The National Coalition for Cancer Survivorship (NCCS) was founded nearly 40 years ago with the mission of advocating for the millions of Americans “living with, through, and beyond a cancer diagnosis.”
Fast forward to 2024 and cancer therapies have advanced rapidly while deaths continue to decline. Thousands of patients are living longer after treatment and are faced with multiple survivorship challenges, including:
- Changes in appearance, such as mastectomy
- Diminished sex drive
- Fatigue that persists and interferes with daily life
- Infertility
- Lymphedema, which is painful swelling
- Mental health conditions, such as anxiety, depression, and post-traumatic stress disorder (PTSD)
- Financial toxicity, or cancer’s impact on employment and a patient’s finances
Yet survivorship care is still not where it needs to be. In 2021, a National Cancer Institute (NCI) workshop identified gaps in care that require longitudinal and follow-up clinical studies to better understand surveillance for recurrence and new cancers, management of long-term and late psychosocial effects, health promotion, care coordination, and financial hardship.
The U.S. has the most advanced medicine, science, and clinical trials, but people are still suffering from the treatments meant to save their lives. We have to move beyond the mindset of solely “eliminating cancer at any cost” to include survivorship care that will improve patients’ quality of life before, during, and after treatment. Here are three simple ways to start.
1. Redefine ‘healthy’ after cancer treatment
Generally, the term “healthy” is used interchangeably with being cancer-free. The patient finishes treatment, rings the bell, and tries to resume life as they knew it. Societal norms suggest, “Your cancer is gone. You should be grateful.” And many doctors agree.
But we know that’s not how life after cancer treatment goes, and that “health” encompasses more than physical metrics.
While a patient might feel relieved and happy that their cancer is gone, they may also be angry about how treatment disrupted their career, fertility, or finances. They may have lost their breasts to mastectomy, or a man may become impotent after prostate cancer. And they may be living with anxiety that the disease might come back or that they’ll never recover from lost wages during treatment.
The cancer death rate has declined 33% since 1991, which is a huge success. But if treatment leaves patients feeling lost or incomplete, we need to expand the focus of it to include what makes our patients feel healthy – a return to a sense of physical, emotional, social, and financial normalcy.
Cancer care providers can start by asking patients regularly about side effects that arise outside the normal window of what literature tells us is “normal.” For example, depression and fatigue can manifest after treatment ends as patients return to work, social activities, and regular responsibilities. By asking questions, we can connect patients with resources and relief while also gathering data to create more supportive, multidisciplinary care plans that introduce survivorship sooner.
Related reading: Writing Her Own Story: Breast Cancer Survivor Angela Sells
2. Get to know our patients on a personal level
“Even if we cure a patient’s cancer, we can cause real harm if we don’t understand what they need on a human level.”
Oncologists get very familiar with your cancer – where it lives, where it’s trying to go. But cancer is a tiny, cellular thing that doesn’t define you. The doctor-patient relationship is an important factor in cancer care – the American Cancer Society devotes a full step to it in its Choosing a Cancer Doctor guide.
Provider listening skills can directly impact patient outcomes. For instance, if a patient is “noncompliant,” we should ask why they aren’t (or can’t) follow their recommended treatment regimen.
A single parent with small children may have less flexibility in their schedule than a retired person in their 60s. So, it’s incumbent on oncology providers to find out who their patients are outside the clinic:
- Do they have children or want them someday?
- Are they caretakers who can’t risk being fatigued or weakened during the day?
- Do they risk losing their job if they take time off work during the day to go to the clinic?
- Do they have internet or telephone connectivity to use telehealth?
Patients often choose a provider for their level of expertise, and that should be one guiding factor. Of equal importance is the provider’s ability to adjust care based on the layers that make up the patient’s past, present, and future plans. For cancer, that often means extending our networks to include many types of providers in their care, as well as survivorship support groups and peer resources that will pay dividends long after medical treatment is complete.
Related reading: Cancer Survivorship Support Groups and Classes
3. Introduce survivorship care from Day One
Genetic testing can predict some cancers years before they develop, and advanced imaging can spot tiny tumors long before symptoms occur. Precision therapies can cure cancers that once were untreatable.
To talk with a doctor about cancer survivorship care, call 214-645-8300 or request an appointment online.
So, it only makes sense that survivorship care should be part of the care plan from the day of diagnosis. Creating a continuum of multidisciplinary care, with access to providers for mental health, physical health, and social needs, delivers the kind of whole-person care cancer patients deserve.
Telehealth is one aspect of care that can help achieve this. According to a 2023 study published in JAMA Network, telehealth saved 11,600 non-elderly patients between $147 to $186 per visit in just over one year, totaling $1.6 million in income that would have otherwise been lost in driving to and attending office visits. Additionally, many survivors struggle with maintaining employment post-treatment, leading to reduced income and increased financial strain.
The future of oncology care should prioritize optimizing the patient experience at every step. We already do this for chronic conditions like diabetes and heart disease – we need to get there for oncology. That means not just telling a patient, “We’re going to beat this; we’re going to eliminate the cancer.” It means saying, “We’ll eliminate the cancer and set you up for a healthy, satisfying future.” Then putting in the work to help make it happen.
Cardio-Oncology Program
UT Southwestern has one of the most advanced cardio-oncology programs in the country. It is designed to meet the complex heart and cardiovascular needs of cancer patients before, during, and after treatment.
