My Sept. 25th column (http://bit.ly/16Recjj) discusses some of the challenges patients face when diagnosed with recurrent cancer. The patient handout below can serve as a tool to help patients adjust to the diagnosis and gain confidence in dealing with their situation.
Feel free to use this text as a template for a personalized letter to your patients. Or simply copy and give it out to reassure patients that you understand—and care about—what they are going through and that you can help.
Facing Recurrent Cancer
You are receiving this handout because of your diagnosis of recurrent cancer. Recurrence is different from an initial cancer diagnosis. So we want to offer some insights and words of advice to help you adjust and move forward in healthy ways.
Keep two important points in mind. First, recurrence is an illness that needs evaluation and treatment (i.e., it is not a death sentence). Second, recurrence happens, even if everyone does everything right (i.e., this is not your fault).
The Challenge of Recurrence
Most people are shocked by their first cancer diagnosis, even if throughout their evaluation they suspected—or expected—a cancer diagnosis. That initial shock buffers fear, making what's happening feel surreal “like a dream.”
In contrast, most patients tell us that recurrence feels real from the moment they learn the news—certainly more real than the original diagnosis. And that means facing cancer without the comforting cocoon of shock.
If you are still recovering from your initial treatment when diagnosed with recurrence, you haven't had enough time to recover physically or emotionally. It can feel like beginning a long journey on a quarter tank of gas. If your recurrence develops after a long remission, the news can shatter your confidence in the future that you worked to rebuild over the years. Having already paid the price of treatment and recovery, recurrence can feel especially unfair.
Whether your last treatment was a just a few weeks ago or years ago, the idea of undergoing cancer treatment is not some vague horribleness ahead. You can easily recall the discomforts and inconveniences of needle sticks and pills, side effects and scans, and waiting for appointments, tests, and treatments.
This time, some friends and family who supported you through your original cancer treatment may seem less optimistic or hopeful. Some may even disappear without a word.
You Are Not Back to Square One
Recurrence is never good. But in certain ways you are in a better situation than when first diagnosed. That your cancer recurred provides useful information about your specific disease, information we couldn't possibly know the first time around. So now we'll use first-line treatment for patients with cancer like yours—for disease that recurs after the treatment you received.
In addition, you now have valuable experience in survivorship. You already know about sharing a diagnosis, garnering support, maintaining nourishment, getting through treatments, and balancing cancer treatment with everyday life. Regarding practical and emotional issues, you have a sense of which approaches and techniques work for you—and which don't. You know whom you can count on and who drags you down.
The bottom line is that there's no way to make this an easy time. For most of you, dealing with recurrence is upsetting until you adjust to the news and decide on a plan of action. Still, you can take steps that help.
The Key Tasks
For now, try to stay focused on:
- Determining your current medical situation;
- Exploring all treatment options, including clinical trials;
- Making wise decisions about treatment, work, home;
- Controlling pain and other symptoms; and
- Managing the practical issues.
It matters less what you feel than what you do with what you feel. Find a safe place to express your normal fears, anger, pessimism, and grief—without someone trying to cheer you up or make it better.
That said, please be sure to let us know if thoughts or feelings are making it difficult to sleep, eat, or talk with your family or close friends. You may need temporary assistance (such as short-term counseling and/or medications) to help you think, feel, and act more like your normal self while adjusting to the news.
As we see it, you show strength and wisdom if you report distress to us and accept help through this transition. If needed, counseling and/or medication can provide the only way to regain some sense of control over what's happening and optimize the outcome.
Dealing with Your Imagination
One of the great challenges of recurrence can be reining in your imagination. While expressing natural emotions helps, putting boundaries around frightening projections about the future is essential, too. Unbridled fears about tomorrow only distract you from taking care of today. Worrying about tomorrow wastes precious energy, especially if none of the things you fear ever come to pass.
Keep yourself from indulging in visions of terrible outcomes by finding ways to interrupt them. Maybe all you need is a mantra, such as “Worrying about tomorrow wastes energy I need today” or a rule, such as “I will not let my imagination go there.”
Feeling hopeful after recurrence may be more challenging than after your first diagnosis. But there is always hope. You have reason to feel genuine, strong hope of a better tomorrow.
In the short run, let's focus on the hopes of making wise decisions and keeping you comfortable. After deciding on treatment, let's hope to do all we can to help treatments go smoothly and to optimize the outcome.
Whatever is happening, let's hope to do all we can to help you get good care and live as fully as possible today, tomorrow and every day.