41-Year-Old Man Needed To Relearn How To Speak After Brain Tumor Battle, Now He’s Urging Others Not To Ignore Warning Signs In His Book

Speaking to BBC in a recent interview, Shaw said he wrote his book “Brain Tumours, John Bonham and Fat Pigeons,” to spread awareness of the brain tumors after his life-altering brain tumor journey, adding, “The book is a tale to stop other people from making the same mistakes.”

Shaw was diagnosed with low-grade hemangioblastoma, which is described by the Genetic and Rare Diseases (GARD) Information Center as a “rare, benign, highly vascularized tumor of the central nervous system, most often located in the cerebellum or spinal cord, presenting in adulthood and manifesting with dizziness, nausea, malaise, headache, bladder or bowel dysfunction, numbness, weakness and pain in the upper or lower extremities, and often associated with von Hippel-Lindau disease (VHL).”

RELATED: What Is Von Hippel-Lindau (VHL) Disease? Is It Inherited?

A 13-hour surgery successfully removed the tumor, but left him without the ability to walk, needing a wheelchair, and unable to talk.

Thankfully, after four months recovering in the hospital and another eight months in a rehabilitation center, he learned how to speak again. However, during that time he was also diagnosed with ataxia, a neurological condition that causes difficulties with muscle coordination and balance.

With the help of BBC, he’s warning the public, “If you think that there is something abnormal there, don’t ignore it, it won’t go away.”

He explained further to Brain Tumour Research, “As I write this now, I’m 41 and life is good. However, I am in a wheelchair, I have severe double vision, ataxia, speech difficulties, and a few physical issues. These were all caused by a brain tumor that was removed when I was 24.

“I started noticing I was having head pains about four months before my diagnosis. I didn’t take action or try very hard to find a solution until it was almost too late.”

Shaw continued, “The signs weren’t obvious at first. For example, I was going to sleep with the fan on every night, but it was summer so I didn’t think much of it. I was experiencing shortness of breath but had recently started back at the gym after gaining weight so assumed that was why.

“The signs then started to become more obvious. When I woke up, I would sit on the side of the bed and wait for the throbbing in my head to start, and then wait about a minute for it to stop. Stepping over the side of the bath into the shower each morning would set it off. I stopped using some machines at the gym because the pain in my head was too much.”

However, then admitted, “It took seven doctors’ visits and collapsing at home and being found on the bedroom floor by my girlfriend before I got an MRI scan. Looking back now, the outcome seems obvious. But I wasn’t expecting it.

“I still remember being told that they had ‘found something.'”

Fast-forward to now, Shaw says he’s unable to walk without help so he still needs a wheelchair. However, he does have the strength to stand up using something to help him, but he has no balance.

He also is very weak on his right side and uses his left hand for most things. Shaw also noted that he starting struggling with double vision after his surgery and now wears “frosted lens” to help see since one eye is misaligned.

Regardless of his struggles, he offered some more insight into why he wrote his book, saying, “Hope is vital, as is acting on that hope. I have always had hope and always thought I had more to give, but acting upon it proved a stumbling block for a long time.

“I had plenty of opportunities to identify what quite possibly was a non life-threatening brain tumor. My procrastination is the reason I’m in the situation I find myself now. The book is a cautionary tale for somebody who may be experiencing or might experience similar symptoms in the future.”

He concluded, “Sort it now, it won’t go away. It’s also to illustrate that there is light at the end of the tunnel. I feel very fortunate to be able to share my story, and maybe stop somebody making the same mistakes as me.”

Understanding Brain Tumors & Treatment Options For Brain Cancer

Brain tumors can impact a person’s brain function and overall health — but how much depends 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.

Brain tumors may be benign (non-cancerous) and malignant (cancerous). There are various types of brain tumors, with gliomas being the most common cancerous type of aggressive primary brain tumors.

What is a Glioma: Understanding Types & Standard of Care

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.

RELATED: Understanding the Treatment Path for Glioma Patients

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.

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

• 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
• A patient’s overall health

Types of Cancerous and Non-Cancerous Brain Tumors

A brain tumor can affect you differently depending on its location and if it is cancerous. Some brain tumors are non-cancerous (or benign). According to the National Cancer Institute, some examples of these types of brain tumors include:

• Chordomas are primarily benign and slow-growing and are often found near the tailbone or where the spine meets the skull.
• Craniopharyngiomas are rare, slow-growing tumors that don’t spread to other parts of the brain or body. They form near the pituitary gland near the base of the brain.
• Gangliocytomas are rare tumors of the central nervous system that tend to form on the temporal lobe (the left or right side of the brain).
• Glomus jugulare are rare and slow-growing tumors.
• Meningiomas are rare brain tumors that usually form on the outer layer of tissue that covers the brain (dura mater).
• Pineocytomas are rare and slow-growing tumors located in the pineal gland near the middle of the brain.
• Pituitary adenomas are slow-growing brain tumors of the anterior pituitary located in the lower part of the brain.
• Schwannomas are rare tumors that grow on the cells that protect nerve cells. They are called Schwann cells.
• Acoustic neuromas (vestibular schwannoma) are slow-growing tumors that develop from the nerves that help balance and hearing.

Other brain tumors are malignant or cancerous. These kinds of tumors include:

• Gliomas are the most common form of cancerous and aggressive primary brain tumors.
• Astrocytoma (glioma) forms in astrocytes (star-shaped cells). Depending on how aggressive or fast they grow and impact brain tissue, these tumors are classified into four grades.
• Ependymomas are tumors classified into three grades depending on how aggressive or fast they grow.
• Oligodendroglioma tumors are classified into grades depending on their growth speed. Grade 2 oligodendroglioma tumors are slow-growing and can invade nearby tissue, but they may not present symptoms for many years before detection. Meanwhile, grade 3 oligodendroglioma tumors proliferate.
• Medulloblastoma tumors are classified into four different grades depending on their aggressive nature or how quickly they grow.
• Glioblastoma, which is considered a central nervous system (CNS) tumor, is the most common and aggressive brain tumor in adults.

Pushing For A Correct Diagnosis

When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. 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.

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.

Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.

“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” he said.

Be Pushy, Be Your Own Advocate. Don’t Settle

Dr. Murrell says not every patient will “fit into” the mold, so it’s important to “educate yourself and be your own health care advocate.”

“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Murrell said. “And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”

Avoiding Provider Bias – Is Your Doctor Understanding You?

While your doctor has undergone years of training and practice, they are still human, and may come with their own set of biases that can impact how they treat patients.

To combat these biases and really get the most out of your interactions with your doctor, you should provide her or him with plenty of information about your life and ask plenty of questions when things aren’t clear. To better understand how you should approach conversations with your doctor, we previously spoke with Dr. Dana Chase, gynecologic oncologist at Arizona Oncology.

According to Dr. Chase, physicians, like many of us, can be a bit biased when seeing patients. She made it clear that these biases are rarely sinister, but rather unconscious and more subtle.

She explained, “We have certain beliefs that we don’t know about. We might look, for example, at an older woman, and just by the way she looks we might make certain assumptions, and we might not even know that we’re making these assumptions.”

Let’s Talk About Provider Bias

Clearing up misconceptions is important, but so is understanding what your doctor is telling you, Dr. Chase noted. Overall, she advises women to speak up and ask questions when they don’t understand something.

“It’s never a bad thing to ask for something to be repeated, or to ask the doctors to explain it in different terms.”

So next time you go to your physician, speak up if you need clarity, so your doctor can understand you and you can understand them.

Leading Experts Urge Us to Be Proactive

“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,” National Cancer Institute Chief of Surgery Steven Rosenberg told us in a previous interview, “because finding a doctor who is up to the latest of information is important.”

RELATED: Second (& Third) Opinions Matter When Deciding Between Surgery or Radiation

As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options. Also, in some instances the specific course of treatment is not clear cut. That’s even more reason why understanding the potential approaches to your disease is crucial.

RELATED: Burned Out Doctors Make More Mistakes: It’s OK To Talk Openly About This With Them

At the National Cancer Institute, there is a patient referral service that will “guide patients to the right group depending on their disease state so that they can gain access to these new experimental treatments,” Rosenberg says.

Cancer Research Legend Urges Patients to Get Multiple Opinions

Furthermore, getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers. “So there may be a conflict of interest if you present to a surgeon that is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, tells SurvivorNet.

RELATED: Mental Health & Cancer: A Third of Patients Aren’t Getting the Help They Need

Other reasons to get a second opinion include:

• To see a doctor who has more experience treating your type of cancer
• You have a rare type of cancer
• There are several ways to treat your cancer
• You feel like your doctor isn’t listening to you, or isn’t giving you good advice
• You have trouble understanding your doctor
• You don’t like the treatment your doctor is recommending, or you’re worried about its possible side effects
• Your insurance company wants you to get another medical opinion
• Your cancer isn’t improving on your current treatment

Bottom line, being proactive about your health could be a matter of life or death. Learn as much as you can from as many experts as you can, so that you know that you did your best to take control of your health.

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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