Communicating Effectively with Your Medical Team
A WM patient should try to become knowledgeable about the disease, partner with his or her healthcare team in its management, and be proactive about reporting problems. Patients should familiarize themselves with some of the medical terms, tests, and treatments that apply to WM. For example, newly diagnosed patients should try to be vigilant regarding signs, symptoms, and test results that could indicate the need for treatment, while patients already in treatment should be aware of possible treatment-related side effects. A good way to start building this knowledge is to go to Newly Diagnosed or download our publications.
One of the most important decisions a WM patient can make is choosing a physician to help manage the disease. This person should be board-certified in hematology-oncology and ideally have some familiarity with WM. A patient and his or her physician should share a common treatment philosophy. Some physicians are more aggressive toward treatment or may encourage participation in clinical trials while others may be more conservative in their approach and lean toward older, better-known treatments. A patient’s attitude toward the illness and toward treatment should be similar to that of his or her treating physician. A patient should also feel comfortable with communicating questions or concerns to his or her physician and other members of the healthcare team.
Particularly in the early stages after diagnosis or when considering treatment, a patient should develop a list of questions and concerns in writing so that they can be addressed during appointments. It may be helpful to have a caregiver present to record the answers, as it can be difficult for a patient to absorb and remember all the new information being communicated.
Patients should ask for copies of their test results. Many find it helpful to keep track of their test results over time, as trends are very important in monitoring disease status or in determining the degree of response to treatment. This tracking method might be in the form of a file folder, a notebook, or a computer spreadsheet.
Seeking a Second Opinion
There are times when a second opinion from a WM expert may be helpful, especially when considering a course of treatment. Given the rarity of WM, it is not unusual to see local physicians who have never treated the disease, and many do not have the time to do all the research necessary to keep up on the latest treatments. Even if a patient has already had treatments, it’s not too late to get a second opinion. A second opinion can review the treatment plan to date, offering additional thoughts or recommendations.
The idea of seeking a second opinion may seem overwhelming. It can take time and legwork to find a second physician, arrange for a second opinion, and deal with any insurance issues that may arise. A patient may also be reluctant to tell his or her hematologist-oncologist that a second opinion is desired. But this is not an unusual request, and physicians are used to hearing it. Fortunately, the IWMF maintains a directory of international experts in WM who have agreed to be consulted for this purpose. A WM patient may also want to ask assistance from his or her local IWMF Support Group or from the Internet-based forum IWMF Connect.
Once the decision has been made to seek a second opinion, a patient should ask that medical records and test results be shared with the second physician. This may help to avoid some duplication of tests and facilitate the turnaround time for the second opinion. After receiving the second opinion, a WM patient may then opt to be treated by his or her local oncologist who agrees to follow the recommendations provided by the expert who was consulted.