Panic typically follows a cancer diagnosis. Few patients can think clearly about their choices. The usual response is to stop thinking and to let their doctors (or their loved ones) make decisions for them.
This is understandable-but it can be harmful to the patient. Even at the best hospitals, cancer care tends to be chaotic. The primary physician might not know what the oncologist is doing. The oncologist might not communicate with, or might disagree with, the surgeon or radiologist.
Here's how to take charge of your care…
Understand Your Pathology Report
It contains critical information about the type of cancer you have and how advanced it is. These reports are based on the microscopic findings of a biopsy.
It's rare for a biopsy to be completely incorrect, but even slight points of confusion can lead to ineffective treatments.
Example: One of my cousins passed away after he was diagnosed with a spinal tumor. The pathology report said that the tumor originated in the large intestine. Years later, I reexamined the biopsy sample and discovered that what he really had was a lung cancer—which requires totally different treatments.
Get a copy of your report, and talk to your oncologist to find out what everything means. Does the report seem to waffle with words or phrases such as "ranging from or "possible"? These indicate that there's uncertainty about the findings. You need to understand if the tumor is aggressive" or "slow-changing," or whether the cells are "poorly differentiated" (which means it might be hard to identify the specific cancer).
Important: You may want to get a second pathology opinion, particularly if the diagnosis seems unusual for someone of your age or lifestyle.
Choose Your Oncologist
The oncologist is the point person who will supervise—and, in many cases, determine-your treatments. You want someone who is more than just an expert. He/she should also be a good listener...understand your concerns about quality of life...and help you cope with the emotional upheaval. To find such a person…
- Talk to people you know. A good oncologist will have a reputation in the community for being helpful as well as knowledgeable. A doctor might be a world-class expert, but that won't help if he/she won't return phone calls or always shifts your care to an assistant.
- Plan a tryout. Before committing to one oncologist, schedule a tryout visit to decide if you can trust this person with your life.
Helpful: Listen for 'we" statements, such as, "We need to treat this" or "We have to get these tests done." The use of "we" instead of "you" is a good clue that the doctor plans to be closely involved with your care.
Bond With Your Doctor
Cancer patients are understandably frightened, which can make them difficult and/or argumentative. Many oncologists avoid or even drop difficult patients. Be respectful and courteous. Try to get to know your oncologist and his/ her staff. Whenever possible, meet with your oncologist face-to-face, rather than telephoning or e-mailing your concerns.
Just as you would expect your sister-in-law or trusted uncle to give you the real scoop, when you make the oncologist your friend, you may get a more complete opinion.
Bring A Second Set Of Ears
Whenever possible, bring a friend or family member every time you meet with the oncologist. Most patients are too anxious to concentrate on details, including information about follow-up tests, treatment plans, etc. A friend or relative can take notes for you and ask pertinent questions.
Decide Where You’ll Get The Best Treatment
It's usually advisable to go to a hospital or cancer center close to where you live. This is where you are at your most comfortable and where the emotional support of your family and friends is at its strongest. Also, complications, such as infections and blood clots, are common in cancer patients. You might need emergency care, and it's always preferable to see doctors who know your history.
In general, I advise patients to go to a major cancer center only if they already live near one of these institutions...have a rare cancer...or require specialized treatments or surgery that can be provided only by a leading institution Patients who are candidates for research studies also may benefit by going to a major center.
Listen To Your Doctor, Not The “Board”
In large cancer centers, patient treatments are routinely reviewed, and sometimes guided by, recommendations from a "tumor board." This is a weekly discussion group that may include surgeons, medical oncologists and radiation oncologists, among other specialists. You can and should receive a written copy of the board's opinions. Ask for a transcript.
The problem: A tumor board is a good source of second opinions and specialized knowledge, but most of the doctors who attend have never seen the individual patient and may not be aware of his/her unique circumstances.
Follow the treatment suggestions of the oncologist who has interviewed and examined you directly-even if his conclusions differ from those of the tumor board.
Ask About Research Studies
This is mainly an issue for patients who are getting treatment at major cancer centers (which focus on research) or those with rare or difficult-to-treat cancers. Clinical trials may offer patients the best treatment, but there's no guarantee of this. No one should delay mainstream treatment in hope of being accepted into a clinical trial.
Patients who are seriously ill can lose valuable time when they wait to be admitted into a study. Patients often think that getting into a study means that they're going to get a better drug or therapy. Not necessarily. I've seen many patients in these studies get worse because the "cutting-edge" treatment turned out to be inferior to the already available treatments.
Caution: If you're a candidate for studies, pick one carefully. Review the study and your circumstances with your doctor (not someone who is involved with the study). Patients who participate in clinical trials may be prohibited from participating in certain other clinical trials. Understand whether this applies to you before you sign up for any clinical trial.