Helping Patients Manage the Noise When Facing a Cancer Diagnosis
For kidney cancer patients, the future is bright as stakeholders work together to help build support options for each patient’s cancer journey.
Newly diagnosed patients will have the worst-case scenario in their heads, and that’s not often the case.
Gordon Lewis was diagnosed with kidney cancer by fluke. While in the hospital for a fractured pelvis, doctors noticed something unusual during his CT scan. Days later, Lewis was given his diagnosis: renal cell carcinoma — the most common type of kidney cancer.
Like Lewis, most patients diagnosed with kidney cancer experience their diagnosis incidentally while being treated or tested for something else. The disease is particularly elusive, often not exhibiting signs and symptoms until a substantial tumour has already developed. Kidney cancer is the 10th most diagnosed cancer in Canada and this year, 8,000 will be diagnosed across the country. “There’s no demonstrated screening for kidney cancer, which adds to the complexity around diagnosis,” explains Dr. Aly-khan Lalani, Assistant Professor at Mcmaster University, specialist in genitourinary cancers, and co-host of the podcast The View on GU. While it’s most often diagnosed during other routine procedures — like an X-ray — some possible signs and symptoms of kidney cancer can include low back pain or a mass on one side, swelling of the ankles and legs, and hypertension.
Managing an overwhelming diagnosis
Kidney Cancer Canada is a national community of patients, caregivers, and medical professionals aiming to provide support and resources for those going through their own journey with the disease. “Newly diagnosed patients will have the worst-case scenario in their heads, and that’s not often the case,” says Christine Collins, Executive Director of Kidney Cancer Canada. “We’re here to help.” If detected in the early stages, the five-year survival rate for kidney cancer is high, but for the 30 per cent living with advanced or late-stage kidney cancer, it’s much lower. Education and awareness are key.
The organization supports patients and their caregivers as they tackle their individual kidney cancer journeys, arming them with the tools and resources they need to feel educated when making decisions regarding care. “Sometimes you just need to talk to someone who’s been there and gone through it,” says Collins, noting that while patients are key, caregivers are also an important part of a cancer journey and require customized support of their own.
From one-on-one patient support and treatment decision guides to webinars and a video knowledge library filmed with advice straight from kidney cancer specialists themselves, Kidney Cancer Canada knows the role that reliable, credible resources can have on easing the burden for kidney cancer patients and their loved ones.
Staying informed and staying positive
Lewis was 58 when he was diagnosed and credits the incredible advancements in kidney cancer care to not only helping him to survive with the disease, but thrive. “While kidney cancer isn’t curable, it’s definitely treatable,” he says, “and many of the current treatments are showing strong efficacy.” Five years after his diagnosis, Lewis’ recent CT scans have come back clear — his cancer has not progressed. While optimistic, Lewis notes that each cancer journey is difficult in its own way — both physically and mentally. “It’s important to stay positive — there are going to be dark times — but you have to focus on the good,” he says. “Your oncologist, doctor, and family become your biggest cheerleaders.”
Lewis relied heavily on the resources and supports available through Kidney Cancer Canada during his own cancer journey. “When you’re first diagnosed, everyone you speak with is suddenly an expert,” he says. “It can feel like there’s a lot of noise. You need information that’s relevant to you.” Through patient forums, chat functions, and webinars, Lewis was able to keep himself up to date on innovations relevant to the kidney cancer space, allowing for him to have open, two-way dialogue about his treatment with his medical team and to play a role in his own care path.
Playing a role in your treatment journey
Kidney Cancer Canada is just one organization working toward a brighter future for kidney cancer patients. Continued research, however, is critical to this vision, and as Collins notes, when it comes to treatment, what works for one patient may not work for another. “Kidney cancer is unique,” she says. “It can be quite a technique to find the right treatment.” Optimistically, however, Dr. Lalani notes, “We’ve seen remarkable advancements in understanding what drives kidney cancer.”
The treatment options for kidney cancer have evolved tremendously in recent years, but it will continue to take a village to further innovation in the field. “The number of people living with kidney cancer continues to rise, but the survival rate has
The number of people living with kidney cancer continues to rise, but the survival rate has dramatically improved thanks to advancements in care.
dramatically improved thanks to advancements in care,” explains Corinne Barr, Business Unit Head of Oncology at pharmaceutical company Ipsen Canada. This teamwork extends to those working on the frontlines within the medical field. “Over the last 20 years, there has been a network of Canadian health care providers singularly focused on understanding kidney cancer and optimizing care for patients. This unique collegial environment is helping raise the bar for Canadians diagnosed with the disease,” Dr. Lalani says.
While innovation is critical, it’s equally important for patients to have access to resources and support — like those offered through patient groups like Kidney Cancer Canada — to fully understand the options available to them, so they can make informed decisions when it comes to treatment. “When patients engage more with their treatment, they feel more empowered in their treatment journey overall,” says Barr.∎
To learn more about kidney cancer, your risk, and to access support and expertled resources available, visit kidneycancercanada.ca