Supporting our Patients Living with Cancer and Beyond

The number of cancer survivors in the U.S. is expected to exceed 22.5 million by 2032. Today, 70% of patients with cancer are alive five years after initial diagnosis, according to a report from the American Cancer Society.

People often think of survivorship care as managing post-treatment side effects, yet cancer survivorship involves so much more. Whether a patient has been cured, is managing cancer as a chronic disease or has a short time ahead, survivorship care aims to help them to not just live but to thrive.

“Everyone is entitled to live the best life possible,” says Christina Ferraro, MSN, CNP, BMTCN, a nurse practitioner and Director of Survivorship for Cleveland Clinic Cancer Institute. “We empower patients to take ownership of their health.”

“With higher survival and more patients with cancer that’s akin to a chronic illness, it’s important that we ensure more resources and monitoring are in place to help with complex, long-term needs,” says Deputy Director of the Cancer Survivorship program Shannon Balog, CNP.

Purpose

Survivorship is a longitudinal approach to caring for patients, identifying and resolving gaps in care and helping patients navigate life during and after treatment. The Cancer Survivorship program:

• Supports oncologists and hematologists in making treatment decisions that take into account factors such as a patient's organ function and comorbidities prior to treatment
• Provides informational tools to patients and providers to understand treatment risks
• Proactively addresses potential short- and long-term complications from treatment such as infection as well as heart disease, lung disease, thyroid dysfunction, endocrine dysfunction and secondary cancers
• Ensures the patient’s primary care team is well informed about potential side effects from their treatment and necessary follow-up/screenings
• Offers psychosocial care, financial counseling and other support

"Patients don't necessarily know what to look for or the risk they face after treatment, explains Ferraro. “You can tell them beforehand but they're not likely to remember it because they're getting so much information at the time and it can be overwhelming."

Background

A survey of 384 healthcare facilities found gaps in intervention that could improve the lives of people who have survived cancer. Fertility services and sexual health were among the services less commonly used, despite a high need for this type of care.

As one of its accreditation criteria, the American College of Surgeons Commission on Cancer requires survivorship care for patients treated with curative intent.

Recently, Cleveland Clinic Cancer Institute expanded its survivorship program to include patients with multiple myeloma and metastatic breast cancer. Institute providers can also order a consult with survivorship care for any patient with cancer.

“Patients who have chronic disease are seen so frequently here that they may not make it a priority to see their primary care provider for routine care. We can't become their primary care but we can provide them with written treatment summaries and care plans so their local providers know what to watch for,” says Ferraro. “For example, many patients with breast cancer receive hormone therapy and may not realize they need regular thyroid checks.”

Support services are available to patients across the Institute’s locations in Ohio and Florida. If needed, patients at main campus have access to cardio-oncologists, onco-nephrologists and others who specialize in caring for patients experiencing organ dysfunction following cancer therapy.

Evolving post-treatment needs

As treatments change, so do the late side effects. “We’re seeing more CAR T-cell, TIL and cell therapies as well as immunotherapies that have different long-term effects than earlier treatments,” says Ferraro. Additionally, adverse events from radiation exposure may not present themselves until years after treatment. Survivorship teams can keep primary care providers informed of emerging toxicities and what nuances to watch for.

The Institute embeds survivorship into routine oncology and hematology visits, typically with an advanced practice provider, nurse practitioner, physician’s assistant or clinical nurse specialist as the primary point of contact. The care team also facilitates access to providers with expertise in fertility and sexual health issues that may arise as a result of cancer or cancer treatment.

Discussing survivorship with patients

Many survivor care discussions occur at the time treatment ends or once a patient is stabilized (in the case of patients receiving lifelong treatment). “When someone is in the midst of chemotherapy, they’re not feeling well and we don’t want to overwhelm them,” says Ferraro. “As they start to feel better, that’s often the time to introduce survivorship care. We talk with them about what they’d like their life going forward to look like and how we can help them get there.”

Survivorship providers can also help the rest of the care team broach subjects that might not be addressed during a routine visit, either due to time or because it’s not the focus of the visit. A patient might not talk about the fact that they’re depressed or feeling anxious, or that they have sexual health concerns with their regular care team. These additional visits are an opportunity to focus on a person’s overall well-being.

“It's not just about living, it's about how to keep people healthier, how do we reduce the risk of other side effects and how do we optimize their health,” Ferraro explains.

Navigating multi-factorial impacts of cancer

The effects of cancer can be long-reaching, impacting a person financially, mentally, socially and spiritually. These factors are often interconnected, as Balog explains. “A big part of long-term survivorship is eating a healthy diet, for example, but that’s tough for someone with financial concerns. It all ties together. Our team utilizes every internal and community-based resource to find creative ways to address barriers that an individual is having.”

Forging long-lasting relationships

Patients get to know their survivorship caregivers, who often stay with them for many years or even decades. “I view my patients’ trust as a great honor,” says Balog. “They are going through some of the most difficult times in their lives when they see our team.

Listening and hearing what our patients are saying and how they are feeling are paramount to survivorship care. Having a rapport with your patients really helps with survivorship. It is important they feel comfortable with you to discuss sexual concerns, financial toxicity, mood changes and other personal matters that cancer and cancer treatment can affect.”

What's next

Now in its tenth year, the Cancer Survivorship program continues to expand. Betty Hamilton, MD, and Seth Rotz, MD, are co-chairing an initiative to harmonize and integrate survivorship clinical care and research across the enterprise.