Living with IDH-Mutant Glioma: Understanding Diagnosis, Treatment Options and Supportive Care

In an interview for CURE Educated Patient® Updates, Drs. Alexandra Miller, Daniel Orringer and Jonathan Yang discussed how understanding diagnosis, biomarker testing such as IDH1 status and treatment options helps patients with IDH-mutant glioma make informed decisions.

They emphasized asking key questions after biopsy or surgery, considering standard therapies and clinical trials, discussing quality of life and work priorities, and involving caregivers for support and advocacy.

CURE: Could you provide a general overview of the event and some key highlights?

This event focused on helping patients and caregivers better understand glioma, from diagnosis through treatment. A key highlight was breaking down complex topics in a practical, patient-centered way and emphasizing shared decision-making with modern data.

What aspects of biomarker testing are important for patients with glioma to know, especially IDH1 status, and what questions should they be asking their care team?

Biomarker testing helps guide diagnosis and treatment. Patients should ask what their results mean, how they affect treatment options and whether additional testing is needed.

The slide deck suggest a “Pro Tip” of bringing someone to take notes. What are the top three questions every patient should ask their team immediately after a biopsy or surgery?

Patients should ask what the diagnosis is, what the next steps are and who to contact with questions moving forward.

At the event, you discussed different therapies in the first line and beyond. What treatments should patients be aware of, or again, that they should maybe be asking their physicians about if it's an option for them?

Treatment often includes surgery, radiation and systemic therapies, depending on the situation. Patients should ask about clinical trials and standard options.

Why do you feel like events like this or other education is important for patients when it comes to treatment decision-making?

Balanced and well informed education helps patients feel confident, allowing them to take an active role in treatment decisions.

How do you feel like quality of life should play a factor when it comes to discussing treatment with your physician? Thoughts for those going back to work while undergoing treatment?

Quality of life should be part of every treatment discussion. Patients should talk openly about daily functioning, work and personal priorities. There is an overgeneralization on the quality of life impact with chemotherapy and radiation therapy, mainly derived from non-contemporary data, and patients and their providers should discuss these treatments and understand their impact on survival and quality of life using contemporary data, in addition to other treatment options including targeted therapy and clinical trials.

Why is it also important for the caregivers to be involved in educating themselves around these topics as well?

Caregivers play a key role in supporting patients. Being informed helps them provide better support and advocacy.

What do you hope was the No. 1 thing that the patients or their loved ones took away from the CURE Educated Patient Updates event?

We hope patients and loved ones left feeling informed, supported and empowered with balanced discussions of all treatments and their impacts. 

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