Lara Spencer's Mom's Brain Tumor Journey
- “Good Morning America” co-anchor Lara Spencer threw a party with her beloved mom Carolyn von Seelen’s caregivers and loved ones more than one year after completing her treatment in her battle against a brain tumor.
- Her mom underwent both therapy and radiation, five days a week for six weeks.
- Brain tumors account for 85-90% of all primary central nervous system (CNS) tumors, according to the American Society of Clinical Oncology (ASCO). General symptoms of a brain tumor may include headache, nausea, vomiting, blurred vision, balance problems, personality or behavior changes, seizures, drowsiness, or even coma.
- Assuming the role of a cancer caregiver when a spouse, parent, sibling, child, or friend is diagnosed with cancer comes with a unique set of responsibilities. The first thing to understand is that there is no shame is asking for help. This can be an overwhelming time for both patients and their caregivers, too.
Spencer, a 55-year-old mom of two, took to Instagram over the weekend to share some heartwarming photographs of her mom enjoying her time at the house gathering.
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Although Spencer hasn’t specified what type of cancer her mom was battling. It wasn’t until weeks later she revealed in a followup post that she shared what the disease was.
Not only did Spencer’s mom enjoy time at the party, she also went to her granddaughter Katharine Paige’s lacrosse game at Vanderbilt University.
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- Caregivers Can’t Provide Optimal Care for Their Loved Ones with Cancer If They Don’t Care for Themselves
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“Starting lineup. First time grandmother and aunties get to see 8 and her @vandylacrosse team in action. #katesfanclub,” Spencer wrote alongside a photo of her daughter’s cheer squad, including her mom.
Spencer also shared a photo of herself kneeling near her mom, while in the bleachers at the Vanderbilt Lacrosse game, and wrote, “Special cheering section for the @vandylacrosse game this week #mom #grandmotherandaunts.”
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Last February, Spencer shared a celebratory post, featured a photo of her standing next to her mom and doctors, writing, “I am so happy to share that my mom has just finished treatment for a brain tumor and she is doing GREAT.
“Six weeks. 5 days a week. Both chemo and radiation–and not surprising at all, if you know my mom, she is still smiling. My friend Susan gave her a pair of socks that say it all—‘you picked the wrong bit*#, cancer!’”
The New York Times best-selling author added,, “Thank you to the amazing and compassionate team at Florida Cancer Specialists in Sarasota starting with Dr. Scott Lunin, and endless thanks to Dr. John Boockvar and the Brain Tumor team at Lenox Hospital in New York for your groundbreaking trial to get chemo past the blood brain barrier.
“My mom is proof positive your work is a game changer. Mom-your spirituality and belief that anything is possible are a masterclass in how to live. You are a fierce and fabulous warrior and I can’t wait to celebrate with you!!!!!”
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Guidance for Caregivers
It’s important to understand that assuming the role of a caregiver when a spouse, parent, sibling, child, or friend is diagnosed with cancer or any other type of disease comes with a unique set of responsibilities.
The first thing to know is that there is no shame is asking for help. This can be an overwhelming time for both patients and their caregivers, too.
Julie Bulger gives some tips on how caregivers can care for themselves.
Through interviews with expert oncologists, social workers, patients advocates, and more, we’ve come up with a checklist of helpful steps cancer caregivers can take throughout the journey.
Cancer caregivers may:
- Attend doctor visits with the patient
- Help the patient take notes/ask questions
- Provide transportation to and from treatment
- Accompany the patient during treatment
- Help keep track of side effects
- Link up with a social worker/patient navigator
- Help with day-to-day activities
- Provide emotional support
“I encourage caregivers to come in to visits with my patients, because in that way, the caregiver is also listening to the recommendations — what should be done in between these visits, any changes in treatment plans, any toxicities [side effects] that we need to look out for, changes in dietary habits, exercise, etc.,” Dr. Jayanthi Lea, gynecologic oncologist at UT Southwestern Medical Center, previously told SurvivorNet. “The work is extremely hard.”
Dr. Jayanthi Lea, gynecologic oncologist at UT Southwestern Medical Center, shares some guidance for new cancer caregivers
Caregivers should be willing to share what they’ve learned while caring for their loved one day to day, letting the doctor know about any side effects or other problems that arise. They also need to be willing to take a backseat sometimes.
“Step back a little bit and let the patient speak for themselves. Let them express what they are feeling,” Dr. Lea added to SurvivorNet. “That is so important for the patient’s overall quality of life and wellbeing.”
Understanding Brain Tumors
It’s unclear what type of brain tumor Lara Spencer’s mom battled, but it’s helpful to understand that 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.
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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.
WATCH: Clinical Trials can be Life-Saving
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.
Glioblastoma Risk Factors and Symptoms
Glioblastoma risk factors can include:
- Prior radiation exposure
- Gender: men are more likely to get glioblastoma than women
- Age: people 50 years or older
- Certain genetic syndromes, including neurofibromatosis, tuberous sclerosis, von Hippel-Lindau disease
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
Expert Caregiving Tips
- Caregiving Isn’t Easy; Recognize That You May Need Help
- Caregiving: An Opportunity for Healing
- Mental Health and Cancer — The Fight, Flight or Freeze Response
- ‘A Sacred and Blessed Calling’ – Managing Life As a Caregiver
- Caregivers Can’t Provide Optimal Care for Their Loved Ones with Cancer If They Don’t Care for Themselves
- How to Be a Better Caregiver for Your Loved One
- Where Cancer Caregivers Can Get Help With Finances: Coping With the Bills
- You Are Not Alone — 6 Inspiring Cancer Memoirs to Help Survivors and Caregivers Cope with Their Journeys
Treatment Options for Gliomas
“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?” Dr. Henry Friedman, Deputy Director of the Preston Robert Tisch Brain Tumor Center at Duke, tells SurvivorNet.
WATCH: Glioma Treatment Options
The main treatment options are:
- Observation—Some benign, small, and without symptoms of gliomas or tumors located in inoperable locations can be recommended for observation.
- 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.
After surgery, pathologists examine the tumor tissue to understand its features and molecular makeup. This added step helps doctors outline an appropriate treatment.
“We go through a very elaborate process of diagnostics, which includes looking at it under the microscope through our pathology team,” Dr. Friedman explained to SurvivorNet.
WATCH: The Role of Surgery in Treating Gliomas
Radiation and chemotherapy are often needed after surgery because removing the tumor completely is usually not possible due to the tumor’s ability to spread into surrounding brain tissue.
- Radiation therapy uses high–energy X–rays to target and kill tumor cells. It 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.
The Food and Drug Administration (FDA) has approved some drug treatments, including temozolomide (Temodar), to help patients with this aggressive disease. Temozolomide is a chemotherapy drug patients can take after surgery and radiation therapy.
- Targeted therapy and immunotherapy are newer treatments designed to target specific genetic mutations in the tumor or to stimulate the immune system to fight the cancer. Their role in the treatment of gliomas is continuing to evolve.
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.
The FDA approved Vorasidenib, an IDH inhibitor. It works by blocking the mutated enzyme, slowing tumor growth, and extending the time before disease progression. IDH mutant gliomas tend to grow more slowly and have a better prognosis than IDH wild-type gliomas.
Dr. Alexandra Miller, Director of the Neuro-Oncology Division at NYU Langone Health, tells SurvivorNet that Vorasidenib is a “huge breakthrough for people with IDH mutant tumors.”
WATCH: Vorasidenib for IDH Mutant Gliomas
“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 a few,” Dr. Daniel Wahl, professor of radiation and oncology at the University of Michigan, tells SurvivorNet.
Ongoing Research Offers Hope
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 Survivor Net.
TTFields use low-intensity electric fields to disrupt the cell division process, making it harder for cancerous cells to multiply.
WATCH: Using electric sources to improve glioblastoma treatment.
Despite Optune’s hope, not all cancer experts agree with its approach, including Dr. Friedman.
“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 said.
Contributing: SurvivorNet Staff
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