Spring Update – News from International Kidney Cancer Conference


Welcome to Spring!

With this blog post, we’re happy to share some highlights from the 4th Annual International Kidney Cancer Coalition (IKCC) Conference. This conference included delegates from over 20 countries, 6 continents who came together in Amsterdam from April 3-5th 2014 to collaborate, share ideas, and move some international kidney cancer projects forward.

Note: The IKCC based in Frankfurt, Germany is a network of kidney cancer groups worldwide. The IKCC is independently funded from Kidney Cancer Canada. Two delegates from KCC were invited to attend: Deb Maskens (Co-Chair of the IKCC) and Catherine Madden (Executive Director of KCC).


Key Lessons We Came Home With:

If you’re going to have kidney cancer, it’s better to be in Canada than in many parts of the world…


The Global Burden of Cancer / Kidney Cancer


Dr. Peter Boyle, Epidemiologist: Globally, only 9% of ‘cause of deaths’ are recorded by a medical professional. Our statistics of incidence and mortalities only reflect what we know.

Huge gains have been made in some types of cancers:

  • In 1944, the 5 year survival for breast cancer was only 25%. In 2004, that survival rate had jumped to 76.5%.
  • However – and this is important for kidney cancer – those gains were not from a single magic bullet, but from a series of small, incremental steps. We need to be very careful that our healthcare reimbursement systems don’t stop us from achieving what might look like a small step to them.
  • Kidney cancer research needs focus. The mortality rate for kidney cancer has not improved. Incidence of kidney cancer has been steadily increasing since 1975.

Mantra for all:

  • Prevent what can be prevented. Treat what can be treated. Cure what can be cured. Palliate whenever palliation is required.

A Look at Cancer Patient Needs in Africa

Dr. Anne Merriman, founder of Hospice Africa Uganda, described the situation for cancer patients in Africa saying “It’s bad to have cancer. It’s worse if you’re poor.” In Africa, less than 5% of patients can get chemotherapy or radiation. Radical solutions are required. Currently only 15 of 56 African countries have access to oral morphine for pain control. For her work easing the pain of African cancer patients, Dr. Merriman has been nominated for a Nobel Peace Prize:  http://www.hospiceafrica.or.ug/ Dr. Merriman’s talk was inspiring to highlight the work that ONE person can achieve in a lifetime.

Global Trends in Kidney Cancer

Our next distinguished guest was no other than our “own”, Dr. Danny Heng from Calgary, Alberta who presented the global picture for kidney cancer citing 208,000 diagnoses around the world with higher incidence in North America, Australia, and New Zealand. His international database is now tracking some 3700 patients from 26 institutions in 19 countries. International collaborators have developed good systems for overall prognostic markers, but not for prediction on individual cases: we’re dealing with “just medians” – half will live longer, half will live shorter, and many live much, much longer.


Dr. Heng noted some hot topics in clinical trials:

a) Immuno-oncology, both in vaccine trial (AGS-003) and PD-1 inhibitors (nivolumab and others, both alone and in combination). Patient groups (including KCC) are pushing very  hard for more availability of these agents.

b) New agents such as cabozantinib (METEOR study) with particular interest in effect on bone metastasis. We look forward to this study reporting at a future ASCO conference.

c) Continued focus on finding predictive bio-markers for kidney cancer: PBRM1/BAP1 are possible markers that may help predict treatment efficacy. PDL1 expression may be predictive. Bottom line is that we need to study more patients through clinical trials – take blood samples, preserve tumour samples, and ensure this research moves forward. Other diseases (lung, melanoma, colorectal) have known biomarkers that help determine what treatments are most likely to work. Kidney cancer does not have anything like this – yet.

Other Key Topics Raising Awareness of Kidney Cancer:

Huge awareness campaign in the UK: “Be Clear on Cancer” focused on getting the general public to understand that “blood in pee”, even if just once, was cause to visit the doctor. This campaign was hugely successful through television advertising. See commercials here.

Raising Funds for Kidney Cancer

Kidney cancer needs local, national, and international ambassadors to put a face to the disease. In Ghana, film actress Juliette Ibrahim has put her celebrity behind the cause. See her video and song (probably the only song ever to mention the words ‘renal cell carcinoma’ in the lyrics!):

Organizations like Kidney Cancer Canada need ambassadors and need support – not only for important research projects, but also for patient education events, support, phone bills, and materials.  If you can put us in touch with people, companies, organizations that can support our cause, please let us know!

Special Topics for 2014:

  • Renal Tumours in Children
  • Hereditary Conditions and Syndromes involving RCC
  • Caregiver Support, avoiding caregiver burnout
  • Psychosocial support (from point of diagnosis )

Read Other Updates from the Conference:

A full conference report will be posted in the coming weeks. In the meantime, several international delegates have posted photographs and conference reports. Thanks to Joyce Graff for this summary and links here.

We appreciated the opportunity to share with the international community our work on the CanCertainty campaign for oral cancer medication coverage in Canada. Our video received tremendous support. If you haven’t seen it yet, please check it out here: http://www.cancertaintyforall.ca

Always good to network with our international counterparts (check out the t-shirt from Ghana):


It’s also great to be home, back in Canada. Questions and Comments welcome as always!


2 thoughts on “Spring Update – News from International Kidney Cancer Conference

  1. I think what struck me most in this report from the conference was this: “Kidney cancer research needs focus. The mortality rate for kidney cancer has not improved. Incidence of kidney cancer has been steadily increasing since 1975.” That is a very disturbing statistic! It was even more powerful in contrast to the gains that have been made in survival rates with other cancers, such as breast cancer. I do think it is worth noting, however, that regardless of what kind of cancer is considered, survival rates for our sickest patients, those in Stage IV, have not changed much at all in decades. And this is in spite of all the research that has happened. Big gains in breast cancer can probably be attributed to better awareness in catching early diagnoses, but the overall picture is still very bleak for people in later stages. I think that what’s really needed is more research that represents completely new, fresh thinking that questions even the most fundamental assumptions about what cancer is. I continue to search for answers myself, and I’m glad to see there are others keeping their eyes and ears open for that as well! — Sherman Morrison

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