In my last column (3/10/11 issue) I addressed the thorny issue of introducing healthy long-term survivors to late effects, urging clinicians to find a way. Some of you may have thought, “Sure, that's easy for Wendy to say from her cozy study. She's not responsible for newly diagnosed patients and sick people in treatment, as well as the healthy long-term survivors.”
Please understand: I appreciate the time pressures and emotional demands on today's clinicians. I readily sympathize with any desire to postpone discussions of late effects until the elusive slow day at the office. But we all know the secret is already out of the bag.
Every day more survivors learn about late effects when they listen to the news, read survivorship magazines, and log onto cancer listservs. And, unfortunately, most of these sources do not provide a context to help survivors interpret and respond to the risks in healing ways.
For me, the crux of the problem is how to efficiently and compassionately introduce late effects in your office. One tool I often used in my practice to introduce patients to a medical issue was the one-page handout, because:
- Limited investment yields high-quality material that serves many patients well.
- Nurses and allied health professionals can review the material with patients.
- Patients can process the material at their own pace in the office and/or at home.
Over the next few months, I'll use this column periodically to provide sample handouts on late effects. For example, one will be for patients who are making treatment decisions. Another will be geared to patients who received radiation therapy. My hope is that these handouts facilitate the sharing of information in non-threatening, hopeful ways.
Today's handout targets healthy long-term survivors in remission and offers a general introduction to late effects. Feel free to edit and use it in whatever way you wish. As always, I welcome your feedback because it helps me serve you better.
With respect and hope,
Introduction to Late Effects for Patients in Remission
This handout will introduce you to a relatively new topic in survivorship: late effects. We believe that by learning about late effects, you can continue to work together with us to take good care of you.
What are late effects? Late effects are changes that first appear months or years after completing therapy and are due to prior cancer or cancer treatment.
How are late effects expressed? Late effects can manifest as:
- A sign (example: an abnormal blood test result)
- A symptom (example: trouble breathing)
- An increased risk of a particular medical problem (example: vulnerability to a specific infection)
How does cancer or its treatment cause late effects? When cancer or its treatment injures healthy tissue that the body cannot repair completely, the changes can lead to late effects over time.
Why is there a delay between the end of treatment and the appearance of late effects? In most cases, mild injury to healthy tissues remains insignificant until additional injury and/or age-related decline occurs that unmasks the treatment-related changes. In some cases, treatment triggers small changes that continue to slowly progress after completion of treatment, becoming detectable years later.
Does every patient develop late effects? While all long-term survivors can expect some long-term changes due to past treatments, most patients do NOT develop serious late effects of treatment.
Keep in mind that your personal risk may remain very small, even if your risk of a particular problem is greater than for people who never had your treatments. For example, imagine survivors' risk is increased to 4 times normal for a problem that usually occurs in 1 out of every 1,000 people. These survivors' risk is still small. That's because only 4 out of every 1,000 survivors will develop the problem, while 996 survivors with the same increased risk will not develop the problem.
Why do I need to know about late effects? Sound knowledge about late effects may:
- Alert you to steps you can take to decrease your overall risk of certain late effects.
- Enable you to report problems early, when many are more treatable.
- Help you interpret in healing ways what you learn elsewhere about late effects.
What if learning about late effects makes me upset? It is perfectly understandable if you don't want to think about late effects. Take your time; there's no rush. Once you learn what you need to learn, the distress will likely fade away, and your knowledge will help you from now on.
What now? As researchers continue to learn about late effects, we will work together to minimize your risks and to detect problems early. Our goal is to help you live each day as fully as possible.