|Taking Charge of Follow-Up Care|
Every cancer patient looks forward to the day when the doctor says that treatment is finally complete. At that point, the end of cancer treatment signals the beginning of a new journey: survivorship.
Although you and your doctor may talk about the risk of a cancer recurrence down the road, it is also important to talk about “late effects” of treatment -- side effects that may not become apparent until years later -- and your overall plan for follow-up visits and cancer prevention.
Write it Down
Health care professionals now recognize that they need to better prepare patients for this next phase of life. Yet patients may need to take the reins in this area until formal survivorship plans are developed. This means they will need to schedule appointments for follow-up testing; communicate appropriate information to each of their doctors; and engage in healthy lifestyle practices.
Pediatric oncologists are leading the way in survivorship initiatives, thanks to the long-term survival of children with cancer. While the experts work out the details, make sure you document the following to start building your own survivorship plan:
“If you don’t know the answers, call your physicians and get them,” urges Lidia Schapira, M.D., medical oncologist at the Gillette Center for Breast Cancer at Massachusetts General Hospital Cancer Center in Boston and assistant professor of medicine at Harvard Medical School. The more details you can get, the better, she says.
Create Your Own Medical Record
Electronic medical records are still not widely used or required by the federal government, but you can improvise by creating your own. In addition to documenting the basics, you may want to record more detail, including:
You may also choose to include:
To protect your privacy, do not record your Social Security number on any of the documents.
Collect this information on an ongoing basis. Near the end of your treatment, ask the doctor or nurse practitioner who is handling your care if he or she would review your “medical record” and notes for accuracy.
You may want to:
Just as patients with allergies or certain diseases wear bracelets to alert medical personnel, your record provides valuable details to better manage your medical care, prevent complications, or save your life.
For example, patients who once received the chemotherapy drug bleomycin may have developed diminished lung capacity, which would need to be communicated to an anesthesiologist before any future surgery. And because the drug doxorubicin can affect cardiac function, former cancer patients need to relay this information to both their primary care doctor and specialists.
Make a Plan
Because cancer treatment usually involves multiple medical professionals, people may be confused about whom to see for follow-up care. Do they return to their primary care physician or schedule visits with specialists or their oncologist?
Start by asking your oncologist if you should schedule follow-up appointments with him or her and, if so, for how many months or years. Ask if and when your care should be turned over to your primary care physician or nurse practitioner.
If your care is assigned to your primary care professional, provide him or her with the medical record you created, as described above.
Professional associations including the Institute of Medicine and the American Society of Clinical Oncology, as well as the Lance Armstrong Foundation, are working to create formal guidance to physicians on creating survivorship plans.
The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) have provided information to doctors about surveillance following completion of therapy, but NCCN is now expanding many of the NCCN Guidelines to include continuing and late effects of various treatments.
Until formal survivorship plans are widely adopted, people who arm themselves with information and documentation about their care will be in a good position to make a smooth transition from cancer patient to survivor.