Johannesburg - Tumours in the brain and nervous system are increasing, show the cancer registries of many Western countries.
Some specialists say rising statistics could be due to better diagnosis of conditions previously attributed to, say, strokes or dementia.
Others say that patients with cancer in other parts of the body are surviving longer due to better treatment, and that cancer cells are spreading to the brain or nervous system.
No one is saying there is an epidemic, and the prevalence of brain tumours in the general population is still low.
But, even taking into account better diagnosis and survivability of cancer patients, the extent of the rise is worrying, even for the experts, published reports say.
The prevalence of brain tumours in South Africa is not known, because in the National Cancer Registry of 2004 (the last one available), brain cancers are combined with cancers of the central nervous system.
At that time, it was estimated that the lifetime risk of developing a central nervous system tumour was one in 849 for men, and one in 1 611 for women.
However, according to oncologist Dr Andre Dreyer of the GVI Oncology group, “95 percent of nervous system tumours are in the brain”.
“Brain cancers are quite common, and they affect all communities, in all age groups all over the world,” he says.
In children, he adds, although the incidence of brain tumours is low, they are the second most common cancer after leukaemia.
More adults have brain tumours, and are more prone to it the older they get.
“In the young, the most common brain cancer is embryonal (it begins in foetal tissue), and in the adults, it is the glioblastoma (aggressively malignant tumours arising from the cells that make up the supportive tissue of the brain),” says Dreyer.
Brain tumours are graded from one to four, with grade one and two being benign or slow developing, and grades three and four more rapidly progressing, with grade four being the most aggressive.
The specialists who remove brain tumours are neurosurgeons, and over many years of clinical practice, Tshwane neurosurgeon Dr Edward Gurnell has seen an increase in malignant brain tumours in the patients referred to him.
“This applies to both primary brain tumours, those that originate within the brain, and secondary or metastatic tumours, which are tumours that have spread to the brain from elsewhere, such as the lung or breast,” he says.
“It’s important to note in the case of secondary brain tumours, however, that cancer patients are surviving longer with modern day chemotherapy treatment, and therefore a greater number of patients develop secondary brain deposits (of cancerous cells),” he adds.
The causes of brain tumours – benign or malignant – are mostly unknown, and despite a contentious Roman court finding recently that there is a “causal link” between cellphone use and brain tumours, and singer Sheryl Crow’s belief that her benign brain tumour was caused by excessive use of her cellphone, there is no scientific evidence to support this.
The symptoms of these tumours are also myriad, depending on where the tumour is located, and can mimic another malaise like a stroke.
The most common symptoms are headache, nausea, vomiting, epileptic seizures or neurological deficits, like partial paralysis of the face, says Gurnell.
Loss of hearing in one ear, or sight in one eye, is common if the tumour is located in or near the cranial nerves, or weakness in a limb might occur if it is in or near the primary motor cortex.
Cape Town neurosurgeon Dr Roger Melvill says the “insidious nature” of brain tumour symptoms means the correct diagnoses is often delayed, and a slow growing tumour like a meningeoma (forms on the brain’s surface membrane and not in the brain itself), can go undetected for years.
But whatever the nature of the tumour, once it is found the neurosurgeon has to weigh up whether it can be safely removed and what the risks are of causing more harm.
“The tumour may be in an area where the risk of loss of sight or speech ability, say, is too high. So the surgeon’s call might be to leave it,” he explains. Ideally, however, as much of the tumour as possible is removed.
Surgical removal is also the mainstay treatment of benign tumours, as they may be causing pressure inside the brain, disturbance of brain function (loss of vision, hearing or movement) or abnormal brain activity like epilepsy.
Dave Chambers, a Cape-based editor who was diagnosed with a table tennis ball-sized meningeoma in 2003, says his first symptom was an “seizure in my sleep”.
“I was having convulsions and biting my tongue,” he recalls.
His wife called an ambulance and a tumour was soon found in an MRI scan.
After it was successfully removed, Chambers went on epilepsy treatment for a year and must undergo an MRI scan every five years to check that the tumour hasn’t grown back.
In the case of tumours affecting brain function, neurosurgeons sometimes rely on a technique called “awake cortical mapping”, which allows the surgeon to “wake” the patient during the surgery to test, say, language function using delicate electrical stimulation.
“The brain doesn’t feel pain, so this is a very useful technique,” says Melvill.
For malignant tumours, radiotherapy – sometimes combined with chemotherapy – is the standard follow-up treatment after surgery, but the recovery rate depends entirely on the unique nature of the tumour and how rapidly it grows back.
“For malignant tumours, there is no cure, only control of tumour growth and delaying a recurrence of the tumour,” points out Gurnell.
The tumours with the poorest prognosis for survival are the glioblastomas, adds Melvill.
That said, many people survive and live a long life after being diagnosed with a brain tumour, thanks to advancements in medical science.
Many people who had benign tumours have been cured, their only reminder being the need for an MRI scan every few years.
Andrew Lanham, who had resigned himself to an early death more than once during the trauma he experienced, says: “It’s not necessarily a death sentence. In fact, surviving one makes you appreciate your life more.”
CASE HISTORY NO 1
The first sign that something was wrong with Sandi Slabber, 46, a lighting consultant and married mother-of-two in Cape Town, was the onset of “small epileptic-like fits”.
“They felt like panic attacks, and my left eye would veer off to the right,” she recalls. The fit wouldn’t last long and her eye would soon return to its normal position.
“I’d just had my baby girl, so I thought it might be a symptom of hormonal imbalance,” she says.
That was in March 2006. Three months later, after the fits kept recurring, Slabber was referred for an MRI (magnetic resonance imaging) scan, then booked immediately for surgery.
She had oligodendroglioma, a brain tumour that develops from the cells that produce the fatty covering of nerve cells in the cerebrum.
It was located on the right motor cortex, the area of the brain which controls muscle movement.
It was a low grade tumour (not aggressively malignant), but it was causing pressure on the brain and had to be removed so Slabber could reclaim her life.
By then, Slabber was unable to drive in case of a fit, and when she felt her eye twitching to the side, she’d cover her face with her hands until it had passed. “It was very distressing and disabling,” she says.
That August, Slabber underwent surgery, but a crescent-shaped sliver of the tumour was left behind, as to attempt to remove it all would probably have left her blind.
Unfortunately, in 2010, the tumour had grown back, and was more malignant this time. Again Slabber was operated on, and had a follow-up programme of radiation, which she says has stunted its growth.
For now that is. A six-monthly MRI scan has to ensure this remains the case, as if not, she’ll have to go back on radiation or chemotherapy treatment.
The fallout on Slabber’s family life was much more devastating than the procedures, however.
“After the first op I looked like conehead with all the bandages. I couldn’t hold my baby for the first six months of her life. My mother paid for a carer,” says Slabber.
Her marriage has since deteriorated to the point that she is filing for divorce.
But typical of many other cancer survivors, she is surprisingly upbeat. “I feel lucky, and I’m just grateful the tumour wasn’t highly cancerous,” she says.
CASE HISTORY NO 2
The first symptom felt by Andrew Lanham, 65, a Midrand mining writer, was his right cheek going numb and getting steadily worse over a year.
In his case, a tumour ran along his trigeminal nerve, the cranial nerve responsible for facial sensations.
After 14-hour surgery to attempt to remove the tumour, Lanham returned to consciousness to discover his face was not only numb on the right side, but he’d lost hearing in the right ear, a side effect his surgeon had warned him about.
“For the first three days afterwards I wasn’t sure if I was going to live or die,” he says. “I couldn’t move, and I had tubes coming out of the top of my head. It was painful and very frightening.”
So two years later, when Lanham learned that the tumour had grown back as a more malignant one, he was terrified.
By then the tumour had “eaten away a golfball-sized hole in my forehead and gone off in strands into the orbits of the eyes”.
Lanham found a new neurosurgeon for the second operation, who he says did a much finer job of removing the tumour, and also had a prosthetic forehead made for him.
Five months of chemotherapy followed and today, two years later, Lanham is still married and working, living an almost normal life.
“My face on the right is paralysed and I have to remember to blink my right eye otherwise it gets dry and red. And I have no hearing in the right ear.
“But I’m still functioning well. I just have to be careful to maintain a healthy diet and get enough sleep and, above all, avoid flu because I have no sinuses left, so my head just swells up,” he says.
BEEN DIAGNOSED? REACH OUT TO OTHERS
A diagnosis of a brain tumour can be devastating, not only for the sufferer, but also for their friends and relatives, says oncology social worker Linda Greeff, who co-founded the support group People Living with Cancer.
This is regardless of whether or not the financial cost of treating someone is borne by a medical aid, which ideally should be coupled with dread disease insurance cover.
“It is heartbreaking especially for parents of children with brain tumours, as sometimes the surgery leaves them without mobility, or they lose sight or hearing,” she says.
State patients and their families are especially vulnerable, as they don’t have the resources to undergo proper rehabilitation including counselling for family members.
“It can be very traumatic if a loved one is seriously affected, say, in their physical, personality or psycho-social behaviour,” says Greeff. “Professional counselling is important in these cases.”
Greeff advises people living with cancer, or those affected by it, to contact Cancer Buddies for free counselling and assistance.
Cancer Buddies carefully matches a newly diagnosed person with someone who has fought and survived the same type of cancer.
Cancer caregivers – spouses, parents, siblings, children and other family and friends – also receive one-on-one connections with other caregivers and survivors, says Greeff, as it’s crucial families get support..
For more info, visit www.cancerbuddies.org.za, or call 0800 033 337. - The Star
Other resources:
* Cancer Association of South Africa (www.cansa.org.za)
* Brain Tumour Foundation of South Africa blog: (braincatalogue.blogspot.com)