Fixing a Bad Diagnosis

Last revised” 08/06/2023

By W. Kolber

It may be hard to accept, but sometimes doctors just get the diagnosis wrong. It happens more often than you might think.

According to a 2015 Wall Street Journal article by Sumathi Reddy, a recent study of more than 6,700 second opinions found that the original diagnosis was changed 14.8% of the time, and changes in treatment were recommended in 37.3% of the time. That should make you think about any recent diagnosis that seems off or wasn’t followed by successful treatment. You know you. You live with you your entire life. It’s important that you listen to what your body tells you.

Here’s an example excerpted from an article authored by Kristine Crane, and published in US News and World Report, July 23, 2014.

     Trisha Torrey, had a golf-ball-sized growth in her abdomen misdiagnosed as a rare and fatal tumor. Her surgeon removed the growth and wanted to start chemotherapy immediately. Trisha didn’t sleep for weeks as she researched her condition. Meanwhile, Trisha’s test results, including a blood work and CT scans, showed no sign of any cancer. Trisha asked the doctor for a second opinion. However, her doctor said that her condition was so rare that no one would know more than him. This is what finally set Trisha off to start advocating for herself.

     She asked for her medical records and found missing test results. A friend helped her to find another doctor. The new doctor sent Trisha’s test results to the National Institutes of Health (NIH). Their diagnosis was that Trisha did not have cancer at all. She had an inflammation of her fat cells. While this mistake cost Trisha a great deal of her savings, it saved her the cost, pain, and emotional stress of undergoing unnecessary chemotherapy.      

When you’re unsure of your diagnosis…

  • Step 1: Investigate further.
  • Step 2: Request copies, digital or print, of your medical records when you check in for every appointment or procedure.
  • Step 3: Contact your health insurance provider to discuss your needs for a second opinion.

     You should get a second opinion in all cases when you are diagnosed with a major illness or condition. The most common areas for second opinions are cancer, neurology, cardiology, and orthopedics. Many times your insurance provider will require a second opinion before approving reimbursement for an expensive treatment.

Since doctors are viewed by most people as trusting, caring and honest, it is easy for any patient to feel like their doctor will be offended if they seek the opinion of another doctor. Do not let this feeling prevent you from getting a second opinion. Good doctors are comfortable with their patients seeking the opinion of another doctor and often encourage it. Just because a doctor is nice or has a good bedside manner doesn’t make that doctor a good clinician. If your doctor is nice it’s an extra added bonus. Don’t assume that the doctor who gives you better news is the correct one, either. Just because you like the answers the doctor gives you, does not mean that doctor is right, and don’t assume the doctor who gives you a second opinion is correct either.

Times when you should consider getting a second opinion include when:

  • You have been diagnosed with a rare or life-threatening condition.
  • More than one treatment option has been recommended.
  • Your diagnosis has not been confirmed, or it is unclear.
  • You have multiple medical conditions.
  • The recommended treatment option is risky, controversial, or costly.
  • You are interested in treatment options with which your doctor is unfamiliar.
  • You are considering a clinical trial or experimental treatment.
  • You are considering no treatment at all.
  • You are not responding well to your current treatment.
  • You have lost confidence in your medical care provider.
  • You are uncomfortable with the advice you have been given.
  • Your health plan requires a second opinion.

       Once your original diagnosis is confirmed by a second doctor who specializes in your illness, the likelihood that the diagnosis is accurate is much higher. If the diagnosis from a second doctor is different than the first, talk to your health insurance provider and primary doctor about getting about getting a third opinion. You may also feel that you want the opinion of an expert at treating your specific condition to ensure that you are well educated about your choices for treatment and care.

Forget about bedside manner or if the doctor is nice. Find a doctor with a lot of recent experience successfully treating your condition, and one who will communicate with you in a way that feels comfortable.

Talking with your doctor

If you don’t know how to talk to your primary doctor about getting second and third opinions, here are a few suggestions:

  1. “I’m sure you understand that this is a complicated and important issue for me, and I think I would like to talk to another physician about my diagnosis as well. Perhaps you have a recommendation?” This approach should help you maintain your relationship with your original doctor, and start the process for getting another opinion. If your doctor is not supportive, that is a warning sign telling you to get another opinion.
  2. “I am not sure what I need to do at this point, and I think I need another opinion.”

     It is possible that your doctor will refer you to a friend or colleague for a second opinion. In that case do the following:

  • Thank your doctor.
  • Ask why the doctor they are referring is a good choice.
  • Get the second doctor’s name and contact information.
  • Let your first doctor know that you are planning to speak with a few doctors, and that you would be happy to let him/her know the doctor you end up scheduling an appointment with.

Before your second opinion appointment

Usually it’s better to get a second opinion from a doctor with absolutely no relationship to your first doctor. Do not schedule an appointment with any doctor until you have taken the following steps:

  • Contact your insurance provider. Tell them about your diagnosis. Then find out what costs they will cover and what costs you will be responsible for.
  • Research your options for doctors who are in your network. You can get a list from your insurance provider.
  • Research each of the doctors on your list, and find out how long they have been in practice, whether they are Board Certified, if they have any marks against their license, or if they have any malpractice losses. In most cases, you can find that information from the professional association that covers the specialty for your condition, the State Medical Board in your state, or online doctor rating sites.
  • If you find things that concern you take that doctor off your list and add another.
  • Make a list of three doctors who are in your network, have a lot of experience treating your condition, and if possible are convenient to your home or place of work.
  • If you want to find subjective information about possible doctors for a second opinion, talk to other patients, connect to patient chat rooms, and ask your family, friends or colleagues if they know of anyone who had been diagnosed with similar type of medical problem as the one you are facing. Ask your contact if they would ask the person they know if they would recommend their doctor. You might also ask other healthcare workers who are not doctors, like nurses, for their opinions.

     Once you have found two or three experienced doctors that you like, make sure that they are in your insurance network. Assuming that they are in your network, call them and ask if they are accepting new patients. If they are, let them know your circumstances and ask if the doctor would have a few minutes time to talk to you about becoming a patient. If the doctor has the time schedule an appointment and prepare for the visit.   

     Some specialists will only schedule new patients if they are referrals from their colleagues. If this happens to you contact your first doctor’s office. Provide them with the contact information for your second doctor and ask them to make an appointment for you, or provide a referral. If they tell you it is not a doctor they usually deal with ask them to make the appointment anyway. If you choose a doctor for your second opinion who does not accept your insurance you may have to decide whether you can afford to pay for the appointment yourself, or whether you’ll need to identify another doctor who will work with your insurance.

Preparing for the second opinion appointment

Take the following steps to prepare for your visit to get a second opinion:

  • Contact your first doctor’s office and request that copies of your medical records be sent to both your second doctor, and to you.
  • After you have made arrangements to have your records sent to the second doctor, contact the second doctor’s office and find out what else the doctor might need in order to provide a second opinion. Examples would be your insurance information, your medical records from past doctors, and anything else. Make sure that your records are delivered, faxed, or emailed before your appointment. That gives your second opinion doctor a chance to review them before your appointment.
  • Prepare a list of questions to ask during your appointment. The questions in the list below should serve as a good starting point.

Suggested questions for a second opinion appointment:

  • Does the doctor have all of the information needed to make a diagnosis?
  • Is there any chance the medical problem could have a different diagnosis than was originally made?
  • Are there any alternative forms of treatment available?
  • What are the likely results if you wait to have any treatment?
  • What are the risks associated with the treatment(s)?
  • Are there any side effects or residual effects from each treatment option?
  • How is the treatment plan expected to improve your health or quality of life?
  • How long is the recovery period?
  • If the second opinion differs from the initial one, why? (It is important to understand the reasoning behind a medical opinion.)
  • Who can I call if I have any questions after reading your report, or considering your diagnosis?

     The second opinion appointment is likely to be a stressful time. Recognize it, and plan for it. Your second opinion doctor may begin by reviewing previous medical records, test results and doctors notes with you, and s/he will examine you at some point. Based on their review and exam, they may or may not recommend additional tests. If no additional tests are required you can expect your second doctor to give you an opinion and discuss your options with you. If the doctor recommends additional tests that you agree to have, you will likely have to make another appointment to get an opinion after they receive the results.

     This is also the time to ask the questions you prepared. It is not a bad idea to have a relative or friend come with you for support and to take notes. If that’s not possible you may want to bring a tape recorder to keep track of what the doctor says and recommends. Before leaving verify that the doctor will provide you and your current doctor with a written report and any test results, and that they will be available to you for follow up questions. 

Choosing your doctor and treatment

     Once you have a second opinion, compare it to the first opinion. If both of your doctors agree on your diagnosis and treatment recommendations you can proceed with a high level of confidence.  If your second doctor’s diagnosis agrees with your first doctor, but a different treatment plan is recommended, you need to ask your doctor(s) how long you have to decide on a treatment plan. Discuss both treatment plans with both doctors. Do some additional research on your own. Discuss both treatment options with your insurance provider. Consider a getting a third opinion specifically regarding your treatment options. Ask what would happen if you chose not to get treatment for a while.

     If the doctors disagree on the diagnosis consider getting a third opinion from another specialist. The third opinion will likely be similar to either your first or second doctor. That should help you decide about the best treatment option for you. If the doctor recommends a clinical trial as treatment or a device, ask whether he or she has a financial relationship with the company that sponsors the trial or makes the device.

Online Second Opinions

     When you get a second opinion, it is preferable to be seen by a doctor. That doctor will perform a physical examination and perhaps other tests. The doctor will also thoroughly review your medical records, ask you questions, and address your concerns. Do not rely on the Internet or a telephone conversation. Insurance may or may not pay for online consulting services. So, make sure you understand the costs up front.

Several leading U.S. healthcare providers offer online, virtual, or remote second opinions. At the time of publication of this article, the MyConsult online second opinion service by the Cleveland Clinic cost $565 for an online opinion. If a pathologist is needed the cost was $745. They have provided tens of thousands of second opinions. Contact them at (216) 444-3223. In case you were wondering, they agree with the original diagnosis about 75% of the time. That means the 25% of the cases they do not agree with the original diagnosis.

     Partners Healthcare is another source of second opinions from leading healthcare institutions. This is a collaborative effort of Massachusetts General Hospital, Brigham & Women’s Hospital, Harvard Medical School, and Dana-Farber, Partners Cancer Center. They can be contacted at (617) 724-9295.

     Johns Hopkins Medicine also offers remote second opinions for Dermatology, Gastroenterology and Hepatology, Neurology and Neurosurgery, Neuroradiology, Otolaryngology, Pathology, Surgery, and Urology. They can be contacted at 410-464-6555.

     Once you have a second opinion that confirms your diagnosis, or a third opinion if needed, you can confidently begin to learn about your options for treatment.

What Do Second Opinions Cost?

     Most medically necessary second opinions will be covered at least in part by insurance. If you are paying out-of-pocket, second opinions can cost $500 to $5,000 for complex cases. Also, beware that tests and lab work required for a second opinion may not be covered by your insurance provider if they were not included in your initial diagnosis. So, call your insurance company before you seek a second opinion to find out what expenses are covered, and what expenses are your responsibility.

     Medicare for example, covers 80% of the cost. If the second opinion does not agree with the first, Medicare will pay 80% of the cost of a third opinion. If you are in a HMO, your plan may require your primary care physician to approve your second opinion. If you are a Medicare recipient you can get more information about second opinions by calling 1-800-633-4227.

Tip: If your health plan does not specifically mention whether it covers second opinions you and your doctor may need to partner to advocate for coverage. Specially, if you want to see an expert who is not a part of your provider’s network.

     You should always let your doctor(s) know that you want a second opinion. You will need your records transferred to the new physician. You may also want the doctors to discuss your situation openly so you can learn where there is agreement and disagreement. Statistics show that one third of adults in the U.S. will not seek a second opinion, and that 10% of newly diagnosed patients do not understand their diagnosis. Getting ensures that you have all of the facts and are fully informed of your diagnosis, prognosis, and treatment options.

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