Being diagnosed with a serious lung disease is a life-changing experience. This is especially true if you are one of the 55,000 Americans diagnosed each year with Idiopathic Pulmonary Fibrosis (IPF), a complex and often misdiagnosed disease.
Temple Lung Center pulmonologist Erin Narewski, DO, says that seeking a second opinion when you are diagnosed with a lung disease, such as IPF, should be a serious consideration. Here’s why:
There’s a big difference between prognoses
The prognosis for most other kinds of interstitial lung disease is comparatively better than that predicted for IPF. So, making sure you have the correct diagnosis is critical to creating the best treatment plan.
A correct diagnosis is also important because each day you go without the right treatment means a potential loss of lung function. Most interstitial lung diseases result in progressive scarring of the lung tissue. Once that occurs, it’s generally irreversible. Effective treatments for interstitial lung disease can stop or slow the progression of the scarring. Ineffective treatments, however, allow scarring to continue and result in permanent damage to the lung. That’s why getting a proper diagnosis is so important.
There’s often no definitive diagnosis
Ongoing research is helping doctors learn more about IPF, but there’s currently no definitive way to diagnose it. Certain tests can give clues to what is happening in the body, but they may not yield a clear-cut diagnosis.
“It’s very easy to incorrectly diagnose interstitial lung disease because there is no single ‘slam-dunk’ test that definitely confirms the type of disease you have,” Dr. Narewski says. “This is why it’s so important to see a doctor who has experience in treating the most complex lung diseases.”
With each patient, regardless of the original diagnosis, the Temple Lung Center begins its evaluation by conducting a new, exhaustive history. Where were you born? What kind of work have you done? What interests do you have? What is your medical history?
Previous test results are also reviewed, and new tests may be run. Often, pulmonologists who specialize in complex lung diseases pick up on obscure findings that are overlooked by physicians without frequent exposure to such cases.
Treatments are individualized
Because of the unpredictable nature of IPF—the disease can stay the same in some patients for years and progress rapidly in others—the course of care is different from one person to the next.
A second opinion may confirm the original diagnosis, but the second doctor may prescribe a different treatment, such as a clinical trial that may be available only at their institution. This is why Dr. Narewski suggests seeking a second opinion at a facility with a robust research program, like that at the Temple Lung Center where patients have access to cutting-edge therapies, including lung transplant.
It’s a chance to establish a long-term care provider
To aid the diagnosis of any interstitial lung disease, it’s recommended that any findings or test results be reviewed by a multidisciplinary committee made up of many types of lung specialists. This committee works together to make the diagnosis. This sort of arrangement, though, is usually only available at a large academic medical center, like Temple.
According to Dr. Narewski, patients shouldn’t feel guilty or strange about seeking a second opinion. It’s a common practice that your doctor will understand. At the end of the day, all that matters is your health. The surest way to protect it is with an accurate diagnosis and the proper treatment plan.
“Everybody with a fibrotic-lung disease diagnosis deserves to be evaluated at a specialized center, like the Temple Lung Center,” Dr. Narewski says. “We can establish a care relationship that the patient can rely on.”