Time toxicity in cancer treatment: What is it, and how can we minimize its impact?

June is National Cancer Survivorship Month. This month, we sat down with medical oncologist and MCC researcher Arjun Gupta, MBBS as well as caregiver, advocate, and founder of The Negative Space, Allison Breininger, for a discussion about the experiences of caregivers in cancer survivorship, particularly the burden of something our researchers are calling “time toxicity,” or the significant time investment required for cancer care.

Be sure to join us for our Fireside Chat on June 11, where Dr. Gupta and Allison will be our special expert guests!

How would you define time toxicity in the context of cancer care, and what are its impacts on both patients and caregivers?

Dr. Gupta: Time toxicity in cancer care refers to the burden of time that patients and caregivers spend interacting with the healthcare system. This includes not only lengthy treatments or hospital stays, but also seemingly minor commitments like short appointments or routine blood draws. 

Even brief interactions with the healthcare system can be disruptive and exhausting, particularly for those already coping with the physical and emotional demands of cancer. For caregivers, this time burden often translates into missed work, emotional strain, and logistical challenges. Overall, time toxicity adds another layer of hardship, making it an important but often overlooked factor in evaluating the true cost of cancer treatment.

Can you tell us about The Negative Space—what it is, and what inspired you to create it based on your experience as a caregiver?

Allison Breininger: The Negative Space is a nonprofit organization that I created with my husband with the goal of changing the way caregivers of all kinds are seen and supported. Our name is inspired by the artistic concept of negative space, which is everything in the background of a picture that is vital yet often overlooked. At The Negative Space, we provide direct services to caregivers, such as the In Sickness podcast, virtual support groups, 1:1 coaching, caregiver gift boxes, and an online resource hub called The Storyline, which was designed to support caregivers through every chapter of their caregiving lives. We also provide education and tools to those in the position to support caregivers, such as medical students, medical professionals, faith leaders, etc. 

I was inspired to create The Negative Space when I experienced firsthand that the impact of my caregiving experience was largely unseen and that caregivers seemed hesitant to talk about their caregiving challenges. Here I have created a space for open honest conversation around the realities of caregiving.

What role do caregivers play in the cancer care journey, particularly in relation to time toxicity?

Dr. Gupta: Caregivers play a crucial and often under-recognized role in cancer care, especially when it comes to navigating time toxicity. Because cancer treatment frequently requires multiple appointments, tests, and follow-ups—many of which consume an entire day even if the actual clinical interaction is brief—caregivers are often the ones managing the logistics. This includes driving patients to and from appointments, waiting through procedures, and adjusting their own schedules around treatment and care.

Ultimately, caregivers are essential in helping patients navigate the complex and time-consuming nature of cancer care, but in doing so, they also bear a significant share of time toxicity themselves.

Allison Breininger: Even short medical appointments can take large chunks of time including travel and wait time, etc. This often requires caregivers to take time off of work or to rearrange their schedules. Caregivers also spend large amounts of time behind closed doors performing tasks such as wound care, medication management, paying bills, and fighting with insurance. While moving towards more care in the home can feel like progress for patients, it often leaves caregivers with more work - and work for which they are often not trained, paid, or acknowledged.

Are there any strategies or resources available to help patients and caregivers reduce the burden of time toxicity during cancer treatment?

Dr. Gupta: Yes, there are strategies to help reduce the burden of time toxicity, but they need to address both planned and unplanned aspects of care. Planned time toxicity includes the expected demands of cancer treatment, such as how often treatment is delivered, how it’s administered, and what kind of monitoring is needed as a result. While these are time-consuming, patients and caregivers often find some relief in being able to anticipate and plan around them. One example is knowing they'll need time off on Monday, Wednesday, and Friday for treatment.

The greater challenge often comes from unplanned time toxicity: the unexpected trips to the clinic or hospital due to treatment side effects like nausea, dehydration, or diarrhea. These events can be unpredictable and disruptive, adding significant emotional and logistical stress for both patients and caregivers.

To reduce this burden, some strategies include:

• Consider regimens that require fewer visits or offer oral therapies when appropriate.
• Providing patients with supportive medications and clear instructions can help them manage side effects at home and potentially avoid emergency visits.
• Technologies like at-home symptom tracking or telehealth check-ins can reduce the need for in-person visits.
• Nurse navigators or case managers can help streamline care, reduce delays, and minimize unnecessary appointments.

Ultimately, reducing time toxicity involves not just managing how cancer treatment is delivered, but also anticipating and preventing the ripple effects that unplanned health events can create in patients’ and caregivers’ lives.

Allison Breininger: Caregivers can advocate for appointment types and schedules that meet the needs of their families. For example, when scheduling appointments, they can request that lab draws occur at the clinic closest to their house, that clinic appointments are stacked on the same day to avoid multiple trips, or that appointments are held virtually when possible. 

How is your research / work advancing understanding of time toxicity and how we help cancer patients and caregivers minimize its impact?

Dr. Gupta: Our work is focused on identifying and reducing the time toxicity that cancer care places on patients and caregivers. We're addressing this in several key ways:

1. We're working with clinics to streamline care by coordinating appointments so that multiple needs can be met in a single visit, or even virtually when appropriate. This helps reduce travel time and the number of full days patients must dedicate to care.
2. We're advocating for clinical trials to not only evaluate the effectiveness and side effects of treatments, but also to measure and report the time burden associated with them. This helps ensure that time toxicity becomes part of the decision-making process for both doctors and patients.
   
3. We're urging insurance providers to support models of care that reduce time burden—like at-home treatments and telehealth services—so patients don’t need to be physically present for every aspect of their care.
   

By better quantifying how much time patients spend navigating the healthcare system—from waiting rooms and infusions to phone calls with insurance companies—we empower patients to make more informed choices. For many, spending that time with family and friends becomes increasingly important. Our goal is to help ensure that the care we provide not only extends life when possible, but also respects the value of the time patients have.