The idea of getting a second opinion after a lung cancer diagnosis may make you feel uncomfortable. But cancer organizations, including the American Society of Clinical Oncology and the Lung Cancer Foundation of America, say second opinions are a must.
Not every cancer doctor in the country is up to date on the latest treatments, and the impact of a an inaccurate assessment can be enormous. One review published in the May 2014 issue of the journal Mayo Clinic Proceedings found that 10 to 62 percent of second opinions for cancer diagnoses led to a major change in the diagnosis, treatment, or prognosis for patients. What’s more, many health insurance companies reimburse for second opinions, and some even require them.
Here are some reasons to get a second opinion:
You Have Doubts About Your Diagnosis. Many patients in the Mayo Clinic Proceedings study were confirming a diagnosis or treatment recommendation or dissatisfied with their initial consultation. “I recommend that patients get a second opinion if they’re thinking about it, because it provides them with some peace of mind,” says Catherine Ann Shu, MD, an oncologist at Columbia University Medical Center in New York City.
You’ll Get a Second Pair of Eyes on Your Pathology Report. Pathology reports, which are basically a scientist’s interpretation of the appearance of the cancer cells, indicate not just that you have cancer, but the type and stage of the cancer, which is critical information when it comes to making treatment choices. Pathologists do sometimes come to different conclusions, so make sure you’re acting on the right information. One study published in the February 2013 issue of Archives of Pathology & Laboratory Medicine found 457 major discrepancies among more than 70,000 pathology reports, almost all of which affected treatment decisions.
You’ll Find Out How to Handle Nodules. Doctors often recommend that people at high risk for lung cancer, like long-time smokers, have a computed tomography (CT) scan to keep an eye out for early changes that might suggest lung cancer. Often these changes take the form of nodules (lumps of tissue). But not all nodules are cancerous, and you’ll need to decide what to do if one turns up (watch and wait, or biopsy, for starters). If your CT scan is positive, you may want a second opinion about how to proceed.
Your Doctor Isn’t a Lung Cancer Specialist. Some oncologists treat several different types of cancers and so may not have as much experience treating lung cancer patients. It goes to reason that the more a doctor treats a specific kind of cancer, the more experience they have. If you were diagnosed by someone who was not a lung cancer specialist, you may want to find a specialist for the second opinion.
You Have Several Treatment Choices. Though the treatment guidelines for common lung cancers are often fairly straightforward, seeing more than one doctor might lead to a different (and better) approach. A second opinion can help you make the best decision after considering all the options.
You Were Told That Surgery Isn’t Possible. Some lung cancers are deemed operable, and some are not. Speaking with a thoracic surgeon (a chest surgeon) who specializes in lung cancer will help ascertain whether it’s possible for sure, says Dr. Shu.
How to Tell Your Doctor
Just do it. You may feel awkward telling your doctor you want a second opinion, especially if you have a strong connection to them. But most physicians involved with cancer care feel that seeking a second opinion is a good idea, says Shu. “I always tell my patients not to feel disloyal,” she says. And don’t be cowed if a doctor acts displeased. “If a doctor tells you that you shouldn’t get a second opinion, it’s always a red flag for me.”
How to Find a Second Opinion
Seek a lung cancer specialist at a large academic center when possible, because specialists at academic centers may be more knowledgeable about new therapies and have access to clinical trials if needed. And don’t discount a specialist if you have to travel to see them – often you can go back to your original doctor for the actual treatment and the specialist will act as a consultant.
“If you can’t go to an academic center, find a lung cancer specialist who has a lot of experience treating the disease,” says Stephen Cassivi, MD, a thoracic surgeon at the Mayo Clinic in Rochester, Minnesota. To find a doctor, you might start by taking a look at this database from the American Society of Clinical Oncology, or at this list of lung cancer centers from the Lung Cancer Alliance.
What to Bring
- Your Medical Records. Include information such as blood tests, biopsy results, and imaging results (CT scans).
- Your Scans/Tissue Samples. It’s very important to bring your scans and tissue specimens, not just the reports. The specialist will want his own pathologists and radiologists to assess the tissue and the scans. The scans are typically stored on a CD, and the specialist will request the tissue directly from your doctor. You will need to give permission for your doctor or pathology lab to release them.
- A Buddy. It can be overwhelming to get a lot of information at once. A family member or friend can take notes while you discuss the treatment approach with the doctor.
Making a Decision
Most doctors consulted for a second opinion will recommend a different approach to treatment from the first. Less commonly, the second doctor may provide a different diagnosis. “I wouldn’t recommend getting third and fourth opinions in general because you need to start treatments as soon as possible and getting opinions takes time,” says Shu. If you are uncertain whose approach to take, she says, you can ask the two doctors to discuss it together.