The First Steps After Glioma is Detected
- Your first meeting with your brain tumor team is “integral” to your care, says Dr. Jacob Mandel, a neuro-oncologist at Baylor College of Medicine, and you deserve the time you need to understand what’s going on.
- Before surgery, doctors may not know exactly what type of tumor you have, so early conversations focus on the plan and what to expect at each step.
- After surgery, a pathologist examines the tumor tissue. The pathology report confirms the tumor type and genetic features that may help guide treatment.
- When it comes to prognosis, Dr. Mandel asks patients first whether they want to know the data. Some want every detail, while others prefer to focus on next steps. Your input matters when it comes to making your treatment plan.
The first conversation with your doctor matters, and it’s OK to speak up about what you don’t initially understand.
Read MoreSurgery’s Role in Diagnosis
Some people first meet their brain tumor team in the hospital, before surgery. That timing can make the conversation harder.
“That can sometimes be a challenge because … before surgery, we’ll have an idea of what type of tumor they have or what type of cancer they have, but we don’t know for sure,” Dr. Mandel explains.
Scans, such as an MRI (magnetic resonance imaging, which uses magnets and radio waves to take detailed pictures of the brain), can show where a tumor is and what it looks like. But doctors usually can’t confirm exactly what kind of tumor it is until they look at a piece of it under a microscope.
“You kind of have to discuss the reason why we’re going through these different steps and what to expect for each of those steps,” Dr. Mandel says of those pre-surgery conversations.
The Pathology Report & Diagnosis
Once the tumor tissue is removed during surgery, a pathologist examines it. A pathologist looks at the tissue under a microscope and runs other lab tests. They document their findings in a pathology report.
This report confirms what type of tumor you have. For many brain tumors, it can also describe genetic features of the tumor cells, which can help guide treatment.
“After surgery, it becomes a different discussion… you’re waiting typically on the pathology,” Dr. Mandel says.
Waiting can be very difficult, so be sure to ask your team roughly when results usually come back and how they’ll share them with you.
What to Know About Glioma
Once the results are in, your doctor can compare your situation with people treated in the past for the same tumor type. That helps shape your options. With the pathology, Dr. Mandel says, you’ll have a clearer idea what your treatment options are.
It’s a good idea to ask for a copy of your pathology report. It can be useful if you ever want a second opinion.
Prognosis means the likely course of a disease, including how it may respond to treatment. Some brain tumors are especially hard to talk about, Dr. Mandel explains. One example is glioblastoma, a fast-growing tumor that starts in the brain’s glial cells, which support nerve cells.
“It can often be difficult … discussing the prognosis,” he explains. “But I think it’s something that you want to at least broach with the patient.”
Making Treatment Choices: Your Input Matters
Dr. Mandel explains that patients differ a great deal in how they approach a diagnosis.
Some want to be incredibly involved in making treatment decisions, while others would prefer not to know the specifics of their prognosis.
He says he first explains, “We have this data. Do you want to know it? Some patients want to know everything and as much as they can about their tumors.
“Other times, patients are more interested in the next steps and do not want to be overwhelmed,” Dr. Mandel adds.
Neither choice is wrong. You can also change your mind later. Patient input and preferences matter when it comes to making a treatment plan.
Make the Most of That First Visit
When you first meet with your treatment team, experts recommend some simple steps to help you understand and get the most out of your time together.
Consider the following tips:
- Bring someone with you: A family member or friend can listen, take notes, and remember things you might miss.
- Write questions down beforehand: Stress makes it easy to forget what you meant to ask.
- Ask if you can record the conversation: If your doctor doesn’t mind, this can be very helpful later on.
- Ask about monitoring: Learn who you can call with questions between appointments.
- Ask about clinical trials: These research studies test new treatments, and your doctor can tell you whether one might fit your situation.
- Consider a second opinion: Many doctors welcome it, especially for brain tumors.
Dr. Mandel describes his goal simply. It’s “trying to talk to the patient, trying to talk to the family, finding out… what’s important to them [and] making sure that really all of their questions are answered.”
That’s what a good first conversation should feel like. If it doesn’t, you’re allowed to ask for more.
Learn more about SurvivorNet's rigorous medical review process.
