A personal perspective on our Kidney Cancer Canada Survivorship Study released today.
When most people think of someone having a cancer diagnosis, they think of a cancer centre, perhaps a surgeon, a medical oncologist, and maybe a radiation oncologist. Usually treatment starts and treatment ends. And, as we all hope, the patient emerges as a well-informed long-term cancer survivor.
‘You’ll Need Chemo Then?’
Kidney cancer has always followed a different model — and with good reason. The standard treatment for Stage 1, 2, and 3 renal cell carcinoma (75% of all cases diagnosed in Canada) is surgery — and surgery alone. Patients can usually be treated in their community be a local urologist who will perform either a radical nephrectomy or a partial nephrectomy. Without the need for chemo or radiation, the vast majority of patients may never enter a cancer centre for their kidney cancer. And, of course, that can be a good thing!
“See you in 3 months, 6 months, 1 year…”
The downside however is that those patients may never benefit from the multidisciplinary supports available to other early stage cancer patients at a regional cancer centre. There are programs, resources, libraries, and counsellors to discuss every stage of cancer, what it means in your life, and how to cope and adjust to the diagnosis and its after-effects. One of the remarkable findings in our study of 321 patients and caregivers diagnosed at early stage kidney cancer was the high percentage of those who had emotional/psychological/physical difficulties post-surgery — and that few of these patients knew where to seek out help. (Interestingly, the urologists surveyed felt that far fewer of their patients would feel emotional or psychological effects.)
“The Blur of Information at the Time of Diagnosis. What Do You Remember Being Told?”
Our study also highlighted a strong disconnect between information shared (by urologists) and information remembered (by patients and caregivers). Many patients could not remember being told core information about their cancer (e.g., stage, grade,cell type) and few remember being told anything at all about long-term health implications such as Chronic Kidney Disease (CKD), hypertension, or relative risk of recurrence. Many could not recall ever being told to avoid certain medications like ibuprofen and NSAIDs which can be toxic to the remaining kidney(s).
“So, Where Do We Go From Here?”
Most researchers in cancer survivorship would agree that all cancer patients would benefit from a written Survivorship Care Plan that they could revisit and share with other health care practitioners. Currently no kidney-cancer specific survivorship plan exists. For the short-term, we can all do our best to keep our own personal health records, including copies of reports, and we can all open up the discussion with our urologists about our long-term survivorship. With the support of our Medical Advisory Board, we’ve published the Top 10 Survivorship Tips on our website.
All of us, stage one through stage four, need a survivorship plan. We look forward to working with Canadian kidney cancer specialists to develop tools and information that will ensure that patients diagnosed at every stage are empowered with the latest information on kidney cancer survivorship.
We’d love to hear your survivorship story. Feel free to add a comment and share here or on our website of Facebook page. I’ve linked to my own survivorship story here:
Personal Survivorship Story, as published in the Cancer Advocacy Report Card in 2008, entitled: ‘In a Row Boat on My Own’
Thank you all for joining my Row Boat since 2008. We are stronger together!