Coping With a Brain Tumor Diagnosis
- A father of two was diagnosed with a glioblastoma brain tumor, which is an aggressive form of brain cancer, after experiencing a series of intense headaches, a known symptom of a brain tumor. He’s since undergone brain cancer surgery and is currently receiving chemotherapy and radiation for treatment.
- The goal of surgery is to remove as much of the tumor as possible while preserving normal brain function. However, some tumors are located in delicate areas, like the brainstem, where removing the whole tumor entirely might not be safe for the patient.
- Surgery is just one step. Additional treatments like chemotherapy or radiation are often needed after surgery. These treatments help get additional tumor tissue left behind after surgery.
- 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.
- Even if much of the brain tumor tissue is removed through treatment, the chance of recurrence will remain for patients, meaning the cancer can return. To help with this, maintenance therapy treatment may be prescribed, such as Temozolomide, which patients can take after surgery and radiation therapy.
A 49-year-old father of two with a love of surfing is putting all his hopes in a clinical trial that will hopefully give him many more years with his family after a glioblastoma brain tumor upended his life this summer.
“If people are having headaches, go and get yourself checked,” Kelly Smith told U.K. news outlet The Daily Mail.
Read MoreGlioblastoma (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
Smith says his brain cancer journey began after experiencing a succession of headaches this past August. After seeing a doctor, an MRI revealed he had a lesion on his brain. Additional tests found a brain tumor the size of a mandarin. Smith has since undergone brain surgery followed by radiation and chemotherapy for treatment.
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.
Smith and his family have since launched a GoFundMe to help raise money for his treatments. Smith is also exploring clinical trials that may offer another treatment path.
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
Helping Patients Better Understand Brain Cancer
Treatment Options for Gliomas
Smith is living with a side effect of brain cancer surgery where he experiences impaired vision occasionally and suffers from memory loss.
“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 Provides 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.
Questions for Your Doctor
If you have been diagnosed with glioblastoma, here are some questions you may consider asking your doctor:
- What stage is my brain cancer?
- What are the treatment options for my brain cancer?
- What are the risks and benefits of the recommended treatment?
- What are the side effects of the recommended treatment?
- How long will it take to recover from treatment, and will I be able to return to work and normal activities?
- What’s the likelihood that insurance will cover the recommended treatment
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