Seeking a Second Opinion Before Brain Surgery: What to Know

Receiving a brain tumor diagnosis can be overwhelming and intimidating. The gravity of the situation and the complexity of treatment decisions can leave you feeling lost and uncertain. In such challenging circumstances, making well-informed decisions becomes paramount. One vital step to consider is seeking a second opinion before brain surgery when possible. 

“My second opinion confirmed my initial assessment and provided additional findings of my diagnosis,” said Stephen C., who has glioblastoma. “I was very impressed with the doctor during my second opinion. He was very experienced, knowledgeable, and thorough. A second opinion is a must when faced with such a daunting diagnosis.”

A second opinion allows another neurosurgeon to review your medical records and offer their interpretation of your diagnosis and treatment plan, including surgery. 

“Having just been diagnosed, I didn’t think to do my own research,” said Gabe R., who was misdiagnosed for 18 months before getting a second opinion. “Looking back, I think the first thing I would do is get a second opinion right away and confirm what the first doctor is saying. If there’s any distinction between the two, do some additional research. Find doctors who specialize in the type of tumor that you have. Find doctors who are trained in multiple tumors but also multiple technologies. I didn’t realize how many different types of surgeries there are and the different treatments.”

In partnership with AANS/CNS Section on Tumors, NBTS has gathered resources about looking for a potential neurosurgeon, the value of obtaining a second opinion before brain surgery when it’s safe to do so, and how a second opinion can impact your brain tumor experience.

What to Look for in a Neurosurgeon

Did you know that many neurosurgeons specialize in specific surgical interventions? For example, some neurosurgeons focus specifically on patients with seizures or epilepsy. Other neurosurgeons may treat patients with Parkinson’s and other movement disorders. 

Neurosurgeons like Edjah Nduom, MD, chair of the National Brain Tumor Society board of directors, specialize in the treatment of brain tumors. Even within the treatment of brain tumors, neurosurgeons may specialize in treating malignant tumors, while others may focus on pituitary tumors. There are even neurosurgeons who are board-certified in a pediatric subspecialty. 

“When you focus on something, you see it all the time, and you spend all of your time talking to other neurosurgeons and physicians that focus on that disease,” said Dr. Nduom. “You spend time reading the research about the best treatments for that disease. You have connections to other specialists that are working on it. In that way, you’re able to provide better comprehensive care than you could possibly do if you’re not focusing on a given tumor or disease.”

For example, a neurosurgeon specializing in gliomas or pituitary tumors has in-depth knowledge, training, and experience with that specific condition. They are more likely to be familiar with the nuances, variations, challenges, and cutting-edge surgical techniques associated with that particular tumor type. This expertise allows them to tailor their approach to your unique situation.

“The care is simply better by specialists,” Dr. Nduom shared. “We have data to support that –  there have been many, many studies that show that patients that are treated at high volume centers, particularly for rare diseases, do much better.^{1 2 3 4} It is really important, whenever possible, at the time to try and find out if the neurosurgeon that you’re speaking to is someone who specializes in the treatment of the condition that you’re faced with.”

Keep in mind that you can travel for surgery and then undergo treatment closer to home. Having surgery at a particular hospital does not mean you must also have your post-surgery treatment done there.

“Getting a second opinion really matters,” said Melanie F., who has had two awake craniotomies. “It’s so easy to say, ‘Oh, there’s a hospital five miles from me, I’ll just go there.’ But you have to look for the leaders. Do your research. Seek out the hospitals that have the latest technology. Not all hospitals are equipped the same.”

Questions to Ask Your Potential Neurosurgeon

Consider asking any potential neurosurgeon the following questions to help you make an informed decision and feel confident in the hands of your medical team. 

• Do you specialize in brain tumors? 
• From what you can determine about my tumor type through imaging…
  • Do you treat my tumor type and its location frequently? 
  • How many surgeries do you perform for this tumor type and its location?
• What sort of training did you get to specialize in tumors like this?
• What types of individuals comprise your treatment team? 
• What other specialists will be a part of my surgical team (e.g., anesthesiologist, surgical technician, resident, fellow, primary surgeon, or secondary surgeon)?
• Does your institution have a regular tumor board?
• Will my case be presented at that tumor board?
• Do you have clinical trials open for this type of tumor?
• What surgical approach will be used to collect tissue that will be vital in diagnosis and potential future precision medicine treatment?

“This may seem like a lot for a patient or a family member to be asking a neurosurgeon all these questions about their expertise,” Dr. Nduom said. “But I can tell you that any true specialist that’s worth their salt, hearing these questions, has no problem with them because they have ready answers to those questions. They are actually maybe a little bit heartened by the fact that this is a patient that’s discerning and wants to deal with the specialist because they know they have that expertise.”

A neurosurgeon who specializes in brain tumors, operates on your tumor type frequently, and has a team of specialists, including a tumor board, to confer with on your case will likely be able to offer you a more nuanced surgery approach. That being said, it’s important to also consider your personal circumstances, goals, and values when selecting a neurosurgeon. For example, your current situation may prevent you from traveling, or a more specialized neurosurgeon may be out of network with your insurance. Your comfort level may differ from other patients with brain tumors, and it’s up to you to decide what you’re comfortable with.

In addition to the questions listed above that will help you uncover how qualified the neurosurgeon is for your particular case, you may also want to ask key questions about the surgery itself. 

When to Seek a Second Opinion Before Brain Surgery

Many patients and their families don’t know they can ask for a second opinion before brain surgery or worry that they don’t have time to get a second opinion and seek a specialist. Dr. Nduom shares that patients may have more time than they think.

“What many patients or families won’t know — it’s hard to get this information out to people ahead of time — is that there actually tends to be a lot of time to think about the next steps when there is an imaging diagnosis of a possible brain tumor,” said Dr. Nduom. “It is actually very, very rare that someone shows up, even in the emergency room department, with symptoms of a brain tumor and actually needs a capital ‘E’ emergent surgery, or surgery that needs to be done within the next 24 hours.”

For example, a true emergency may be due to rapid patient decline, associated hemorrhage, or active herniation due to pressure in the skull.

“For the vast majority of patients who have an imaging diagnosis of a brain tumor, surgery within the next week to two weeks would be perfectly safe for them,” Dr. Nduom explained. “Their symptoms can be controlled with medications. We can watch them either inside the hospital or outside, and they can seek a second opinion before they’re moved to the operating room. For that reason, I think it’s really important that patients and their families know that they have the time, that they can take a pause, and they can start asking their surgeon a few questions.”

How a Second Opinion Can Help You

A second opinion before brain surgery can make you feel more comfortable and confident that you’re finding the right team for you, your circumstances, and your needs. Brain tumors come in various types and grades, and seeking a second opinion ensures you have a solid and accurate understanding of your condition.

“A second opinion confirmed that I needed the tumor out, as it would continue to grow into my brainstem,” said Terry D., who underwent surgery for tentorial meningioma. “It didn’t alter my next steps, but it made me more comfortable. I think when you are given news like this, you are in shock, and you need to process it.” 

Different doctors may have different treatment approaches. A second opinion can introduce you to the latest treatment options at other medical centers, potentially offering less invasive or more effective solutions. It gives you a choice and allows you to make decisions that align with your goals and values.

“Do not rush into any decision because these decisions are relatively permanent,” said Julia V., who had two surgeries for grade 3 anaplastic astrocytoma. “Take your time and talk to as many people as you can. Don’t be afraid to go outside your hospital or contact other patients and see what they’re doing. I think at first, we felt like, ‘Oh, we got our diagnosis here, so we have to do surgery here and see what they have here.’”

If your second opinion confirms the diagnosis and treatment plan, you can determine which doctor and health system best fits you.

“Everyone agreed on the diagnosis due to the hallmark characteristics easily visible on the series of scans,” said Elizabeth Y., who underwent surgery for central neurocytoma. “My [additional] opinions were more focused on gathering consensus on the best approach for surgery and any post-surgical adjunctive care like radiation. My search allowed me to find the surgeon I had the most confidence in, which — despite having been a costly endeavor — was priceless! It gave me a sense of agency over a process that is otherwise entirely overwhelming and awful.”

Where to Find a Second Opinion Before Brain Surgery

Knowing where to look for a second opinion after a brain tumor diagnosis can seem daunting. NBTS’s Personalized Support and Navigation team can provide patients and care partners with options for where to look for a second opinion.

“We get a lot of people who reach out, and they may be hesitant to get a second opinion because they feel a sense of loyalty to their care team,” said NBTS’s Patient Navigator Katherine Pahler, RN. “We try to share with them that this isn’t you being disloyal to your care team. Rather, it’s you becoming even more informed on a diagnosis that you’re looking for a treatment. If we can get them a neurosurgeon by name or a team, they can feel empowered to reach out instead of just throwing a dart at a map.”

Second Opinion Options

• Ask your initial doctor for a referral. You can say something like, “Before having surgery and starting treatment, I’d like to get another opinion. Who would you recommend for a second opinion, and will you help me?” A patient’s provider is usually accommodating in being a part of the process of getting another opinion.
• If you already have an established relationship with a neuro-oncologist, ask them for a referral. Your neuro-oncologist likely has experience working with various neurosurgeons and can make a recommendation based on your tumor type and personal circumstances.
• Search for a neurosurgeon in your area. The American Association of Neurological Surgeons (AANS) offers a searchable database where you can find neurosurgeons by location and their self-declared primary subspecialty (e.g., neuro-oncology, pituitary, or pediatric). 
• Look for an NCI-Designated Cancer Center near you. According to the National Cancer Institute (NCI), these centers “meet rigorous standards for transdisciplinary, state-of-the-art research focused on developing new and better approaches to preventing, diagnosing, and treating cancer.”
• Request a second opinion virtually. Many neurosurgeon offices offer the ability to request a remote second opinion, which allows the patient’s medical records, including imaging, to be submitted to their office for review without the patient needing to travel for an in-person appointment. 
• Inquire about getting a second opinion from the NCI Center for Cancer Research’s Neuro-Oncology Branch (NOB). The NOB offers physician-to-physician consultations as the first step, so they can collaborate closely with a person’s local or current care team to decide on the best care and treatment options for them, which may or may not include visiting their Neuro-Oncology Clinic at NIH for treatment. Patients at this particular clinic at NIH consent to participate in research studies and are treated without charge.
• Contact your health insurance company for in-network neurosurgeons. Not only can you confirm what kind of second opinion coverage you have through your insurance company, but they can also identify neurosurgeons who are in-network for you.

If you choose a specialized brain tumor neurosurgeon who is outside your insurance network, you can work with their office to advocate for single-patient use authorization. Follow these steps:

1. Contact your insurance company to inform them about your intention to see an out-of-network neurosurgeon. Your health insurance company will provide specific guidance on the paperwork required for the approval process.
2. Gather documentation, including medical records, test results, a letter from the out-of-network neurosurgeon, and any other supporting paperwork explaining why you seek this authorization. 
3. Submit documentation to the insurance company and stay in touch as additional information may be requested.

Materials Needed for a Second Opinion Before Brain Surgery

Whether your second opinion is done in person or remotely, the team will need specific materials to provide an informed second opinion. Before your appointment, collect these items in one central place and be prepared to submit them electronically for virtual second opinions.

• All relevant medical records, including a list of medications
• A comprehensive personal medical history, including any pre-existing conditions or previous surgeries
• All available medical imaging (MRI and CT scans) related to the brain tumor 
• All available radiology reports related to the brain tumor
• A list of questions that will help guide your next steps (some health teams, particularly those offering virtual second opinions, may limit you to a pre-determined number of questions)

Make Your Decision

If you do receive a second opinion before brain surgery, evaluate the following aspects when weighing your options:

• The experience of the neurosurgeon and their team
• Pros and cons, including considerations about travel and costs
• Other quality-of-life factors, long-term goals, and personal values

Seeking a second opinion before brain surgery is not a sign of distrust but rather a demonstration of your commitment to making the best decisions for your health. It can provide clarity and help you navigate your brain tumor experience more confidently. 

“You owe it to yourself to be fully informed so that you can be the best advocate for yourself in making your medical decisions,” said Cindi K., who received a second opinion before undergoing surgery for grade 3 anaplastic astrocytoma. 

National Brain Tumor Society does not endorse any treatments, procedures, or physicians referenced in this blog post. The information in this blog post is provided for educational purposes only and is not intended to serve as medical advice. Anyone seeking specific neurosurgical advice or assistance should consult their neurosurgeon or locate one in your area through the American Association of Neurological Surgeons’ “Find a Board-certified Neurosurgeon” online tool.  

References

[1] Wolfson JA, Sun CL, Wyatt LP, Hurria A, Bhatia S. Impact of care at comprehensive cancer centers on outcome: Results from a population-based study. Cancer. 2015 Nov 1;121(21):3885-93. doi: 10.1002/cncr.29576. Epub 2015 Jul 28. PMID: 26218755; PMCID: PMC4892698.

[2] Aulakh, S., DeDeo, M. R., Free, J., Rosenfeld, S. S., Quinones-Hinojosa, A., Paulus, A., Manna, A., Manochakian, R., Chanan-Khan, A. A., & Ailawadhi, S. (2019). Survival trends in glioblastoma and association with treating facility volume. Journal of Clinical Neuroscience, 68, 271-274. https://doi.org/10.1016/j.jocn.2019.04.028

[3] Johnson, K.J., Wang, X., Barnes, J.M. et al. Residential distance from the reporting hospital and survival among adolescents, and young adults diagnosed with CNS tumors. J Neurooncol 155, 353–361 (2021). https://doi.org/10.1007/s11060-021-03885-6

[4] Onega T, Duell EJ, Shi X, Demidenko E, Gottlieb D, Goodman DC. Influence of NCI cancer center attendance on mortality in lung, breast, colorectal, and prostate cancer patients. Med Care Res Rev. 2009 Oct;66(5):542-60. doi: 10.1177/1077558709335536. Epub 2009 May 19. PMID: 19454624; PMCID: PMC3806880.

TAGGED WITH: brain cancer, brain tumor, brain surgery, craniotomy, neurosurgery

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