Surviving cancer starts at diagnosis and continues after treatment – earlier survivorship care can help patients feel better and live longer

Marci Lee Nilsen, University of Pittsburgh

“You have cancer.” It’s a phrase that comes as a shock, then is quickly followed by a whirlwind of decisions that somehow feel fast and slow at the same time.

You have treatments to decide on. You are trying to figure out how you might work, care for your family and undergo a variety of intensive medical appointments all at the same time. You are centered on the here and now, and thinking about five or 10 years down the road is not at the forefront of your mind. Getting through treatment is the finish line you are reaching for; that is when you may actually feel like a cancer survivor.

As a nurse and scientist who has spent over a decade caring for cancer patients and studying ways to ease the effects of treatment, I have heard this story time and time again from both survivors and their loved ones. But survivorship actually begins at the time of diagnosis.

In fact, in our newly published research in JAMA Otolaryngology–Head & Neck Surgery, my team and I found that patients with head and neck cancer who started survivorship care – healthcare services that support a cancer survivor’s physical, emotional, social and practical needs – earlier were more likely to stick to treatment and be alive without cancer three years after treatment.

What is cancer survivorship?

Clinicians and researchers consider a person a cancer survivor from the time they are diagnosed through the end of their life. More important than the term is what cancer survivorship is meant to look like for the patient.

Cancer survivorship reflects the patient’s experience with cancer and cancer treatment, and the physical, emotional and social effects that has on their life. Survivorship care is designed to identify and address the complex needs of a cancer survivor beyond just the physical changes. It involves coordinating care and promoting the person’s overall health and well-being.

This care can look different for each patient, depending on the cancer they have and their individual needs. For example, my team and I designed a survivorship clinic at UPMC in Pittsburgh, Pennsylvania, to address the most common issues head and neck cancer survivors experience. In addition to surgeons and nurses, our team includes swallowing therapists, a physical therapist, a dental care team and a dietitian to help address issues with swallowing, nutrition, dental health, physical function and mood. All of these services are offered at the same location and can be completed in one visit on the same day, generally under one copay.

After the visit, the cancer survivor, their oncology team and their primary care clinician receive a care plan to help coordinate care and communication among all their providers. Rather than as a one-time session, our survivorship clinic builds relationships with survivors, supporting them as their needs change over time.

Timing matters for cancer survivorship

While a person becomes a survivor at the time of diagnosis, most survivorship care is delivered after the initial treatment has ended. This may be partly because to be accredited by a major medical body that sets cancer care standards, the American College of Surgeons Commission on Cancer, hospitals must offer at least three services to cancer survivors after they complete their initial treatment.

While survivorship care can ease physical and psychological issues after cancer treatment, survivors often report significant unmet needs before and during treatment.

In my specialty of head and neck cancers, many patients undergo a grueling five to seven weeks of radiation therapy, often in addition to chemotherapy. They experience a host of side effects: pain, mouth sores, skin burns, difficulty swallowing and weight loss, which together can lead to treatment interruption and hospitalization. These side effects often continue and sometimes worsen years after treatment.

While our survivorship clinic was initially designed for patients who completed treatment, we later expanded our services to patients before radiation. We previously found that starting survivorship care before radiation was associated with better quality of life and reduced symptoms.

In our newly published research, we found that among 471 cancer survivors, 62% of those who attended our survivorship clinic before completing radiation finished treatment on time, compared with 48% of those who were not seen before completing radiation. At three years, 60% of patients seen in the survivorship clinic before completing radiation were alive and cancer-free, compared with 39% of those not seen before completion. The association remained after accounting for whether patients completed radiation on time, suggesting that on-time completion may not fully explain the difference.

Although our results suggest that shifting the start of survivorship care to before treatment may improve outcomes, they do not prove it. Our team plans to test in a larger clinical trial whether starting survivorship care before radiation helps patients finish treatment on time and maintain quality of life, while also examining how teams coordinate care and referrals.

Survivorship care is not universal

Comprehensive cancer care implies not only a comprehensive treatment plan, but also supportive care that will help patients live well beyond their diagnosis and treatment. However, a 2024 survey of 384 facilities accredited by the American College of Surgeons Commission on Cancer found that only 1 in 5 programs estimated that most of their eligible patients receive survivorship care.

For head and neck cancer survivors specifically, nearly all clinicians routinely assess cancer recurrence, swallowing and thyroid function. But only about half address psychological symptoms, such as anxiety and depression, and fewer than 1 in 3 addressed body image or sleep problems.

Survivorship care is often framed as care that begins after treatment ends, which can delay patients’ access to support during treatment. Communication breakdowns may leave patients unaware of available services, while a lack of referrals can keep them from receiving needed care. Survivorship care also draws on clinicians with different areas of expertise, and some hospitals and treatment centers may lack enough dedicated staff time to provide a full range of services.

Thinking ahead in cancer care

The end of treatment is a huge milestone that patients and their loved ones reach for. But it is not where survivorship care truly starts.

Making survivorship care more accessible may help make cancer care more comprehensive. Clinicians and researchers can start planning for the survivor’s life after cancer even when it’s not on the patient’s mind. Bringing a team that combines treatment experts with rehabilitation and supportive care specialists into the room early can help achieve better outcomes for patients.

As a cancer survivor or a loved one, you don’t need to wait.

Marci Lee Nilsen, Professor of Otolaryngology, University of Pittsburgh

This article is republished from The Conversation under a Creative Commons license. Read the original article.