NEW YORK (Reuters) - When we were told our son had a potentially life-threatening brain tumor, our family was lucky to have world-class doctors and hospitals close to home and health insurance that covered nearly all his medical expenses and prescription drug costs.
These resources helped us make a difficult decision regarding treatment, a scenario many more families may face as modern medicine evolves. Here are some questions they may want to consider, based on our experience and interviews with cancer experts:
Major academic medical centers now often sequence tumor tissue to look for genetic aberrations. The answers they get help provide a more precise diagnosis, shed light on the expected course of a patient’s disease, and in a minority of cases, match a patient with a specific treatment that targets an abnormality, including experimental or unapproved therapies in clinical trials.
Such hospitals may also incorporate the data into their research on genetic mutations that drive disease, and frequently cover the expense of testing when insurance does not. The use of testing received a big boost in March, when the U.S. government said it would cover next-generation sequencing tests for Medicare patients with advanced cancer to search for mutations in several hundred genes.
Cancer experts recommend that patients discuss with their doctors whether sequencing of tumor tissue could help guide treatment and get a realistic assessment of whether it will benefit them. The use of such tests is expected to grow as new targeted therapies that work against many types of tumor with the same mutation come to market.
“Patients should be asking about it because it’s a part of framing out their treatment options these days. They should get good, clear, objective information about the pros and cons of doing it,” said Dr Richard Schilsky, chief medical officer at the American Society of Clinical Oncology (ASCO).
Patients have long been urged to consider a second medical opinion when they receive a life-changing diagnosis, but many still don’t seek one. Studies show that added information can change the course of treatment in nearly 40 percent of cases, potentially reducing complications and cost.
ASCO stresses here that the rapid evolution of treatment options makes it all the more important to find a doctor who knows about a patient’s particular type of cancer. The National Cancer Institute provides a primer here on what to look for in a second opinion.
Getting a second opinion will at least provide additional insight into a patient’s diagnosis, even if the second doctor agrees with the treatment plan. Dana-Farber Cancer Institute in Boston estimates that 40 percent of its first-time appointments are for patients seeking a second opinion.
Many major medical centers, including Memorial Sloan Kettering Cancer Center in New York, MD Anderson Cancer Center in Houston, Seattle Cancer Care Alliance and Mayo Clinic in Rochester, Minnesota, offer some form of second opinion services. If a patient cannot travel for an in-person appointment, Dana-Farber, MD Anderson and UCSF Health in San Francisco, among others, also offer remote consultations based on a review of medical records, with a written report of recommendations that may be shared directly with the patient or with their treating physician. These services are available for U.S. residents and may be offered to international patients, depending on the institution.
Given the rapid pace of new discoveries, finding the doctor who knows the most about a specific condition can take time, and even then, the doctor may be far away. It’s worth asking your own doctor, as well as consulting with other people you may know in the healthcare profession, for recommendations on the best experts.
In considering recommendations for a rare type of cancer or a newer treatment, ask the doctor how many such patients they have treated with these therapies, and what the outcomes were.
Patients should also consider repeating pathology and sequencing tests as part of their second-opinion process. Different institutions may have techniques that are better at detecting or analyzing specific abnormalities that influence care. MD Anderson said it changes a new patient’s initial diagnosis from another hospital up to 25 percent of the time when it reviews pathology testing.
The services are costly, ranging from a few hundred dollars to several thousand, depending on the type of consultation and the need for additional testing. They may not be covered by insurance, or involve high out-of-pocket contributions, making it especially important for each patient to check with their individual health plan. In-person second opinion visits are more likely to be covered by Medicare and employer-sponsored insurance, while online or remote consultations are often not reimbursed.
Also keep in mind that the answers you receive may change, sometimes within months, as new data are published. You may want to touch base with the other experts you have consulted when it’s time to make new treatment decisions.
“There is almost always time for a second opinion,” said Schilsky. “And where those second opinions could potentially result in a change in the treatment course, you’d want to know that.”
Edited by John Blanton