Receiving a cancer diagnosis can leave patients feeling overwhelmed, confused and frightened. While these reactions are natural, cancer patients must play a major role in their own treatment. Asking the right questions is an important first step.
Cancers are identified by the organ in which they originate. In other words, breast cancer that spreads to the lungs is still breast cancer. This is very important, as breast and lung cancers, for example, have different root causes and are treated differently.
Cancers stages are measured on a scale of 1 to 4, with 1 being the earliest stage. However, the consequences of a more advanced cancer vary with the cancer. Testicular cancer can spread throughout the body and be completely cured. Stage 4 pancreatic cancer has a very poor prognosis.
Most often, cancer is diagnosed with a biopsy, which is interpreted by pathologists. Patients should always ask for a copy of the pathology report. This will help them better understand the type of cancer, whether it has spread to lymph nodes, and other important information. They should also keep track of which imaging tests were done —mammograms, CT, MRI and PET — and get copies of these reports.
They should ask about whether molecular testing (diagnostics that determine which mutations are driving the cancer) is appropriate. Knowing the genomic underpinnings of the tumor may influence treatment. If the cancer could have a genetic cause (for example breast cancer), ask to meet with a genetic counselor to determine whether genetic testing would be appropriate.
It never hurts to get a second opinion, and having all the reports will expedite this process. But patients should proceed quickly. Once treatment has begun, it’s often difficult to take a different course.
There are three basic forms of treatment: surgery, radiation and chemotherapy. Depending on the type and stage of your cancer, your treatment team may recommend one or more forms of therapy.
Patients should know the treatment goals. Is the team working to cure the cancer or slow it down? Sometimes treatment may prolong life but will not eradicate the disease. Also, some treatments, such as Imatinib for chronic myelogenous leukemia, work to transform cancer from a deadly disease to a chronic disease, much like diabetes.
Clinical trials are often available, however eligibility criteria vary, and not every patient will qualify. Nevertheless, patients should always ask their physician about clinical trial availability.
Cancer treatments may have debilitating side effects. However, newer treatments can be less toxic. Patients should understand the consequences of treatment: the long- and short-term side effects, whether home care will be needed, how much medical leave from work might be required. Will transportation be needed and, if so, are shuttles available?
On the business end, will treatments be covered by insurance? Co-pays can add up. What will the out-of-pocket expenses be? A case worker or financial counselor can help with these and other financial issues.
Cancer patients should know their medical team: medical oncologist, surgeon, radiation oncologist, nurse navigator, social worker and others. Even more importantly, who is going to be the quarterback, coordinating care, ensuring nothing falls through the cracks and providing long-term monitoring or survivorship care?
These questions should provide a starting point and basic framework for gathering key information, which will help patients make knowledgeable care decisions.