Reasons You Need a Second Opinion with Lung Cancer

Where to Start, What to Ask, and Other Tips

couple learning why a second opinion for lung cancer is critical
Why is it important to get a second opinion with lung cancer?. National Cancer Institute, Rhoda Baer (photographer)

If you've been diagnosed with lung cancer, getting a second opinion is one of the most important first steps. There are several reasons for this, including the fact that lung cancer treatment is changing rapidly and it's virtually impossible for any one physician to be on top of all the latest treatments. Plus, we've learned that outcomes are better at some cancer centers than others, at least with respect to lung cancer surgery.  Once you decide you would like a second opinion, knowing where to go is as important as arranging one.. And even when you have your appointment made, having a list of questions to ask can help you make sure you get the care you need and deserve.

A second opinion can occur at any time. Ideally, a second opinion is obtained right after diagnosis, and before treatment begins. After a recurrence, it's also important. But people can request a second opinion at any point in their journey, even in the middle of treatment.

Even though you've probably heard people tell you to get a second opinion, and you may have recommended getting a second opinion to loved ones in the past, many people hesitate to make these important appointments.

Why?

There are a few reasons people may be reluctant to ask for a second opinion. One is that people don't want to offend their doctors. They are worried that asking for another doctor's opinion will jeopardize the relationship they have with their doctor. Another is that people don't want to take the time. After all, if a tumor is growing in their body, they want to address it as soon as possible.Thankfully taking the time to get a second opinion rarely interferes with the timely treatment of cancer.

Understanding Second Opinions

A second opinion is a separate opinion from another doctor regarding the care and management of your cancer. Sometimes this is done in person, and sometimes another doctor is simply asked to review your records. In general, a second opinion refers to a consult with a doctor from a different clinic or cancer center rather than another doctor within a group practice.

How Do Lung Cancer Doctor's Feel About Second Opinions?

Not only do cancer doctors not feel offended when their patients request a second opinion, they usually expect it. And when faced with cancer, a large percentage of physicians seek out second opinions themselves.

Choosing a Second Opinion Doctor or Cancer Center

Many people wonder where they should go for a second opinion for lung cancer. This can vary depending on many things, but here are a few thoughts to get you started.

Ask your Oncologist

From reading the literature and attending medical meetings, the oncologist you are initially seeing may be aware of an oncologist elsewhere who has particular expertise or interest in your type of tumor. For example, if your tumor has an ALK mutation, there are some oncologists that focus much of their time on this specific target.

Consider a Second Opinion at a Large Cancer Center

Some of the larger cancer centers, for example, Sloan-Kettering Cancer Center, MD Anderson Cancer Center, Dana Farber, and the Mayo Clinic among others, may offer not only more clinical trials but access to physicians that are more specialized. For example, rather than a general medical oncologist who may see people with all types of cancer, a larger medical center may offer access to physicians who specialize in lung cancer alone. There are plenty of community oncologists who provide excellent care, but when pursuing a second opinion, a larger center may give more options. It's important to note that this does not necessarily mean that you would need to travel for treatment. A specialist at a large cancer center may simply make recommendations for treatment that you can receive at your home clinic.

Consider the Location of Clinical Trials

Of course, learning about clinical trials that may pertain to you can seem like a daunting task. But with lung cancer, there is help available for anyone who asks. Several of the lung cancer organizations have worked together in forming a lung cancer clinical trial matching service. Via this free service, patients are referred to nurse navigators who can match your particular type of cancer and personal information with clinical trials available in the United States and around the world.

Before making your appointment, check out these thoughts on how to choose a lung cancer treatment center.

7 Reasons to Get a Second Opinion With Lung Cancer

Even upon hearing that most lung cancer doctors (oncologists, thoracic surgeons, radiation oncologists etc.) do not begrudge their patients second opinions, many people still carry a fear that to do so will alter their relationship with their doctors. Will their doctors treat them differently because they sought out a second opinion? Doctors are human, are you sure they won't feel threatened? If any of these thoughts have hindered you, make sure to think about the following points.  

No Doctor Can Know Everything

No physician can be on top of the daily findings of every single study and clinical trial at every university around the world looking at lung cancer. Doctors are human.  

Your Life Could Depend on it

Even with "evidence-based" guidelines becoming the norm in oncology, there are still people who fall through the cracks. An example to illustrate this is a fairly new guideline to do molecular profiling (genetic testing) on the tumors of anyone with advanced non-small cell lung cancer, particularly lung adenocarcinoma. For people who test positive for a few of these mutations and genetic abnormalities (EGFR and ALK and ROS1) medications are available that may improve survival. Despite this, genetic testing is underutilized in the United States.

Surgical Outcomes from Lung Cancer Surgery Vary

Studies suggest that people who have lung cancer surgery at cancer centers that perform a high volume of these surgeries have better outcomes. In addition, some surgical procedures, such as the less invasive video-assisted thoracoscopic surgery (VATS procedures), may not be available at all cancer centers.

Progress is Being Made in Lung Cancer Treatment

After years of little change in the progress of lung cancer treatment, breakthroughs are being made. We now know that every lung cancer is different and have treatments that target some of these differences. Not only are some of these newer treatments more effective than chemotherapy at extending life, but often have fewer side effects as well.

Comfort and Confidence

Even if the second opinion doctor provides the same treatment recommendations, you may feel more comfortable and confident with the treatment you receive. You may also be less likely to second guess yourself down the line if things don't go as you would like.

To Confirm or Refute Your Diagnosis

To lower the risk of misdiagnosis. Statistics suggest that one in eight cancer patients are misdiagnosed. It's not just treatment options you want to discuss with a second opinion doctor, but your diagnosis itself.

Personality Matters

Not every doctor meshes with every patient. This doesn't mean some doctors are good and some bad, or that some patients are easy to get along with and others not, just that some people connect with certain people better than others.  

Questions to Ask Your Second Opinion Doctor

There are some questions you may wish to ask your second opinion doctor below. You may wish to copy this list, and then add your own questions as they come to mind. In addition, you may want to ask your loved ones if they have any other questions to ask.

1. What treatment do you recommend and why? What are the possible side effects of the treatment?

2. For what reason do you recommend either the treatment my first doctor recommended, or a different treatment?

3. What clinical trials do you have available for my condition? Is there a clinical trial only available elsewhere that you think would be a good fit for me?

4. If the treatment is different, can you get the "second opinion treatment" close to home? If not, how often will you need to travel? If you will need to travel to take part in a clinical trial, will the study cover some expenses such as airfare and hotel? If not, are there any reduced cost housing options available?

5. What is Plan B? For example, if the treatment the doctor recommends doesn't work, what would be the next option? You may also want to ask about a Plan C and Plan D. Some people find it helpful knowing what other options exist down the line, especially as they cope with scanxiety (the anxiety that occurs when waiting for results of follow-up scans).

6. If I receive care at this facility, who will manage my care team?  Who do I call if I experience problems? What other doctors and therapists will be involved in my care?

7. What "integrative therapies" are available to help with the symptoms of treatment?

8. Finally, do you agree with the diagnosis I have been given?

Other Tips When Getting a Second Opinion

There are a few other tips that may help ensure that you are prepared for you second opinion.

A Second Opinion Does Not Mean Starting Over

When you get a second opinion it does not mean that you are back at square one or that you will need to repeat endless tests. That said, many doctors will want their own specialists to review radiology scans you have had elsewhere or pathology results that were done elsewhere. There is some cost to this, but certainly less than repeating the tests. You can think of it as having several second opinions—second opinions on your scans and pathology results as well as your diagnosis and the treatment recommended.

Gather Copies of Everything

Having copies of all of your records is a good idea whether or not you are seeking a second opinion. Many people find it helpful to keep a folder with clinic notes, radiology tests, lab results, and pathology results, and if you have this, is will be easier to gather what you need to bring to your appointment. In some cases, tests such as radiology scans can be transferred electronically, but more often you will need to bring a CD of the scan with you. Most second opinion doctors will want to see the actual scans you have had done and not just a report typed by a radiologist. Check out these tips on how to get your medical test results. (Some lung cancer survivors ask the radiology staff to "burn" a copy of their scan to take home on the day the scan is done).

Prepare a List of Questions

Before your appointment, it's helpful to write down all of the questions you hope to have answered. Having these in writing, and referring back to your list during your appointment, will help ensure that they are answered. It can be very helpful to bring a family member or friend with you as well to take notes and ask questions you may have forgotten.

Insurance Payment for Second Opinions

Most insurance carriers cover second opinions, though you need to check with your insurance company. Some carriers even require a second opinion before beginning treatment.

Transferring Care

If you choose to transfer your care to your second opinion doctor, check out these tips on how to make a smooth transition when changing doctors.

Be Your Own Advocate

Whether you choose to stay with your original doctor or transfer your care to a second opinion doctor, being an active part of your healthcare team is your best insurance policy. Check out these tips on how to be your own advocate in your cancer care. And if you've just been diagnosed with lung cancer, consider these first steps to take when newly diagnosed with lung cancer.

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