As a follow-up to “Preparing Patients for Palliative Expectant Management” (OT 10/10/15 issue), this patient handout addresses the watch-and-wait (WAW) approach to cancer. My next column will present a patient handout on palliative active surveillance (AS).
Since the distinction between WAW and AS is not uniformly accepted, let me clarify that I've designed this handout for situations where you have no curative treatment options and you will follow the patient with few, if any tests (all non-invasive). Feel free to edit this handout to better meet your needs.
With hope, Wendy
Understanding Watch and Wait
Our goals are to help you make the best treatment decisions and to help you live your best life every step of the way. Please read this handout on watch and wait, a treatment approach for your cancer. With so much myth and misinformation surrounding watch and wait (also called watchful waiting), we want to ensure that you know the facts about what it offers, why we recommend it, and what it would mean for you.
What is watch and wait?
Watch and wait is an approach to cancer treatment in which we delay treatment to avoid overtreatment. We will not begin treatment unless you develop symptoms and/or the results of certain tests indicate that it is time to begin.
We recommend watch and wait when no curative therapies are currently available and the benefits of waiting to begin anticancer therapies outweigh the risks.
How is watch and wait done?
Your unique situation will determine how often you have checkups and which, if any, diagnostic tests will be performed. We will review with you which symptoms and/or test results would trigger the start of anticancer treatment.
Why is watch and wait an option for me?
Watch and wait is recommended because:
- Your cancer poses no immediate risks and is not causing significant symptoms;
- Anticancer treatment would be just as effective if started later (in response to certain symptoms or test results) as if started now; and
- Symptoms and non-invasive tests provide all we need to time the start of treatment optimally.
What does watch and wait have to do with the timing of treatment?
Watch and wait personalizes the timing of when we begin anticancer therapies for you—not too soon and not too late. Delaying treatment helps you get on with your life now without the rigmarole of office visits, needle sticks, and side effects of treatment. Since this approach won't jeopardize your chance for the best outcome, you can confidently let cancer drift into the background as much as possible for as long as possible.
Keep in mind that researchers are working constantly to develop more effective and less toxic treatments. It's possible that if you need treatment in the future, we may have an additional treatment option that is better in some way than today's options.
What if watch and wait feels like I'm just waiting for problems?
Some patients feel like they are just waiting for problems, so they call this approach “watch and worry.” Actually, the “wait” part of “watch and wait” means we are holding off (that is, waiting) on starting treatment. We are not passively waiting for problems, but actively avoiding the problems of overtreatment. We are timing treatment to minimize the risks and maximize the benefits, both now and later.
Is watch and wait the same as active surveillance?
No. Both approaches (active surveillance and watch and wait) fall under the category called expectant management, which is defined by delaying the start of active cancer treatment to avoid overtreatment. But compared with watch and wait, active surveillance involves more frequent and more invasive testing, including biopsies.
Many people mistakenly use the two terms interchangeably. Recent progress in cancer tests and treatments has led to differences in how the terms are defined by different doctors. So if you hear other patients talk about their watch and wait plans, don't draw conclusions about you. Their doctors may mean something different than we do. Their situations may be completely different than yours. We will clarify what watch and wait means for you.
How long can we do watch and wait?
We can continue this approach for as long as your cancer continues to pose no threats to your health or quality of life. Some patients do watch and wait for a very long time. If you develop symptoms and/or your test results indicate a change that warrants a change in treatment approach, we will stop watch and wait and begin active anticancer treatments.
Why not treat my cancer now, before it progresses?
We know you have cancer now. The idea of not treating it is unsettling, to say the least. Everyone has been taught that early treatment is the key to survival. Indeed, that's true for many cancers. But in situations like yours, delaying anticancer treatment provides the same survival benefits as starting right away. The advantages of delaying treatment outweigh any disadvantages of holding off on treatment. Put another way, the disadvantages and risks of starting treatment now outweigh the advantages.
Many people struggle with the idea of watch and wait when they first hear it. But excellent studies with reliable statistics tell us that treatments will be just as effective if started later. The key message is that this approach protects you from overtreatment without jeopardizing the outcome. While doing watch and wait, you can get on with your life, free of the burdens of treatments. That's progress!
What is the downside to watch and wait?
Perhaps the only significant downside of watchful waiting is the associated anxiety many people experience at first. It's normal to feel an urgency to treat the cancer so you can feel like you're doing something. That anxiety often resolves as you adjust to the routine. Many patients benefit from one or two visits with a counselor and/or short-term anti-anxiety medication through the adjustment phase. If anxiety still persists, we can—and will—deal with that, too.
- We are not waiting for problems; we are avoiding problems of overtreatment;
- We are delaying treatment—and not your change for the best outcome; and
- We are actively optimizing your quality of life, now and later.
What if I agree to watch and wait and then change my mind?
We want you to know all your treatment options, including clinical trials. If after a period of watch and wait you want to revisit your other treatment options, we will discuss the risks and benefits of each treatment option available to you.
Adjusting to watch and wait involves accepting the uncertainty surrounding if or when you might need to begin treatment. Please keep us fully informed of how you are feeling, physically and emotionally.
Please ask for referrals to support services (online and in-person) designed to help you process the medical information, make wise decisions, and manage the uncertainty. Some services can put you in touch with patients who have experienced watch and wait, active treatment, and clinical trials. Hearing from patients about the ups and downs may help clarify the issues involved.
With the goal of this treatment approach in mind, consider using our nickname for watch and wait: “watch and live.” As you move forward, take comfort in the knowledge that by avoiding overtreatment you are making it easier to live your best life today, tomorrow, and every day.