First-ever research demonstrates a disconnect when it comes to kidney cancer survivorship planning

Kidney Cancer Canada calls for survivorship care plans to address the unique needs of kidney cancer patients

TORONTO, Feb. 29, 2012 /CNW/ - According to a recent survey commissioned by Kidney Cancer Canada (KCC), there is a disconnect between what information urologists indicate they are communicating to kidney cancer patients following surgery, and what patients and their caregivers say they remember receiving.  With National Kidney Month kicking off in March, Kidney Cancer Canada is releasing its top 10 tips to help improve patient survivorship.

"When patients are first diagnosed with kidney cancer the word "cancer" takes a significant emotional toll, making this a difficult time for them to absorb much information, let alone remember that information long-term," says Catherine Madden, Executive Director, Kidney Cancer Canada.  "While many urologists provide patients with information about their cancer, our data demonstrates it is crucial kidney cancer patients receive survivorship information in writing following their kidney cancer surgery to help them understand the importance of the long-term surveillance and care required."

The national survey is the first-ever Canadian research on early-stage kidney cancer survivorship and was conducted with kidney cancer patients diagnosed in stages one through three, caregivers of kidney cancer patients, and urologists.  This study comes on the heels of a recent report by the Canadian Cancer Research Alliance demonstrating there has been no investment in survivorship projects related to kidney cancer in Canada.i

"We commissioned this survey to get a better grasp of what urologists are delivering and what patients remember hearing when it comes to survivorship so we can shed light on what is needed for improved survivorship outcomes," adds Madden.

About Kidney Cancer
In 2011, approximately 5,100 Canadians will have been diagnosed with kidney cancer and 1,650 will have died from the disease.ii Approximately 75 per cent of new kidney cancer patients in Canada are diagnosed in one of the first three (of four) stages of the disease.  For them, the first treatment step is to see a urologist to often have part of or the entire affected kidney removed.  For some of these patients their cancer will recur, progressing to stage four metastatic kidney cancer - the most serious form. Others will face separate health challenges as a result of their kidney cancer surgery (e.g., increased risk of chronic kidney disease and/or hypertension) - challenges that can be serious on their own, or can further complicate metastatic kidney cancer treatment in later years.

Survey Findings
Urologists said they commonly inform their kidney cancer patients of possible health outcomes as a result of the surgery, such as: risk of kidney cancer recurrence (93 per cent of urologists say they share this), increased risk of chronic kidney disease (83 per cent), and increased risk of hypertension (73 per cent). However, 46 per cent of patients/caregivers said they did not get anything like this.  Of the patients/caregivers who did receive information regarding possible health outcomes, over two-thirds (68 per cent) did not get anything in a written format.

In fact, when asked if following surgery the urologist said something general like, "We got all the cancer.  You can now get on with your life," 73 per cent of kidney cancer patients/caregivers agreed.  And, 62 per cent of patients/caregivers said they wished the patient's urologist had given them more information following their surgery.

The need for a survivorship plan is further supported by many patients/caregivers admitting to the patient dealing with emotional (71 per cent), physical (56 per cent), and psychological (52 per cent) impacts as a result of their experience with kidney cancer.  And, half of patients/caregivers (51 per cent) said they were not prepared to deal with these concerns. Interestingly, urologists may be underestimating the prevalence of these issues as they said on average, only about a third of their patients experience physical (31 per cent), psychological (33 per cent), or emotional (31 per cent) impacts.

"Dealing with the diagnosis of kidney cancer had a huge impact on me emotionally," says Maureen Campbell, kidney cancer patient.  "I am realizing, well after my treatment, that I need more information and other supporting resources to better understand and manage the long-term effects of my kidney cancer surgery."

To date, there are no formal survivorship care plans in existence in Canada that address the unique needs of kidney cancer patients.  An individualized survivorship care plan would include specifics such as the potential future health implications of kidney cancer surgery (e.g., kidney function, cardiovascular issues), medications to avoid, specific lifestyle habits to adopt, and the best ways to manage on reduced kidney function.  KCC advocates that patients receive the full details of their kidney cancer (stage, cell type, grade, and risk of recurrence) and be encouraged to share this information with any health care providers they consult with in the future.  All urologists surveyed (100 per cent) and almost all patients/caregivers (98 per cent) agree it is important for those impacted by kidney cancer to have this type of detailed survivorship information.

"It is clear from these results that urologists and survivorship groups need to work towards written survivorship care plans," says Dr. Michael Jewett, Uro-Oncologist, Princess Margaret Hospital. "While urologists often communicate general post-treatment information, many are not providing the information in writing or giving the level of detail that patients require."

To help empower kidney cancer patients with the specific information they need, Kidney Cancer Canada created "Top Ten Tips for Kidney Cancer Survivors." The tips are available at and provide recommendations for kidney cancer patients post-surgery.

About Kidney Cancer Survivorship
Cancer survivorship is most commonly defined as the process of living with, through, and beyond cancer. It starts from the moment of diagnosis and continues for the remainder of the person's life. Cancer survivorship includes the physical, psychosocial and financial issues that impact the person's well-being. Family members, friends and caregivers are also considered cancer survivors as the experience impacts them as well.

Kidney Cancer Canada
Kidney Cancer Canada is a Canadian-based, patient-led registered charity established to improve the quality of life for patients and their families living with kidney cancer. Kidney Cancer Canada advocates for access to new treatments, provides support and information to patients, funds much-needed research, and works to increase awareness of kidney cancer as a significant health issue.  For more information, please visit:

Survey Methodology
The survey was commissioned by Kidney Cancer Canada, with funding from Pfizer Inc., and conducted by Leger Marketing.  Between November 17, 2011 and December 8, 2011, the survey was completed online with 276 patients and 45 caregivers of kidney cancer patients that have/had been diagnosed at stages one through three. A further 40 urologists were surveyed online from November 17, 2011 to November 24, 2011. A probability sample of patients/caregivers of the same size would yield a margin of error +/-5.9%, 19 times out of 20.

i Canadian Cancer Research Alliance, Investment in Research on Survivorship and Palliative and End-of-Life Care, 2005-2008 Report, pg. 37. September 2011.
ii Canadian Cancer Statistics, 2011, Canadian Cancer Society.

SOURCE Kidney Cancer Canada

For further information:

David Mircheff
Environics Communications
(416) 969-2776

Catherine Madden
Kidney Cancer Canada
1 866-598-7166

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