarian and lung cancer and multiple myeloma were presented. But, unlike past years, those undergoing treatment were also the focus.
The theme for this year’s conference, “Partnering with Patients: The Cornerstone of Cancer Care and Research,” highlights the relationship between the clinician and patient, with a specific focus on including the patient’s voice in guiding care. Transforming this concept into action, the conference included ASCO’s first patient forum titled “Communicating the Needs of People with Cancer,” in which those living with disease and their advocates shared perspectives on unmet needs and expectations of diverse patient communities.
In recent years, it has become evident that oncologists may place value on different metrics compared with patients. While overall survival has long been regarded as the gold-standard and primary clinical endpoint to physicians, people living with disease may value quality of life over longevity as the preferred measure. As such, to make the most informed decisions, it is important that those being treated and their caregivers understand what progression-free survival or disease-free survival really means for their care and their ability to engage in the activities that make their lives meaningful.
Researchers have found that the use of medical jargon can make it difficult for people with cancer—and those without—to understand what a clinical endpoint means in terms of how they feel and what they are able to do. Because of this confusion, patients may expect a therapy to help them live longer—accepting more associated risks—when the medication has not actually been proven to do so. It is essential for physicians to effectively communicate with their patients about what an endpoint means in plain language to align on goals for care and build trust.
As the number of therapeutic options increases, the patient’s care goals and tolerance for adverse events become an increasingly significant factor in making clinical decisions. Similarly, the order of therapies used to treat certain cancer types is equally important to collaboratively discuss throughout the decision-making processes. For instance, the wait for a customized CAR T-cell therapy—and the potential for disease to progress during the waiting period—may present challenges or concerns to the patient that dictate choosing another treatment option.
Recognizing physicians’ and patients’ differing priorities, researchers are now investigating cancer treatment de-escalation in clinical trials to reduce the amount and intensity of treatment patients receive while maintaining equally good cancer outcomes. New data featured at this year’s conference demonstrated that some locally advanced rectal cancer patients with tumors that respond to chemotherapy can safely forego radiation before surgery. These results were simultaneously published in The New England Journal of Medicine (NEJM) and the Journal of Clinical Oncology, and show a growing demand to reduce harsh side effects, spare healthy tissues, and potentially make treatment more convenient.
Optimization of treatment strategies is crucial since those being treated have already had their lives upended. Rather than focusing solely on whether one treatment offers a few more months of progression-free survival, clinical trials are exploring whether adverse events may be avoided; this is inspiring to see and essential for helping patients select a therapeutic path that fits best with their lives.
Multiple sessions at the meeting also discussed patient access and health equity, two recurring themes also seen in recent years. Highlighted research at ASCO 2023 shows that states in America that expanded Medicaid saw reduced cancer mortality and racial disparities in gastrointestinal (GI) cancer compared with those that did not. The results were particularly notable for Black patients, for whom consistent increases in receiving therapy (chemotherapy or surgery) and decreases in mortality were seen across three types of cancers (stomach, colorectal, and pancreatic). This study demonstrates the importance of access to medical care to improve survival for all people living with GI cancer. It also suggests that Medicaid expansion may be one approach to mitigating known racial disparities that exist in cancer treatment and survival.
For families like mine, the results of a late-stage trial reported at the conference earlier this month are very promising. Data show that ribociclib, a FDA-approved CDK4/6 inhibitor currently used to treat advanced breast cancer, significantly reduced the risk of cancer returning after treatment in people with early-stage hormone receptor-positive (HR+), human epidermal growth factor receptor 2 negative (HER2-) breast cancer, which accounts for almost 70% of breast cancers.
For many people, endocrine therapy works well, but for women with HR+ or HER- breast cancer, studies show there’s up to a 41% chance that cancer will come back. Thus, the 25% relative risk reduction brought about by the addition of ribociclib to hormonal therapy is substantial.
Of note, the dose of ribociclib used in the Phase 3 NATALEE trial was reduced from the usual 600 mg to 400 mg to improve safety. This decision was based on findings from other trials with metastatic breast cancer patients that showed efficacy was not lost when doses were reduced for improved tolerability. Overall, these findings could have a massive impact on how many women are treated, regardless of when the cancer is detected.
Luckily for my family, my sister is now in remission following a treatment course of chemotherapy, surgery, and radiation. Her hair is growing back and she’s doing well thanks to a treatment plan she and her oncologist developed and refined together. This discussion is ongoing as they continue to monitor and talk about potential options in the future should her cancer return.
With more treatment options and information available than ever before, it is critical that physicians talk with their patients to establish treatment goals and identify treatment priorities. As the cancer therapeutic space continues to expand, it’s promising to see physicians connect with patients, especially those who have historically not been treated well, if at all.
Hopefully, these trends will continue to develop, improve the care of all people living with cancer, and extend the amount of time we get to spend together. I cherish all the time I share with my sister now more than ever and always will, as time is the most valuable thing we can give each other.