This program gives you the help you need…
“You have cancer” are three of the most frightening words a person can hear.
A hidden challenge: While cancer patients are still reeling from the emotions of a potentially life-threatening diagnosis, they are asked to make some of the most important decisions of their lives. Even with the support of loved ones, all the treatment decisions that must be made can feel overwhelming.
Good news: There’s now a unique approach that can help cancer patients feel less alone.
WHERE TO START
Most cancer-treatment decisions are made within a few weeks of the initial diagnosis. Patients who aren’t thinking clearly are expected to understand what’s happening and make difficult decisions.
A resource worth trying: A free, evidence-based counseling program, called Open to Options, is available nationwide. Developed by the Cancer Support Community (CSC), a nonprofit group based in Washington, DC, the program matches cancer patients with paid professional counselors (psychologists, social workers and marriage and family therapists) throughout the country. They are specially trained to help patients better communicate with their doctors by formulating questions about their treatment options during that difficult period between diagnosis and treatment.
What research shows: Studies of nearly 200 patients have found that those who worked with Open to Options counselors were more informed during meetings with their doctors and were less likely to have second thoughts after treatment decisions were made.
HOW IT WORKS
To find professional counselors in their areas, newly diagnosed cancer patients can use the CSC website, CancerSupportCommunity.org, or call the Cancer Support Helpline at 888-793-9355. They can meet with counselors face-to-face or communicate by phone or e-mail.
Counselors in this program do not answer medical questions or give medical advice. Rather, the counselors are trained to help patients decide what issues are most important to them and should be discussed with their doctors.
After the counselor and patient meet, the counselor creates a one-page summary agenda that the patient will share with his/her doctor. (The agenda can be faxed or e-mailed to the doctor before the patient’s appointment.)
WHAT THE PROGRAM COVERS
When working with a counselor, a patient creates a list of all his questions: “Will I suffer from the mental fog (‘chemo brain’) that sometimes goes along with chemotherapy?” “How long will I be treated?” “How can I minimize side effects?” “When can I return to work?” “Will my concentration or ability to travel be affected?”
When a patient speaks with a counselor, he’ll be guided through a series of steps to answer questions such as…
What’s your situation? You already know you have cancer, and your doctor probably has a good sense of how he will recommend treating it. But your personal situation and values will also influence your decisions.
Example 1: Your doctor might be inclined to treat your cancer with a particular form of chemotherapy, one that sometimes causes hand neuropathy as a side effect. If you mention that you’re an artist and can’t make a living without the use of your hands, he might choose another treatment instead.
Example 2: Your doctor tells you about a new effective oral chemotherapy that costs $20,000 a month. Your insurance covers only 80%. What are the possibilities for payment, financial assistance and therapy?
What are your options? These will depend on your health history and the type of cancer. The counselor will help you formulate some of the most important questions.
Example: You may want to continue working for the next several years. Will you do better with surgery, chemotherapy or radiation? Are the survival rates similar with each treatment? How long will it take to recover from each? What will the side effects be?
Important: Don’t forget to ask the doctor whether a clinical trial (a study of a new treatment) is appropriate. Many people avoid clinical trials because they assume that they might be assigned to a “control” group that receives no treatment. However, in a typical clinical trial, participants are assigned to different groups—one is given the current standard care, and the other is given the new treatment being studied. Placebos are never given in place of treatment.
What are your goals? This goes beyond “surviving” or “being healthy.” Other factors are equally important—or even more important for some people.
Example: You might want to treat your cancer aggressively but not before you’ve attended your daughter’s wedding. Your objective might be simply to wait a bit before starting treatment. You’ll ask your doctor what the ramifications might be.
Who is in your support network? Think about everyone who might be involved in your care—health professionals, your spouse, friends, helpful neighbors, etc.
Will you have someone to help you on the days of your scheduled treatments? Maybe your spouse is available only on certain afternoons. Let your doctor know this—most cancer centers or hospitals have social-work departments that can help you solve logistical problems.
What comes next? You’ll probably have many questions as your treatment progresses. Write them down as you go. If you’re not sure how to formulate your questions—or you’re not even sure what you should know—ask your counselor for help. Even though most patients use the Open to Options program immediately following their diagnoses, they can rely on it anytime a treatment decision must be made. If they like, patients can also work with a specific counselor each time they ask for help.
Important: Even though you may feel inclined to act immediately if you’ve just gotten a cancer diagnosis, research shows that patients have better treatment outcomes and less anxiety when they are well-informed and partner with their doctors in determining the best treatments for them. This may take a bit longer, but the benefits far outweigh the risks.