It was a chance meeting in a coffee shop that first brought Ken Connell and David Wilson together. Ken, a prostate cancer survivor, discovered that David was battling lymphoma. They talked openly about their experiences. It was the day their cancer support group was born.
Ken and David now lead two cancer support groups in Ballina and Byron Bay. David explains;
“Cancer has a major impact on a person’s life. It can affect everything from sleep and appetite to relationships with your family. While many support groups focus on medical issues, we wanted to create a community where people feel comfortable discussing the emotional effects of cancer without judgment.”
Along the way, both Ken and David have discovered the importance of health literacy, to which pathology is integral.
David was diagnosed with Waldenström’s Macroglobulinaemia (WM), a rare, slow growing form of non-Hodgkin lymphoma, a blood cancer affecting the immune system. There is currently no cure.
“After being diagnosed with cancer, my haematologist recommended a watch and wait approach. A combination of blood tests and bone marrow biopsies enabled him to monitor my blood over time and choose a milder form of chemotherapy tailored to my needs. Learning to understand my test results has helped me to keep an eye on my progress ever since.”
David is now participating in an international trial, comparing a new experimental drug, BGB-3111 against Ibrutinib, a drug already used to treat forms of lymphoma including WM, to see if it could be a more effective therapy.
From David’s point of view, education is a crucial tool for battling cancer. “It is critical that patients learn about their illness and treatment options, whether that’s through health care organisations or at their local clinic. Education is so important and those who remain uninformed are missing out on opportunities to improve their health.”
Ken is also a passionate advocate for patient education. Being diagnosed with prostate cancer has motivated him to embrace a holistic approach to health. “The cancer diagnosis was a wake-up call to change my lifestyle. With the help of my doctor, I’ve learnt to harness the benefits of exercise, sleep and nutrition to achieve the healthiest body possible.”
Although Ken has made a full recovery, he still relies on pathology tests to monitor his health. “While pathology tests were instrumental in my diagnosis, they’ve also played an important role in maintaining my health. I still have regular PSA tests as a preventative measure. I’m very fortunate to have been given a second chance and I’m healthier now than ever before.”
Improving your own health literacy
The internet has led to an abundance of easily accessible health information. And whilst this can be great if you’re looking for extra support, it is increasingly difficult to know which sources to trust. A couple of questions you should ask yourself are:
- What is the source? Government-funded websites, industry bodies and peak national healthcare charities are good places to start. Always read the ‘About Us’ page and be aware of potential biases. Are they a private company pushing a product, for example?
- Is the information up to date and backed up with scientific evidence? The best websites will reference reputable sources such as scientific journals.
When it comes to pathology, Lab Tests Online (www.labtestsonline.org.au) is one platform where patients can learn more about their illness and the relevant diagnostic tests. Lab Tests Online is run by the Australian Association of Clinical Biochemists, is government funded and provides reliable, accurate information, free from commercial bias. All of the information is written by practising pathologists and scientists and goes through a strict editorial board before being published.
Crucially the information is also Australia focused. When searching the internet it’s easy to end up down a rabbit hole only to discover that the information is not relevant in your location. Best practice guidelines, available tests and treatments can vary between countries, but at labtestsonline.org.au you’ll find information relevant to Australia.
And if you’re ever unsure about where to find the best information or you need additional support, remember your health professionals are there for you. Both Ken and David credit their doctors with supporting them to understand their own health. General Practitioners, nurses, specialists and pharmacists would much rather you asked them than rely on Doctor Google!