Cayman now has a new foundation to offer support to people suffering from brain tumors and aneurisms.
The Brain Tumour Foundation, which launched on Saturday, Feb. 15, will cater to people the group describes as “The Forgotten” – patients and survivors, as well as their families and friends, who are often overlooked in terms of public awareness and support groups.
Explaining the reason behind the term “The Forgotten,” founding member Brenda J. Archer said that as a brain tumor survivor herself, she knows that what many survivors have in common is that they feel they are “forgotten by society or the community, and that’s what we want to change. We want to be remembered and we want to be helped.”
The foundation plans to host educational seminars to raise awareness and to offer support groups where survivors and their families can receive emotional and psychological support.
Around 100 supporters attended the launch at the Westin Grand Cayman hotel. The keynote speaker, Professor Ivor W. Crandon, who is a neurosurgeon at the University Hospital of the West Indies, recently joined the foundation as an honorary board member after volunteering to serve as the organization’s consulting neurosurgeon.
Ms. Archer gave some insight into the organization’s plans.
“The foundation extends their sincere and extreme gratitude to Dr. Crandon for coming on board as our neurosurgeon consultant, and Cayman will be seeing more of him and other medical personnel in the future.
“We are going to be hosting some seminars as well, where medical personnel will be brought in and hopefully local neurosurgeons will join them in educating the public about this illness,” she said.
Ms. Archer underwent surgery for her tumor seven years ago.
“I went to the hospital on Christmas morning of 2006 because on Christmas Eve I was feeling ill, and then on Christmas morning I ended up in the emergency room for partial paralysis, and then I was misdiagnosed, and eventually, after gathering information for myself, I realized I had a brain tumor.
“After that, I spoke to doctors [and] it was soon confirmed I had a brain tumor. From there, I sought further treatment and a few months later I went for surgery in 2007,” she recalled.
Looking back on her experience, she said, “I had been displaying symptoms for over a year. Forgetfulness, mood swings, nausea, numbness, bulging of the eye, and a lot of confusion, very lethargic to the extreme you could ever imagine, short-term memory loss, and I was very emotional.”
Early detection is key
Seven members serve on the foundation’s board, and its main objectives include raising awareness of brain tumors, early detection, and early intervention.
Dr. Lovell Stanley, neurosurgeon at TrinCay Medical Centre, said early detection is extremely important. Dr. Stanley said he typically sees around 10-15 patients with brain tumors per year and noted that many of them failed to seek treatment during early stages.
“Early detection is the most important thing. When it’s early and small, you have a better chance at treating as it is. A lot of patients I’ve seen have been more late than early here, so that would be a big benefit of the Brain Tumor Foundation, to make people more aware,” he said.
Dr. Stanley advised that all types tumors can be dangerous – even non-malignant ones.
“Most brain tumors are non-cancerous, they are usually benign. If a tumor is in the skull, even a benign tumor needs to be treated because there is no extra room for a tumor to grow when it’s in the skull, so the tumors are dangerous,” he said.
Common symptoms related to the illness are “frequent headaches associated with nausea or vomiting, vision changes blurred or double, weakness of one side of the body or the other. Depending on the tumor, there are sometimes hormone changes,” said Dr. Stanley.
He urged anyone who notices any of these symptoms to “go and see your GP who will then refer you to a neurologist or neurosurgeon directly.”
After visiting your general practitioner, Dr. Stanley said, the next steps would be examination, followed by an MRI. “The MRI can tell the doctor what type of tumor it is. The next step would be to diagnose and treat the tumor. They can be treated differently by surgery, radiation, and chemotherapy.”
Patients may not have to travel far for surgery, according to Dr. Stanley, who said many of the local brain tumor cases have been treated on island. He added that after surgery, patients are required to visit a neurologist for follow-up sessions as the disease can come back.
Ms. Archer urges families affected by the illness to come forward.
“We are appealing to anyone who has been affected by a brain tumor or an aneurism to contact our foundation. I’m in communication with the Health Services Authority and Ministry of Health and we will be working together to try and help each other in gathering the information and visiting patients,” she said.
The foundation is working to locate people who have been impacted by the disease. So far, it has identified about 60 people who are either survivors, who currently are being treated, or who have lost their battle with the disease.
During the search for potential patients, Ms. Archer found people living with the disease who had not sought medical treatment for various reasons. “People are not getting treatment because of financial reasons, and also because they are not capable of getting to a doctor,” she said.
She explained that the longer one lives with an untreated brain tumor, the worse symptoms get, “including paralysis, deafness, and lack of coherency, which means they can’t even remember if they have an appointment.”
Support group and therapy
Ms. Archer said that there is currently a lack of support for people suffering from brain tumors. To fill this gap, the foundation is working with the Rev. Yvette Noble-Bloomfield at the Department of Counseling Services to offer group therapy and individual therapy sessions for patients and their families.
“The support group is geared towards the individual affected and their families, friends, loved ones, and colleagues for the support group therapy and counseling, as well as individual therapy.”
Ms. Archer said the Rev. Noble-Bloomfield will be playing a major role in the group therapy and counseling.
“That’s our first short-term goal, and this is going to start as soon as we have the resources in place,” said Ms. Archer.
“These are the people who need … to be counseled to cope with what they are going through. That’s why counseling and therapy is an integral part of this whole thing,” she added.
For further information, call 916-1811 or email [email protected]