Dealing with "Time Toxicity" in Cancer Treatment
Suggestions for those frustrated about the amount of time spent in treatment.
Posted August 29, 2022 | Reviewed by Michelle Quirk
- "Time toxicity" refers to the time burden from receiving cancer treatment.
- Understanding the time toxicity involved is helpful for informed treatment decision-making, particularly in advanced cancers.
- Asking questions, taking a "bird's-eye view," and connecting to values can all help patients manage time toxicity.
I feel like cancer is a full-time job.
This is something I often hear from the people I work with who are receiving cancer treatment. Between the trips to the lab for bloodwork, time spent in waiting rooms, long hours in the chemotherapy chair, and days spent recovering from the treatment—cancer takes up a lot of time.
As many patients with cancer would attest, a serious illness highlights how precious time can be. Although improvements in treatment have resulted in longer survival in many cancers, there are some cancers for which the improvements have lagged behind. With treatment, there may be those who may live as little as two to three months longer than if they didn’t have treatment.1,2 If much of that precious time is spent in receiving and recovering from treatment, “How will I spend my time?” may be just as important of a question as “How much time do I have?”
Researchers and clinicians have begun to recognize the importance of assessing the time tradeoffs made when pursuing cancer treatment. All of those hours spent in waiting rooms and hospital beds is labeled “time toxicity,” or the time burden experienced by those receiving cancer treatment.3 A recent study of people receiving treatment for pancreatic cancer found that they spent between 10 and 20 percent of their remaining days alive commuting to, waiting for, or receiving treatment.4 This does not account for time spent recuperating from treatments, coordinating visits, on phone calls with the insurance company, or the impact of missing fun or pleasant events with family due to appointments scheduled.
Preferences and values will understandably vary from person to person, with some people preferring to aggressively treat their cancer, even with a small time gain, while others may want to more clearly define “What I am getting for what I’m giving up?” In any case, celebration of improvements in survival with new treatments should be paired with a clear message to patients about the time burden to expect from treatment so they can make decisions that are in line with their values and preferences.
If you are receiving treatment for cancer and feeling frustrated about the amount of time you are spending in treatment, consider the following suggestions.
1. Ask Questions
I speak with many people who are worried to ask their oncologist specific questions about how much they will benefit from a treatment. If it is important for you to know a time frame of how much your life will be extended by a particular treatment and how much time you will spend in receiving that treatment, please ask. It helps you make an informed decision, just as knowing what kinds of side effects to expect. Your oncologist may not be able to give exact figures, but they likely have research they can draw on with some estimates. You may not want to know, and that’s perfectly OK, too!
2. Take a “Bird’s-Eye” View
It may feel as though your life has always been, and always will be, in cancer treatment. For those who have an end date for treatment, it may be helpful to look at the “big picture”—over the span of your life, how much time has been spent in treatment? Can you think about a future, even if it is a year or more from now, where you won’t be in treatment any longer? This may help put the amount of time in perspective and you can try using it to coach yourself when you're feeling that treatment is never ending.
3. Connect to What You Value
Between the time spent in treatment and feeling unwell from side effects, it can be challenging to stay connected to the things you value. Do a review: Am I still doing the things I enjoyed before cancer? If not, why not? If I’m not feeling well enough, is it possible to adapt what I used to do so I can do a version of it? If you have important events that come up during your treatment, it’s OK to ask your oncologist about shifting treatment days or taking a treatment “holiday” so you don’t miss out. You may be surprised by how willing they are to work with you to make sure you can do what is important to you during treatment.
Del Paggio JC, Berry JS, Hopman WM, et al: Evolution of the randomized clinical trial in the era of precision oncology. JAMA Oncol 7:728-734, 2021.
Fojo T, Mailankody S, Lo A: Unintended consequences of expensive cancer therapeutics-the pursuit of marginal indications and a me-too mentality that stifles innovation and creativity: The John Conley Lecture. JAMA Otolaryngol Head Neck Surg 140:1225-1236, 2014.
Gupta, Arjun, et al. "Time-related burdens of cancer care." JCO Oncology Practice 18.4 (2022): 245-246.
Lim, Szu-Aun, et al. "Opportunity costs of surgical resection and perioperative chemotherapy for locoregional pancreatic adenocarcinoma." JCO Oncology Practice 18.4 (2022): 302-309.