Dealing With Brain Cancer & The Shock of Diagnosis
- Antiques Roadshow star Theo Burrell is recalling the moment she first learned of her glioblastoma (GBM) brain cancer diagnosis last June. Burrell, whose son was only 11 months old at the time, was fortunately able to have 90% of the tumor removed, beginning six months of radiation followed by six months of chemotherapy in an oral pill form, and has the remaining tumor monitored with frequent scans.
- Despite the severity of her grade 4 prognosis, Burrell, who just celebrated her son’s third birthday with her husband, refuses to look at her life with a time stamp, choosing to live day by day.
- GBM is a hugely challenging diagnosis, with some clinical trials going on and some innovation to bring options for patients.
- One advance that has shown to extend life for GBM patients is a device worn as a cap called Optune.
In an interview with the MailOnline, Burrell, 37, detailed how she finds hope throughout the challenging experience.Read More
When the “headaches and exhaustion” had started, the general symptoms were dismissed as the result of being a new mom while juggling work. Burrell was advised to rest and relax as much as possible. But over the course of the next six months, the symptoms worsened. Suddenly, Burrell was suffering pins and needles in her left arm, visual disturbances and overall sickness, along with pressure in her head.
“I really hope this isn’t a brain tumor,” she had told her husband. Unfortunately, she was right.
Burrell, then 35, had gone back to her doctor who ordered a CT scan, which revealed the 5 cm tumor.
“As the doctor said those words, it felt like I was having an out-of-body experience.”
A Difficult Diagnosis
As the whirlwind of appointments followed, a neurosurgeon explained the next day that it was a glioblastoma tumor, which is considered a central nervous system (CNS) tumor that “grows and spreads very quickly,” according to the National Cancer Institute.
“He said, ‘It’s cancer and it’s really aggressive. This is the reality of the situation. We’ll take out as much as we can but it will come back. It’s incurable and the average life expectancy is 12-18 months.’ ”
Thankfully, the doctors were able to remove 90% of the tumor. Burrell then underwent six weeks of radiation and six months of chemotherapy taken in the form of a daily pill called temozolomide (Temodar).
“I don’t want to know how long I’ve got,” Burrell said. “I know myself well enough and told the doctor, ‘If you give me a figure, I will focus on that for what’s left of my life and it won’t do me any good.’ He said, ‘OK, fair enough, I just want you to understand the seriousness of this situation’ and I told him I absolutely got it.”
Continued Burrell, “The average life expectancy for my type of tumor is 12 to 18 months, so, by those reckonings, I would only have a couple of weeks left. But, according to the scans, things are looking OK for me at the moment.”
Living in the Present
Fully appreciating each and every milestone, Burrell and her husband just celebrated Jonah’s third birthday last month. Her son, so far, is unaware of what his mom has been going through, and Burrell doesn’t see a reason to tell him right now as it’s too complicated for him to understand.
As she continues to remain positive despite the severity of her prognosis, Burrell realizes she has been given the gift of a new mindset, describing her situation as “liberating,” as she is more focused on living life “day to day.”
“While I obviously wish I didn’t have a terminal illness, it’s liberating in a lot of ways,” Burrell shared. “I just don’t worry about the same small things any more and now life day to day, appreciating what’s happening, instead of always planning and looking to the future.”
What Are the Treatment Options for Glioblastoma?
Glioblastoma is one of the most challenging cancers to treat. The Food and Drug Administration’s (FDA) approval of the drug temozolomide (Temodar) has been a major breakthrough in helping patients with this aggressive disease. Though the prognosis for GBM patients is still very challenging.
Temozolomide is a chemotherapy drug patients can take after surgery and radiation. During radiation treatment, doctors use high-energy beams such as X-rays to target and kill cancer cells.
Dr. Daniel Wahl, professor of radiation and oncology at the University of Michigan, says that the oral drug works by “slowing down tumor growth.”
“Patients with GBM have effective treatment options; there are four of them: surgery, radiation, chemotherapy, and tumor targeting fields. These are electric fields that we can use to treat these cancers,” Dr. Wahl said.
Other FDA-approved drugs that can help treat glioblastoma include lomustine (Gleostine), intravenous carmustine (Bicnu), carmustine wafer implants, and Avastin (Bevacizumab).
“Outcomes for these patients are still suboptimal,” Dr. Wahl continued. “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.”
The hope with continued research is that little by little, the prognoses will improve for people with glioblastoma. One highlighted area is tumor-treating fields, which can help extend a patient’s life by an average of two years.
The tumor-treating delivery device Optune, a wearable device for glioblastoma patients 22 and older, was first launched in 2011 and approved by the FDA in 2015.
“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.
Questions for Your Doctor
If you have been diagnosed with glioblastoma, here are some questions you may consider asking your doctor:
- What are the treatment options for my brain cancer?
- Am I a good candidate for temozolomide?
- Am I a good candidate for Optune?
- 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?