35-Year-Old Man Diagnosed With Glioblastoma Months After Doctors Dismissed His Severe Symptoms: His Warning to Others

Collins, who has since had the tumor removed, underwent radiotherapy and chemotherapy treatment, and created a GoFundMe, which has received more than $240,000, to pay for an expensive, but promising immunotherapy vaccine called DCVax-L.

He explained in a blog post that he’s hoping to “raise money to pay for a vaccine that is the most promising treatment for Glioblastoma in 30 years, and can potentially add years to my life.”

On the vaccine, Mofitt Cancer Center notes: “While the glioblastoma vaccine represents a promising frontier in cancer research, it is not intended to be a standalone solution. Instead, it may be used in combination with other treatments, such as surgery, radiation therapy and chemotherapy, to provide a more comprehensive attack on glioblastoma.

“The goal is to improve the outcomes of patients who have this challenging and aggressive form of brain cancer and provide them with the best possible quality of life.”

According to Brain Tumour Research, Collins’ stroke ultimately led to his brain tumor discovery in October 2023. However, his diagnosis followed more than 10 years of him experiencing low energy and anxiety.

“For most of my adult life I’ve struggled with my emotions, including low mood and anxiety, which I take medication for. I noticed my depression worsen in the last two years, but I was going through a divorce and had moved back home with my parents so had lots going on in the background. I used going to the gym and playing football as a way to manage my mental health,” he explains on Brain Tumour Research’s website.

“In July 2023, my symptoms manifested physically. It started with headaches; I felt as if there was an explosion going off in the middle of my head. The sensation was like a pickaxe stabbing my skull from the inside. It came in waves, lasting for 10 seconds every 10-15 minutes. I later found out these are called thunderclap headaches.”

Days later his doctor suggested he get his eyes checked by an optician, but then he was referred back to his doctor. Around that time he experienced his first seizure, and then shortly after, multiple seizures, which prompted him to go to the hospital and get an MRI.

In a blog post, referring to his tumor as “my upstairs intruder,” he recounted the tumor causing “a wave of tonic-clonic seizures” and paralysis of the left size of his body through a hemorrhagic stroke.

He added, “Due to the pressure, my brain shifted 10mm (which in brain terms is a lot) to the left in my skull, so the whole world went a bit sideways.”

Collins then offered a health warning to his blog readers, writing, “If you’re around my age and start having seizures out of nowhere, a thunderclap headache or go temporarily blind, don’t let doctors dismiss you, insist on having an MRI scan and push for a second opinion from a neurologist.”

“Please, please fight for your health, no matter how awkward or inconvenient you’re made to feel. That’s what I’m now going to be focusing on, fighting this disease. And I will not be going gentle into that good night,” he added.

This past October marked one year since Collins’ diagnosis and he appears to be in good spirits and moving through life with hope for the future.

He wrote in a Nov. 26 Instagram post, “MRI results are in and the little fecker in my swede [head] continues to shrink!!

“My prayers at RS Thomas’ old church are being answered. Don’t know if you’re up there or what god, but cheers butt! I’ll have another scan in three months and go again. To my tumour, thanks for behaving yourself. To everyone, thanks for all the love and messages of support.”

As per his recent Instagram post, it’s unclear whether the shrinking tumor he’s referring to is part of the one that was removed or another that arose during his cancer journey. Either way, we’re delighted to hear he’s living well and maintaining faith through adversity while spreading awareness for the disease.

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A post shared by Matthew Collins (@emmseasquared)

Understanding Glioblastoma Tumors

Glioblastoma is considered a central nervous system (CNS) tumor.

According to the National Cancer Institute, the average survival rate of glioblastoma is 15 months with treatment and less than six if left untreated. While there is a five-year survival rate averaging 6 percent, those individuals will never be cancer-free. They must continue receiving radiation and chemotherapy for the rest of their lives.

Glioblastomas are tricky to treat and manage because their cells are heterogeneous, meaning that each one must be individually targeted to slow tumor growth. Surgery cannot remove all the cancer because the tumor burrows into the brain, so the tumor starts to grow again immediately after surgery.

Glioblastoma risk factors can include:

• Prior radiation exposure
• Gender: men are more likely to get glioblastoma than women
• Age: people 50 years or older are more likely to get glioblastoma
• Certain genetic syndromes, including neurofibromatosis, tuberous sclerosis, von Hippel-Lindau disease

Symptoms for glioblastoma can vary depending on the area of the brain where the tumor begins and spreads and its growth rate, according to MD Anderson Cancer Center. But common symptoms of glioblastoma can include:

• Headaches
• Seizures
• Changes in mental function, mood, or personality
• Changes in speech
• Sensory changes in hearing, smell, and sight
• Loss of balance
• Changes in your pulse and breathing rate

Current Options to Treat Glioblastoma

The Food and Drug Administration (FDA) has approved some drug treatments, including temozolomide (Temodar), to help patients living with this aggressive disease.

Temozolomide is a chemotherapy drug patients can take after surgery and radiation therapy.

Dr. Daniel Wahl, professor of radiation and oncology at the University of Michigan, explains Temozolomide is an oral drug that  “slows down tumor growth.”

“Patients with GBM have effective treatment options; there are four of them: surgery, radiation, chemotherapy, and tumor targeting fields. These are electric fields that we can use to treat these cancers,” Dr. Wahl said.

Other FDA-approved drugs for treating glioblastoma include lomustine (Gleostine), intravenous carmustine (Bicnu), carmustine wafer implants, and Avastin (bevacizumab).

Avastin is a targeted drug therapy that blocks glioblastoma cells from requesting new blood vessels that feed and allow the tumor to grow.

“Outcomes for these patients are still suboptimal. What I tell my patients is that we have these effective treatments, but what they do is they delay the time to when this tumor comes back. Only in exceptional circumstances would we ever talk about getting rid of one of these cancers,” Dr. Wahl said.

WATCH: Using electric sources to improve glioblastoma treatment.

Fortunately, research is ongoing to improve the prognosis for people battling glioblastoma. One area of promise is tumor-treating fields, which can help extend patients’ lives by two years on average, giving them hope.

Optune, the brand name for the tumor-treating field delivery device, was launched in 2011 and approved by the FDA in 2015. It is a wearable and portable device for glioblastoma treatment for adult patients aged 22 years or older.

“There’s been a very exciting development of tumor treating fields, which are electrical fields that have been applied to the brain,” Dr. Suriya Jeyapalan, a neurologist at Tufts Medical Center, previously told SurvivorNet.

TTFields use low-intensity electric fields to disrupt the cell division process, making it harder for cancerous cells to multiply.

Despite Optune’s hope, not all cancer experts agree with its approach, including Dr. Henry Friedman, a renown neuro-oncologist at Duke Cancer Center.

“Although the National Comprehensive Cancer Network (NCCN) recognizes Optune within its guidelines as a therapy for glioblastoma, many people don’t believe it adds value. At Duke, for example, we don’t consider it a mainstay of therapy,” Dr. Friedman previously told SurvivorNet.

Brain Cancer Clinical Trials Offering Hope

In March 2024, early results in a phase I clinical trial published in The New England Journal of Medicine found three patients who saw significant reductions in their brain tumors, and one of them saw her tumor experience “near-complete tumor regression.”

Researchers made such progress using a form of CAR T-cell Therapy, a cancer treatment that re-engineers the immune system to target cancer from within.

Although the clinical trial phase for this treatment is far from complete, it presents an opportunity for further exploration of treating glioblastoma.

“The CAR T platform has revolutionized how we think about treating patients with cancer, but solid tumors like glioblastoma have remained challenging to treat because not all cancer cells are exactly alike, and cells within the tumor vary. Our approach combines two forms of therapy, allowing us to treat glioblastoma in a broader, potentially more effective way,” Dr. Bryan Choi, a neurosurgeon and associate director of the Center for Brain Tumor Immunology and Immunotherapy, Cellular Immunotherapy Program at Mass General Cancer Center and Department of Neurosurgery said in a news release.

CAR T-cell therapy works by re-engineering a patient’s immune cells into more efficient cancer fighters. The process starts with T-cells, white blood cells that help the immune system respond to threats in the body, such as germs and cancer cells.

After the T-cells are removed from a patient’s blood, doctors use an inactivated virus to insert new genes into them. The new genes carry instructions to create special proteins called receptors on the T-cell’s surface. The modified T-cells are multiplied and then given back to the patient.

Once the re-engineered cells are re-inserted into the body, the T-cells find and attach to a matching protein called an antigen on the surface of the cancer cells.

WATCH: CAR T-Cell Therapy Success Rates and Ability to Improve Quality of Life

Making Sense of a Brain Tumor Diagnosis

According to the American Society of Clinical Oncology (ASCO), brain tumors account for 85-90% of all primary central nervous system (CNS) tumors. They can either be cancerous (malignant) or non-cancerous (benign), and depending on where the tumor forms on the brain, doctors determine its type, potential symptoms, and potential treatment.

Brain tumors impact a person’s brain function and overall health, depending on their size, type, and location within the brain. Tumors that grow big enough and disrupt normal central nervous system functioning can press on nearby nerves, blood vessels, or other tissues. The disrupted central nervous system can present in various ways, making walking or maintaining balance difficult.

However, it’s important to know that brain tumors do not always cause symptoms.

Other signs of brain tumors may include:

• Headaches
• Difficulty speaking or thinking
• Weakness
• Behavioral changes
• Vision changes
• Seizures
• Loss of hearing
• Confusion
• Memory loss
• Treatments for Brain Tumors

Treatment options for brain cancer depend on a variety of factors, including the size and type of the tumor as well as the grade of the tumor.

Surgery, radiation, and chemotherapy are options doctors use to treat brain tumors. Cancer warriors are encouraged to talk to their doctor about their situation and the best treatment options.

WATCH: Treatment Path for Glioma Patients

The prognosis for brain cancer, or how likely it is to be cured, depends on a few things, including:

• The type of brain tumor
• How fast the brain tumor is growing
• The tumor’s location
• If there are DNA changes in the cells of the brain tumor
• If the entire tumor can be removed with surgery
• Your overall health

If you’re been diagnosed, your doctor will be able to help you understand your specific and unique circumstances and how they relate to your prognosis.

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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