If I Were Diagnosed With Glioblastoma Today: What I Would Do

Recently I had an experience that made me reflect deeply on what steps I would take if I was faced with a glioblastoma diagnosis. When my eye doctor suspected a possible brain tumor or stroke based on my symptoms, he ordered a brain MRI. Thankfully, the results ruled out both conditions.

However, during the three days I awaited the MRI results, I spent considerable time pondering what actions I’d take if the scan had revealed a glioblastoma—the same type of tumor my father battled. Those three days reminded me firsthand of what every patient experiences: the shock, the fear, and an urgent drive to understand the next steps.

Having spent decades assisting tens of thousands of brain tumor patients and families through the Musella Foundation, I’ve observed which treatments show promise, where the common pitfalls are, and which strategies that offer the best odds. If I were diagnosed with glioblastoma now, my approach would be shaped by these hard-earned insights.

Over the past twenty years, glioblastoma treatment options have gradually expanded. When my father underwent treatment, choices were sparse. Since then, medical advances include temozolomide, better imaging, enhanced surgical techniques, tumor treating fields (Optune Gio), molecular tumor profiling, and a surge of immunotherapy research. Despite its challenges, glioblastoma now faces a broader scientific arsenal than ever before.

This is not medical advice. Every case is different. But if I were diagnosed today with glioblastoma, I would approach it as both an urgent medical problem and a strategic, multi-front campaign. The goal wouldn’t just be treatment—it would be maximizing time, function, and access to the best evolving science.

First Step: Move my care quickly to a top-tier brain tumor center

I would get care at (or at least a second opinion from) a major brain tumor center—places that treat a high volume of glioblastoma and run clinical trials. Experience matters here.

I’d want:

• A neurosurgeon who specializes in brain tumors
• A neuro-oncologist leading systemic care
• Access to trials and advanced imaging

All of these are going to be more accessible at a top tier brain tumor center.

Second step: Surgery

My first treatment would be surgery, so my first task is finding an experienced neurosurgeon.

It is extremely important to choose an experienced neurosurgeon who specializes in brain tumors and works with a dedicated neuro-oncology team. The goal is always to remove as much tumor as possible while preserving critical brain function. In general, the more tumor that can be safely removed, the better the chances for longer survival.

I am fortunate to live close to an outstanding neurosurgeon who specializes in brain tumors and understand how critical surgical expertise can be.

For those who do not already know a good neurosurgeon, the American Brain Tumor Association maintains a list of brain tumor centers: https://www.abta.org/about-brain-tumors/treatments-side-effects/find-a-brain-tumor-center/

Third Step: Maximize safe surgical resection

If surgery is possible, I would strongly pursue maximal safe resection. The extent of tumor removal is one of the few factors clearly associated with better outcomes.

BEFORE SURGERY I’d ask about:

• Awake mapping (if tumor near functional areas);
• Pre-surgical clinical trials including photodynamic therapy, where a special light is applied to destroy tumor cells that have taken up the Gleolan. This approach is still experimental but interesting enough that I would discuss it with the surgeon.
• Gleolan (5-ALA) during surgery. Gleolan can help the surgeon distinguish tumor from normal brain tissue, which may increase the chances of removing more of the tumor safely.
• Preserve tumor tissue in the correct manner for possible creation of DC-Vax or other vaccines that need the tumor tissue preserve in a specific manner
• Have a plan to have the tumor tested – let the experts at our patient navigation program help figure out the best tests for my situation.

Fourth Step: Standard Therapy (Radiation with Chemotherapy)

Most patients receive radiation therapy combined with temozolomide after surgery.

Decisions should not be rushed, but it is also important not to delay necessary treatment, so I would likely proceed with the Standard of Care therapy (after surgery, assuming it was possible), including radiation with temozolomide (Temodar), but with an emphasis on precision.

I’d look for:

• Radiation technology selection carefully matched to the tumor environment.
• Advanced radiation planning and/or the use of MRI guidance;
• Careful management of any side effects.

Fifth Step: Standard Therapy (Chemotherapy)

Temozolomide is currently the standard chemotherapy for glioblastoma.

A biomarker called MGMT methylation helps predict how well this drug may work.

• If MGMT is methylated, temozolomide is more likely to help.
• If MGMT is unmethylated, the chance of benefit is lower.

Sixth Step: Strongly Consider Optune Gio (Tumor Treating Fields)

Optune is an FDA-approved device that delivers tumor treating fields through arrays attached to the scalp.

Clinical trials have shown that adding Optune to standard therapy has produced the best survival results of any currently approved treatment approach for newly diagnosed glioblastoma.

The device works best when used over 90% of the time.

I have thought long and hard about using Optune. It is clearly a significant hassle and lifestyle adjustment.

However, because it currently has the best survival results of any approved therapy, I would try it. If it became too much for me I might stop, but I would feel that I should at least give it a serious attempt.

However, there is an important consideration regarding Optune. Medicare and some private insurance plans require that Optune be started within about 7 weeks after finishing radiation in order for them to cover the cost. Optune is very expensive and missing that window could mean losing insurance coverage.

There is always reason for hope.