25-Year-Old Man Dismissed Headaches & Nosebleeds To Busy Work Schedule & Heavy Lifting. It Turned Out To Be Rare Type Of Brain Tumor

Speaking to Brain Tumor Research, Hinch said he was diagnosed with a Grade 2 astrocytoma brain tumor, which is rare, only after he suffered a seizure while commuting to work on August 19, 2019. He woke up four days after the seizure, after being induced into a coma, which was when he was informed he had brain cancer.

Astrocytoma brain tumors develop from astrocytes, which are “star-shaped cells” found in the brain. The American Brain Tumor Association describes these types of tumors as “slow growing and tend to invade surrounding tissue.” This is a type of glial tumor and makes up “”0 percent of the tumors,” according to research published in StatPearls.

Additionally, research published in the National Library of Medicine, explains that grade 2 astrocytoma is usually seen in adults and “may progress to glioblastoma.”

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Hinch, who is now on his third round of treatment, told Brain Tumor Research, “Looking back, I now realize there were signs: headaches, nosebleeds, things I chalked up to long work hours, heavy training at the gym, and maybe not drinking enough water. I even went to the opticians, but nothing was picked up. My grandfather had a benign brain tumour, but doctors told us it wasn’t hereditary, so it was never really on my radar.”

Looking back to what led to his diagnosis, Hinch said, “When my parents arrived at the hospital they were taken to the family room and told by the consultant that due to 45 minutes of continuous seizures, I had to be put in an induced coma. The seizures also caused complications with my heart, so I was placed in intensive care.

“Doctors had run multiple tests while I was in the coma and found a shadow on my brain. It was a grade 2 astrocytoma. Early indicators suggested a grade three or four, so medical staff were surprised that results came back as a grade two.”

Soon after, he met with a neurosurgeon and his oncology team at the University Hospital of Wales, The Heath, where he was informed only part of the tumor could be surgically removed.

Despite being told he his life expectancy was three to five years, or more with a “positive” mindset, Hinch was determined to beat the disease, and he still is.

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“Doctors told me there were risks to the surgery, possible brain and nerve damage. My options were to be overcome by the disease or put my faith in the hands of the surgeons. I chose surgery,” he explained, insisting he wanted “to fight back.”

After undergoing surgery, he endured a bout of meningitis and needed to be hospitalized again, followed by seven weeks of radiotherapy and 12 rounds of chemotherapy.

Hinch, who admitted his recovery period was difficult, as he lost his hair and gained weight, finished treatment and celebrating by ringing the bell in 2021, making him feel “alive again.”

However, two years later he experienced “mood swings, brain fog, and confusion,” which he thought was depression, but he had more “tumor activity.”

He continued, “I started a second round of treatment 20 months’ worth of chemotherapy condensed into 10. I was mentally prepared this time, but it was still brutal. When I finished treatment, I rang the bell for a second time.

“But just four months later, I started getting strange pressure in my neck and jaw. Seizures returned. I had five or six a day. My medication had to be adjusted. I lost my license again. It was heartbreaking. I went back to University Hospital of Wales, The Heath for another brain scan. I was told the tumor was back.”

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Although Hinch is undergoing his third round of treatment and battling fatigue, he remains grateful and hopes his cancer journey will “give others strength.”

Hinch concluded, “I’ve chosen to share my journey to give others strength. If I can face this a third time, then maybe someone else out there can too. I believe I was given this challenge to help others understand what it’s really like, not just for the patient, but for the whole family.

“Meanwhile I have been sharing my story on social media to raise awareness. … This disease picked me, but it picked the wrong person this time round.”

Understanding Brain Tumors

Brain tumors account for 85-90% of all primary central nervous system (CNS) tumors, according to the American Society of Clinical Oncology (ASCO). In 2023, the ASCO estimated that 24,810 adults (14,280 men and 10,530 women) in the United States would be diagnosed with primary cancerous tumors of the brain and spinal cord.

The central nervous system consists of the brain and spinal cord and acts as the main “processing center” for the body’s nervous system. The normal function of the brain and spinal cord can become difficult if there’s a tumor putting pressure on or spreading into normal tissue close by.

One Survivor’s Advice for Taking On Brain Cancer

There are many different types of brain and spinal cord tumors and some of which are more likely to spread into nearby parts of the brain or spinal cord than others. Slow-growing tumors may be considered benign, however, even these types of tumors can lead to serious problems.

Meanwhile, symptoms of brain tumors, as a whole, are usually caused by increased pressure in the skull. This pressure can stem from tumor growth, swelling in the brain, or blockage of cerebrospinal fluid (CSF), the American Cancer Society explains.

General symptoms may include:

• Headache
• Nausea
• Vomiting
• Blurred vision
• Balance problems
• Personality or behavior changes
• Seizures
• Drowsiness or even coma

Additionally, MD Anderson Cancer Center notes that changes in the ability to smell can also be a sign of brain tumors, and, more specifically, “strange smells” can be a symptom of seizures, which can result from brain tumors.

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It’s important to note that these symptoms are not exclusive to brain tumors. Still, you should always speak with your doctor if you’re experiencing any health problems.

Meanwhile, 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.

Understanding Gliomas

There are various types of brain cancers and tumors that someone may be diagnosed with, so it’s important to understand that a glioma is a tumor originating in the central nervous system (CNS), specifically in the brain or spinal cord. A glioma originates in glial cells. Glial cells are supportive cells in the brain that protect and maintain the neurons. These types of tumors can either be benign (non-cancerous) or malignant (cancerous).

“Glioma is a broad term that refers to a whole range of different types of primary brain tumors,” Dr. Alexandra Miller, Director of the Neuro-Oncologist Division at NYU Langone Health, tells SurvivorNet.

“They’re tumors that originate in the brain and very rarely spread outside the brain to other parts of the body,” Dr. Miller continued.

Glioblastoma (GBM) is the most aggressive and lethal form of primary brain tumor. Classified as a Grade 4 glioma by the World Health Organization (WHO), glioblastoma presents significant challenges for treatment due to its highly invasive nature, rapid growth, and resistance to most conventional therapies.

WATCH: Understanding Gliomas

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

Clinical trials help doctors better understand cancer and discover more effective treatment methods. They also allow patients to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.

RELATED: College Student Thought Severe Headaches Were School Stress — Scans Revealed a Brain Tumor 

Within the U.S., all new drugs must go through clinical trials before the FDA approves them. Although the rewards of clinical trials can be great, they also come with risks. Talking to your doctor about this before enrolling in a trial is important.

The Grading System of Gliomas

Gliomas are graded on a scale of I to IV, with higher grades indicating a more aggressive tumor. This grading is based on several factors including the type of glioma, the genetics of the cancer, as well as the appearance of the tumor cells under a microscope. The more abnormal the cells look, the higher the grade, and the faster the tumor is likely to grow and spread. Here’s a quick overview:

• Grade I-II gliomas – These are considered low-grade and tend to grow slowly. “The grade one is a very indolent, benign tumor that basically can be cured with surgery alone,” Dr. Henry Friedman, Deputy Director of the Preston Robert Tisch Brain Tumor Center at Duke, tells SurvivorNet.
• Grade III gliomas – These are considered high-grade and tend to grow more rapidly. Grade III gliomas are typically classified as malignant and typically require more aggressive treatment which can include surgery, radiation, and chemotherapy.
• Grade IV gliomas – These are the most aggressive gliomas which are locally aggressive and require treatment intensification. Glioblastomas are the most common grade IV glioma, “which is by far the most well known and most feared tumor in the lay population and quite frankly, the medical population as well,” Dr. Friedman explains.

Although Grade IV gliomas are the most aggressive glioma and may require several types of treatment including surgery, radiation, and chemotherapy, there can be challenges in treating low grade gliomas as well. When making decisions on treatment, several factors are taken into consideration including location of the tumor, ease of surgery and ability to resect, neurologic deficits, patient age, tumor size, and overall health.

How Does Glioma Present? Understanding Treatment Options

Gliomas can present a variety of ways. The symptoms are often non-specific, meaning there is no slam-dunk symptom or key finding that is common to all gliomas. Symptoms can also be related to tumor location, and more commonly the increased pressure caused by the mass inside the skull, which can disrupt blood flow and block the flow of cerebral spinal fluid. Based on the location of the glioma there can be associated symptoms that arise including personality and speech changes.

With increased pressure in the skull you can experience symptoms such as headaches, nausea, vomiting, and changes in vision.

Other symptoms that can sometimes be seen include:

• Seizures
• Cognitive difficulties, like memory loss or trouble concentrating
• Weakness or numbness in certain parts of the body
• Vision or speech problems

Again, none of these symptoms are specific to gliomas and can be caused by a variety of medical conditions. There are several steps in the workup needed before you can be diagnosed with a glioma.

When it comes to treatment, “The first step is always the neurosurgery. How much can you take out? Is it safe to do surgery? Do you have to rely on a biopsy? Can you even do a biopsy?” says Dr. Friedman. These are all questions and considerations that need to accounted for when deciding what treatment is most appropriate.

Why Some Gliomas Return After Surgery or Radiation Therapy

Once the biopsy is obtained and the diagnosis of glioma is made, various treatment options can be recommended. The recommendations take into account the type of the glioma, the tumor grade, and well as patient specific factors including tumor location, size, your age, and overall health.

The main treatment options are:

• Observation – Some gliomas that are benign, small, and without symptoms or tumors located in inoperable locations can be recommended for observation.
• Surgery – Surgery is often the first-line treatment for gliomas, with the goal of achieving maximal safe resection where the largest amount of tumor is removed without causing significant neurologic deficits. For low-grade gliomas, surgery alone can sometimes be curative.
• Radiation therapy – This uses high-energy x-rays to target and kill tumor cells. Radiation is often used after surgery to target residual tumor cells.
• Chemotherapy – These medications kill or slow the growth of cancer cells. Chemotherapy can be used alongside radiation, or following radiation and is often used in higher-grade tumors.
• Targeted therapy and immunotherapy – These are newer treatments that are designed to target specific genetic mutations in the tumor or to stimulate the immune system to fight the cancer. Their role in the treatment for gliomas is continuing to evolve.

The important thing to remember is that every treatment plan and recommendation made by your healthcare team is personalized based off of details specific to your disease, your overall health, and treatment goals.

Living with a Glioma

Low-grade gliomas can sometimes be cured, but they may come back, which is why it is important to be monitored closely with regular examinations and imaging.

“Gliomas are unique tumors in that they’re very infiltrative tumors,” Dr. Miller adds. “So it’s almost like if you throw up a handful of sand, you can never pick up every grain of sand. We know that there are always tumor cells that are scattered beyond the margins we can see on an MRI. Even if a best case scenario where a surgeon can take out the majority of the tumor, we know that there are residual cells that are there that have to be monitored over time.”

In higher-grade gliomas, like glioblastomas, the follow up and post-treatment course can present more of a challenge as they can often recur. The important thing to consider is that the decision to provide treatment is always made with the goal of providing the best possible outcome while also managing symptoms and side effects.

Molecular Testing for IDH Inhibitors in Glioma Patients

The Importance of Advocating for Yourself

Standing up for yourself is important. If you feel that you’re being dismissed or mistreated by a doctor. Getting a second opinion is crucial if something doesn’t feel right. Experts tell SurvivorNet that no one knows your body better than you, so if you feel like something is wrong, keep pushing for answers.

Dr. Zuri Murrell, a colorectal surgeon at Cedars-Sinai Medical Center, previously told SurvivorNet that sometimes, patients need to be pushy.

“From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work,” Dr. Murrell said.

And as a patient, “If you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.”

Ultimately, patients advocating for their health can lead to better patient outcomes. This is especially important when you find your doctor has misdiagnosed your symptoms.

A component of advocating for yourself in healthcare includes going back to the doctor multiple times and even getting multiple opinions.

Dr. Steven Rosenberg is the National Cancer Institute Chief of Surgery, and he previously told SurvivorNet about the advantages of getting input from multiple doctors.

Cancer research legend urges patients to get multiple opinions.

“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care. Because finding a doctor who is up to the latest of information is important,” Dr. Rosenberg said.

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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