For Your Familia: Understanding Low Grade Glioma

U.S. Army soldier Tony Rentas, a native of Puerto Rico who dreamed of serving in the military all his life, had a seizure while on a mission in Kosovo.

Tony was diagnosed with a low grade glioma, a rare type of brain tumor.

He had no idea what a low grade glioma was. So, he started Googling. He found little that helped him understand this diagnosis and what it meant for him and his familia, and even less was available in Spanish.

That is why Tony is sharing his story and participating in the International Low Grade Glioma Registry, which hopes to learn more about the best ways to treat these tumors across different groups of people, including members of the Hispanic/Latino community.

“One of the biggest things that I wanted to do is help people as much as I can,” Tony said.

To help all our familias, let’s learn about low grade glioma.

What Is a Low Grade Glioma?

A glioma is a brain tumor that forms when glial cells – the “support” cells for the brain and spinal cord – grow out of control. There are several different types of gliomas that can occur in adults, including astrocytomas, oligodendrogliomas, and glioblastomas.

Gliomas are divided into grades from 1 to 4 depending on how they grow, with grade 4 tumors being the most aggressive. Astrocytomas and oligodendrogliomas that are labeled grade 2 or 3 3 are often called “lower grade gliomas” or “low grade gliomas.” Low grade glioma tumors generally grow more slowly and have better survival rates than high grade gliomas, but other factors come into play as well, including whether or not a tumor has certain genetic characteristics or biomarkers.

There is not much known about how people get gliomas. A small number of people may have an inherited gene that causes the glioma but this is rare. There are also some cases that are associated with high levels of exposure to radiation but, again, these cases are rare.

Tony was diagnosed with a particular type of low grade glioma – a grade 2 astrocytoma. His tumor was located on the left side of his brain, in a place called the temporal lobe.

“I remember walking out of that [diagnosis] appointment, sitting in the car, just trying to process things. A couple of tears coming down,” he said.

What Are Common Symptoms of a Low Grade Glioma?

People with a low grade glioma may report the following symptoms, which tend to vary by the size of the tumor and where it is in the brain.

  • Seizures
  • Headaches
  • Personality changes
  • Difficulty walking
  • Imbalance
  • Physical weakness, especially on one side of the body
  • A restricted field of vision
  • Difficulty speaking

“Other symptoms may also be noted including persistent weakness or numbness in an arm or leg or changes related to thinking, learning, concentrating, problem-solving, and decision-making,” according to the LGG Registry.

For Tony, he experienced symptoms prior to being diagnosed with low grade glioma.

“I kept on having déjà vu, the moving back and forward [in time], the lip smacking, the smell. I was like, ‘Man, what is it?’ I just kept ignoring it and ignoring it, you know, like, losing the train of thought. That’s when all those temporal lobe seizures started happening,” Tony said. These symptoms are consistent with a type of seizure seen in persons with lesions in the temporal lobe.

How Is a Low Grade Glioma Treated?

People with a low grade glioma usually have a health care team including a neurosurgeon (a surgeon who operates on the brain), a neuro-oncologist (a doctor who uses medical treatment to treat brain tumors), a radiation oncologist (a doctor who uses radiation to treat brain tumors) and others who come up with a treatment plan with the patient and their family.

The recommended treatment can depend on the type of tumor, the location of the tumor in the brain, the tumor grade, its genetic markers, and other factors. Surgery is one of the most common forms of treatment for people with a low grade glioma. The health care team may run tests on a piece of the tumor to help determine what type of tumor it is and how to treat it.

“In instances in which the tumor is able to be removed [and the characteristics are favorable], surgery may be the only treatment needed [for the time being],” according to the LGG Registry.

Following surgery, radiation is also a treatment option if some of the tumor remains or if the tumor has characteristics that suggest it may be more likely to recur.

“Radiation therapy generally takes place over the course of a six-week time period and may be given along with chemotherapy,” according to the LGG Registry.

Chemotherapy may also be suggested to treat the remaining tumor depending upon the amount of tumor that is not able to be removed (residual tumor).

“There are several types of chemotherapy that may be used as well as several ways in which the treatment may be received, i.e. via a pill or an intravenous injection,” the LGG Registry states.

Other treatment options are developing, including “targeted therapy,” which means that the treatment targets a gene or marker found in the tumor. Recently, researchers reported that a new drug helps to delay time to next treatment in persons with a specific genetic mutation (called an IDH1/2 mutation).

Be aware of alternative treatments, some of which are not based on research or evidence and could hinder treatment or lead to poor outcomes.

It’s important to always discuss treatment options with a healthcare provider.

For Tony, he had surgery, radiation therapy, and chemotherapy.

“Like, alright, brain tumor. Let’s get it out, you know,” Tony recalls about his treatment plan.

What Does Survival Look Like for People with a Low Grade Glioma?

Survival rates for people with a low grade glioma depend on the tumor type, location, and grade, but many people with this type of tumor do well for decades.

Unfortunately, in many cases, low grade gliomas tend to come back after initial surgery and treatment. This is known as recurrent low grade glioma. With low grade gliomas, it can be many years before someone experiences a recurrence.

Regular MRI scans are recommended following diagnosis and treatment to monitor for a potential recurrence. This helps ensure any new tumor growth can be treated again quickly.

Tony still gets regular MRIs and takes medication to help prevent seizures.

“At first it was like, every two months, then it was every three months,” Tony said. “Now, since moving to Florida, it was three months, but now I’m at every six months.”

How Is the Quality of Life for People with a Low Grade Glioma?

Although people with LGG are often relatively young and appear healthy, in some instances people have difficulties with day-to-day tasks, including driving, working and caring for family. In an LGG Registry study, participants reported experiencing:

  • Not being able to drive (34% of people)
  • Difficulty remembering new facts (64% of people)
  • Trouble with thinking or with getting words out (60% of people)

“Our findings highlight the unique challenges faced by people with [low grade glioma] and the need to better acknowledge and manage symptoms,” according to the Registry.

Health care organizations may have resources to help address quality of life challenges for people with a glioma. For instance, there can be rehabilitation or palliative care services available, often paid for by insurance or Medicaid.

People with a low grade glioma are sometimes not able to work, either short term or long term, and need to go on disability.

The Low Grade Glioma Registry has a live, public webinar about navigating disability benefits, as well as a live, public webinar answering questions about returning to work after glioma. Both webinars can be viewed on the Registry’s YouTube channel.

For Tony, given his medical issues, he decided to retire from the military.

“Having been in service for 12 years, 6 months, 18 days of active duty … it took a doctor, one of the lieutenant colonels that was treating me. He grabbed me by the hand one day and he’s like, ‘Listen, you’ve done your time, you’ve done your service. Now it’s our turn to take care of you,’” Tony said.

Latinos and Low Grade Gliomas

While early cancer treatment in general can aid in better health outcomes, Latinos often experience delays in medical diagnoses due to a lack of insurance. This can lead to a delay in visiting a primary care physician who can assess symptoms.

Historically, Latinos are also underrepresented in cancer research, which makes it hard for researchers to develop new treatments for this group. It is important for Latinos to be represented in cancer research, since different racial or ethnic groups may have different tumor characteristics and thus require different treatment plans.

“Participating in cancer registries and clinical trials can help us care for and fight for our familia and our community,” said Dr. Amelie G. Ramirez, leader of Salud America! at the Institute for Health Promotion Research at UT Health San Antonio.

Tony, who is from Puerto Rico, wants to help his fellow Latinos.

He partners as a community liaison with the LGG Registry to promote diverse participation, including the registry’s Spanish-language information webinar and a recent Spanish-language interview on Radio Amor.

He also shares his experience with other survivors.

“Just being able to share what I’m going through, give them a couple of ideas, and trying to spread the word as much as I can, to motivate folks to be part of those groups,” he said.

What Is the Low Grade Glioma Registry?

The International Low Grade Glioma Registry is a partnership between researchers, clinicians, patients, and care partners working together to focus on helping people initially diagnosed with low grade glioma brain tumors.

The registry, led by Dr. Elizabeth B. Claus of the Yale School of Public Health, has these goals:

  1. Discover why some people develop glioma while other people do not.
  2. Examine whether variations in inherited and tumor genes are associated with glioma and with response to treatment.
  3. Study how lifestyle factors such as diet, activity level, and occupation may be related with glioma risk and outcomes.

Over 700 people have enrolled in the Registry, creating a community of individuals interested in low grade glioma research and facilitating exploration of research questions that are important to people facing these tumors.

“Through the Low Grade Glioma Registry, we hope to learn more about the effects treatments have on the daily life of patients and care partners,” the Registry states.

You can join the registry if you:

  • Have ever been diagnosed with a grade 2 or 3 glioma
  • Are currently between ages 21-79, regardless of the age that you were diagnosed with a low grade glioma (grade 2 or 3)
  • If you have had two or more surgeries for your glioma, you are also eligible to enroll in an additional study within the registry called OPTIMUM
  • Enrollment is available in English and Spanish, for people in any country

Tony is a participant in the Registry.

“They’re taking this amazing, amazing initiative, where they’re trying to learn as much as they can about low grade glioma,” he said.

Join the registry!

How Can You Join the Low Grade Glioma Registry?

Participating in the registry can help your familia and your community.

There is no cost to participate.

Participants must complete an online study consent form and questionnaire in English or Spanish. Immigration status is not part of the registry. Confidentiality and privacy are maintained.

Participants are also asked to provide a saliva or blood sample that will permit the research team to look at changes in DNA. In some cases, participants will be asked to give permission for their health provider to share tissue specimens and MRI scans.

Tony recommends the Registry to anyone with low grade glioma.

“Here I am today, thanks to them, that are trying to find out how can we improve the quality of life of folks diagnosed with a low grade glioma,” Tony said.

“Participating in research can help so many of us in the future.”

Join the registry in english!

Join the registry! in Spanish!

Editor’s Note: This article is part of a partnership between Salud America! at UT Health San Antonio and the International Low Grade Glioma Registry to raise awareness of brain tumors, real people with brain tumors, quality of life, and caregiving as part of Brain Tumor Awareness Month in May. This work is supported by a grant to Yale University by the National Cancer Institute (1 U2C CA252979-01A1). Its contents are the authors’ sole responsibility and do not necessarily represent official NIH views.

The post For Your Familia: Understanding Low Grade Glioma appeared first on Salud America.

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