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Staying Active and Physically Fit

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Written by Lisa Joerling – Head for the Cure Ambassador and Ganglioglioma Survivor

Benefits to Staying Active

Staying active has been such an important part of my brain tumor journey. Being physically active has been a great way to take care of my body and my mind. 6 years ago, when I had surgery, one nurse told me to take a walk around the block each day just to get outside and get moving, even if it was just going down the street. As I continued to heal and went back to college, I found I had plenty of opportunities to be active including yoga, gym classes and I found a love for running, specifically 5Ks. This was especially great when I discovered Head for the Cure the following year.

How I Stay Active

I’ve been able to find a great gym with a fantastic community of people, and my gym instructor is an awesome motivator and helps to push me to be my best. Staying active can look like many things. I enjoy challenging myself with different classes including yoga, barre, Zumba, cycling and most recently I have done some strength training/weight classes. I enjoy playing tennis and walking my dog or going on a run. The biggest challenge I have in staying fit is eating a healthier diet. My gym instructor always says you can’t out work a bad diet, so I try and eat nutritious foods and stay hydrated each day. I also use technology to help me stay fit. My Fitbit helps track my steps, sleep, heart rate and amount of days I exercise. I sync it with a calorie tracking app to track my food and nutrients.

Staying Motivated to Stay Active

I certainly have days where I am too tired to workout, having a headache, or my nerve pain is flaring up. I have worked on being patient with what my body needs each day and some days rest is the best thing to help me feel better. Treatment and fatigue can also make staying active a challenge. Going on a walk, doing chores around the house, gardening, playing with dogs and children can all be great low impact activities. Finding activities you enjoy and finding a workout buddy can help you stay active wherever you are in your brain tumor journey. We don’t have control over a lot when it comes to brain tumors, but we can control how we treat our body and try and be our best self each day.

Facts About Pediatric Brain Tumors

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Brain tumors can affect people of any age, gender, race, and at anytime in their lives. This means there is an equal need for research in pediatric brain tumors as there is adult brain tumors.

  • More than 28,000 children (0-19 years of age) are estimated to be living with a brain tumor in the US
  • The most prevalent brain tumor types in children (0-14):
    • Pilocytic Astrocytoma
    • Malignant Glioma
    • Medulloblastoma
    • Neuronal and mixed neuronal-glial tumors
    • Ependymoma
  • The cause of most childhood brain and spinal cord tumors is unknown.
  • About 4,600 children and teenagers are diagnosed with a primary brain or central nervous system tumor each year, or equal to 13 new cases per day.
  • While survival rates for many childhood brain tumors have improved over the past 30 years, survivors often suffer from lifelong side effects caused by their illness as well as by treatments such as surgery, radiation and chemotherapy.
  • Malignant (fast-growing) brain and spinal cord tumors are slightly more common in boys, while non-malignant tumors are slightly more common in girls.
  • Pediatric brain tumors are the leading cause of cancer-related death among children and adolescents ages 0-19, surpassing leukemia.

Statistics provided by:
A Kid’s Brain Tumor Cure PLGA Foundation
Pediatric Brain Tumor Foundation
National Brain Tumor Society
American Cancer Society

Choosing the Right Doctor for Brain Tumor Treatment

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Finding the right doctor, and entire treatment team, for brain tumor treatment is incredibly important for a patient. Doctors and survivors from across the country share where they see the importance in choosing the best team for treatment.

Dr. Nina Paleologos of Advocate Aurora Health shares the importance of choosing the right neurosurgeon based on the type of tumor and placement. An example she shares is having surgery for only a biopsy versus having a tumor resected. In the case of having a tumor resected, depending on its placement, a neurosurgeon with experience doing awake craniotomies could be an important factor to choosing the right surgeon.

Dr. Roy Jensen of the University of Kansas Cancer centers advises most if not all patients to seek second opinions when available. He also encourages seeking treatment at a NCI Designated Cancer Center when the option is available. When looking at centers for second opinions, the doctor that provided the initial diagnosis should be able to suggest options to you.

Hillary is a grade III/IV brain stem astrocytoma survivor and was treated at Texas Oncology. After her first MRI, she immediately knew she needed to see a neurologist, but which neurologist was the real question. With the help of family physicians she found Dr. Groves. Hillary notes that it’s important to find someone you can be comfortable with throughout the course of treatment and after.

Dr. Nick Avgeropolous from UF Health Cancer Center shares the value in feeling confident in the treatment team you’ve assembled. “But, I think that there needs to be also some trust in the person who’s caring for you or the team who’s caring for you or some independent validation or verification. And that’s how confident that a person is doing the right thing or making the right decisions, irrespective of outcome.”

Lisa is a ganglioglioma survivor and continues to manage her symptoms. Lisa knew she had the right surgeon from the moment she met him. She felt a level of comfort with him that was important to her and her family throughout her care, and she describes him as caring, funny, and on top of everything.

Colin is a grade II oligodendroglioma survivor and was treated at MD Anderson. With Colin’s tumor not needing immediate surgery, he and his family took the time to find the right hospital and doctor for his surgery and treatment. From the recommendations of family, friends, and research, Colin chose to seek treatment in Houston at MD Anderson.

Brains for the Cure maintains a close relationship with providers at many of the country’s best brain tumor centers. Explore these sites on our “Find a Doctor” page. Many of these sites are National Cancer Institute designated research cancer centers, and members of the Brain Tumor Trials Collaborative.

Advocacy for the Brain Tumor Community in Ohio

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When someone is diagnosed with a brain tumor, they can feel distant or alone from family, friends, and others as they fight this disease. Head for the Cure and Brains for the Cure hope to combat this feeling by being an outlet for support, providing a sense of community and hope, and a helping hand as a resource throughout the journey. As a way to support these missions, Head for the Cure, along with the larger brain tumor community, observe the month of May as Brain Tumor Awareness Month, however it is not officially designated as such across the country. Some cities and states have approved legislation that officially recognizes Brain Tumor Awareness Month, and others are beginning to follow suit.

Ohio State Representative Jeff Crossman has first-hand experience with this terrible disease.  His grandfather was diagnosed with a glioblastoma in 1986. Then 30 years later, his mother Rose was also diagnosed with the exact same brain cancer.  Rep. Crossman reflected, “In that 30-year span, we were astounded to learn that her prognosis was not much better in 2016 than if she was diagnosed in 1986.”

With an estimated 80,000 people newly diagnosed in 2019 alone, the average survival rate of 14-16 months for glioblastoma patients, and only 4 FDA approved drugs and 1 device for all 120 different types of brain tumors, Rep. Crossman turned his personal grief into action in honor of his mother, grandfather, and the thousands this affects every year. He knew the progress to find true comprehensive treatment could not be made possible if we didn’t have a true, dedicated awareness campaign surrounding brain tumors. 

Rep. Crossman sponsored the House Bill 230 proposing May as Brain Cancer Awareness Month in the state of Ohio. After passing the Health Committee, Rep. Crossman contacted several advocacy groups and constituents to provide written testimony to encourage a vote on the floor. A hearing was held on November 5th with a few representatives speaking to their own experiences. One of those advocates was Head for the Cure Ambassador, Sam Mierzejewski.

“A brain cancer awareness month is important because there simply aren’t many brain cancer patients who survive long enough to advocate for themselves,” Mierzejewski testified.

On December 12th, Rep. Crossman shared his story with the Ohio House of Representatives as he spoke about the proposed H.B. No. 230. In addition, Representative Scott Lipps, and the Ohio House Health Committee supported the bill and urged the House to vote yes on this bill. Representative Kyle Koehler also spoke to the support of the bill, specifically in honor of one of his constituents who passed away on August 25th from brain cancer, eerily the same day Senators John McCain and Ted Kennedy passed away after their fight with a glioblastoma.

With 87 affirmative votes and no negative votes, the proposed bill passed the House and is moving on to the Senate.

“Head for the Cure was honored to help connect the Ohio brain tumor community to Rep. Crossman to partner in our same missions in building awareness for this terrible disease,” commented Jenna Heilman, Executive Director. “We need to continue efforts to pass this state by state to truly combat this disease.”

If you would like to join the fight in helping make May officially Brain Tumor Awareness Month across the country, please contact Head for the Cure.

View the full testimony here

Tumor Microenvironment: How brain tumors grow and elude treatment

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Brain tumors cannot sustain themselves on their own. They need blood supply, nutrients, and waste removal, just like any other tissue in a body. So around of a brain tumor, or any other malignant tumor, there is a border zone that oncologists call the tumor microenvironment where the tumor grows and interacts with the body. Scientists study the tumor microenvironment to learn how brain tumors seize resources from healthy bodies to fuel their growth, elude the immune system, and regrow after surgeries or treatments. 

Tumors typically induce the body to create more blood vessels as they grow. This process is called angiogenesis, which comes from Greek words for container, angos, and for origin, genesis. Because tumors grow unchecked, they consume a lot of oxygen and nutrition. On their own they will outgrow their pre-existing blood supply. So they release chemicals that tell the body to create new blood vessels, and in this way tumors begin to make a microenvironment that is more suitable to tumor growth at the expense of the rest of the body. 

A map of the different kinds of cells thriving in the tumor microenvironment.

A promising area of research in cancer treatment is targeting treatments at angiogenesis rather than directly at tumors themselves. This strategy aims to starve tumors of the nutrients they need to grow. One benefit of this approach is that tumors tend to mutate quickly and develop drug resistance over the course of treatment, whereas the cells that make up tumor blood vessels behave more predictably in response to drugs. 

A second trait of of the tumor microenvironment is a group of cells called tumor-associated macrophages(TAMs) that hijack healthy body functions. These cells are originally a part of the immune system but they seem to get co-opted by tumors for more dubious purposes. They are present in large numbers in the tumor microenvironment and rather than helping fight tumor growth, instead seem to contribute to it. They send out signals to promote angiogenesis and block anti-tumor activity by the immune system. Some treatments seek to reprogram TAMs so they take on a cancer-fighting aspect. 

A third defining feature of the tumor microenvironment is oxygen-deprivation, also known as hypoxia, and tissues that prefer oxygen-poor environments (unlike most healthy tissue). Brain tumors contain a number of proteins that thrive without oxygen, and the inner cores of brain tumors exhibit a greater degree of hypoxia than their outer regions. However, a researcher team at the National University of Taiwan found that aggressive brain tumors show more signs of hypoxia at the edge than other cancers do. In any case, these oxygen-deprived regions are harder to deliver effective doses of chemo therapy and radiation, and because of this, treatment strategies may need to take this into account in order to prevent recurrences.