Getting a Second (or Third) Opinion

If you’ve recently received a diagnosis for PF, it might be helpful to get another professional’s opinion. This is called a “second opinion” – and it’s more common than it seems! Doctors are typically very understanding when a patient wants another professional’s opinion – and they might even be able to refer you to a specialist or a colleague they’d recommend. Read on to learn why, when, and how to see additional doctors or specialists for your PF treatment plan. 

Why would someone get a second opinion? 

1. Research shows that getting referred to a specialist can make a big difference in your diagnosis. In a study by Mayo Clinic, 88% of patients received a new or distinctly different diagnosis when they met with another specialist for a second opinion. In their conclusions, the researchers note that getting a referral is an essential way to receive the right care. 
2. Doctors aren’t perfect. Getting another specialist’s perspective can help catch any mistakes that were made during the diagnostic process, and prevent any future confusions as well. If you end up seeing two doctors who come up with completely different diagnoses or treatment plans, it might even be necessary to get a third opinion! 
3. Diagnosing and treating PF can be difficult and confusing. There are still many unknowns about PF, and each treatment option is associated with its own levels of risk and effectiveness. It’s helpful to connect with all kinds of specialists because they all bring a diverse set of skills, strengths, and knowledge to your healthcare team. 
4. Your health history and current needs are complex and unique. People with PF may have additional conditions, concerns, or diagnoses like pneumonia, scleroderma, or COVID-19 long haul symptoms. You may need a second opinion in order to better understand how your PF diagnosis ties into your other healthcare needs. 

When would someone get a second opinion?

1. When their doctor doesn’t specialize in PF
2. When their diagnosis or reason for diagnosis isn’t clearly understood yet
3. When they’re considering treatments that are risky or extreme 
4. When it’s difficult to decide which treatment plan is best for them
5. When their doctor doesn’t listen to their treatment requests
6. When their doctor isn’t able to or available for answering questions 
7. When they’re measuring their progress but not reaching the goals they’d set
8. When they don’t feel safe with or supported by their doctor
9. When they try describing their symptoms but feel like the doctor doesn’t listen or hear them fully

How would someone get a second opinion? There are several options:

1. Contact your insurance company and ask for a list of providers in-network. Once you receive the list, reach out to the providers and see if they’re taking new patients. 
2. Ask your primary care provider for a referral to a PF specialist (such as a pulmonologist). One way to start the conversation is by saying, “If you had this disease, which specialists would you try to see? Can you refer me to them please?”
3. Reach out to local resources (such as clinics and hospitals) and online communities (such as our community forum and support group) for guidance on the process. 
4. Ask a friend, relative, or caregiver to help you search for specialists in your area. Many people are happy to help. 

Many people with PF may need to self-advocate and ask for a second opinion. Please comment below and let us know whether you’ve experienced this before.