In most medical situations, and especially when frontotemporal degeneration (FTD) may be involved, a second opinion can make a difference in knowledge and treatment.
Your doctor may be a leading specialist or someone you’ve trusted for years. S/he may be smart, compassionate, and thoughtful. But don’t let that prevent you from seeking a second opinion.
Know that second opinions are commonplace, and most doctors welcome other doctors' opinions. Just because you get a second opinion does not mean that you have to change doctors.
The top two reasons to obtain a second opinion about any medical condition are:
- You need more information about your options
- You are unsure about a diagnosis
Another reason to get a second opinion is if you are diagnosed with a rare disease. Some diseases are so rare that research, and thus data and treatment options, are limited. In addition, not all healthcare providers may be familiar with them.
Some diseases are difficult to accurately diagnose while the person is living. FTD is often misdiagnosed as Alzheimer’s disease, depression, Parkinson’s disease, or mental illness. The wrong diagnosis could mean incorrect treatments, possibly worsening symptoms.
Likewise, being diagnosed with a neurodegenerative disease like FTD can be frustrating and frightening. But you are not alone. An estimated 60,000 people in the United States are living with this disease, and thousands more are caring for those affected. Look for doctors and specialists who have treated FTD and seek their opinion. You want to be sure you are getting the best care possible.
The value of a second opinion
Medical science is fast-moving, and physicians’ training and experience with conditions and treatments vary. At the same time, medicine is not an exact science. Tests can be inconclusive. There can be different approaches that are both effective or not. A physician combines knowledge about medicine and about the individual affected to guide treatment decisions.
Second opinions can answer questions such as:
- Is there someone with special expertise in my condition who might have something to add?
- Are there other options for treating this problem? What are the pluses and minuses of each? Which one is best for me?
- Do other doctors agree with the diagnosis and treatment plan?
- If test results aren’t clear, should they be repeated or are there other ways to find out?
Most health insurers cover second opinions for medically necessary procedures. Some even require you to get a second opinion. In complicated cases they will pay for a third opinion. It’s important to check with your insurer to determine the policy for second opinions.
Doctors with Yale Medicine recommend obtaining a second opinion, especially in these situations:
- When the diagnosis or treatment is unclear
- When surgery is recommended
- When the diagnosis is cancer
- When the patient is your child
- When you are diagnosed with any serious or life-threatening disease
- When the treatment is very risky or toxic
- When the diagnosis is not clear
- When the treatment is experimental
- When there is no established consensus or Food and Drug Administration-approved treatment
- If you're considering participating in a trial for a new drug
- If you're considering some new experimental approach or a procedure that involves using experimental instruments or devices.
- When you want peace of mind
When you receive a medical diagnosis, you may be confused and fearful. Second opinions can not only reinforce a correct diagnosis, but can help determine the best course of action. An opinion from a different healthcare provider may assist in making informed decisions. However, sometimes even with a second opinion, there are no firm answers to questions.
How to get a second opinion
When asking about second opinions with your physician, be polite and civil. Most physicians should welcome and endorse it.
You can ask your doctor for the name of another expert, someone with whom he or she is not closely connected. Explain that this is how you like to make big medical decisions. Don't worry about offending your doctor. Second opinions are expected.
If you aren't comfortable asking your doctor for a name, check with your insurance company, a local medical society, or the nearest university hospital. Consider getting an opinion from a health professional with a different background.
The following steps will help make a second opinion go smoothly:
- Ask your health insurance company if it covers a second opinion. In some cases, like many surgeries, it is required.
- Schedule a visit with the second doctor. Give yourself enough time to arrange for your medical records to arrive there before your appointment.
- Have your first-opinion records sent ahead to the second doctor.
- Meet with the second doctor
- Have the second doctor's office send a report to your primary doctor, the one who manages all your care. This keeps all of your medical information in one place.
A Doctor’s perspective on second opinions
Jerome Groopman, M.D., author of Second Opinions: Stories of Intuition and Choice in the Changing World of Medicine, offered advice on obtaining second opinions in a WebMD interview. Here are some excerpts:
Should you always tell your doctor if you're seeking a second opinion?
Dr. Groopman: Absolutely. One, you need all the medical records and any pathology slides or other test results to give to whoever is giving the second opinion. Two, you want the experts to discuss in an open way what the areas of agreement and disagreement are. If you don't tell your doctor because you're afraid you're going to insult him, it's hard to get the records together and communicate.
Should you ask your doctor to recommend someone for a second opinion?
Dr. Groopman: You can, but it's important to see someone at a different institution. Institutional cultures are real, and often an opinion leader at one hospital will do things a certain way and others at that institution will conform to that viewpoint. But at another hospital, even across town, there may be a very different philosophy.
What if your health plan doesn't say anything about how it covers second opinions?
Dr. Groopman: This is one of the major flashpoints for a patients' bill of rights and the whole issue of managed care. Each plan differs as to the level of choice and freedom you might have to see someone inside and outside the network. If you're restricted, or in a situation where the diagnosis is not clear, or you feel the best treatment exists at another institution, then you need to advocate for yourself quite loudly.
Is it realistic to ask for a second medical and lab or pathologist's opinion?
Dr. Groopman: Always. Absolutely. I saw a woman who had sought three "second" opinions. She had been diagnosed with a breast cancer that was characterized by the genetic marker HER2. If staining of the tissue by a pathologist shows this, it means that you're eligible to be treated with a new medication. It also means you have a much more aggressive form of cancer and need chemotherapy immediately. As part of my assessment, I sent the slides to our pathologist, and he said, "I just don't think this is HER2. I think there may have been a technical error in the staining." We repeated the lab test and it was negative.
Second opinions are empowering
You are not being difficult nor are you in denial about your situation when you seek a second opinion. According to VeryWellAHealth, seeking a second opinion is being smart and empowered. It is wise to take an active part in your health care, and getting a second opinion is a part of that process. In addition, most doctors expect and encourage second opinions. So, be upfront with your physician about your desire to gather more information. If your physician doesn’t support you or gives you a difficult time, it might be time for a new doctor.