Collective Wisdom: Kidney Cancer Updates from ASCO 2016

By: Deb Maskens, Vice Chair, International Kidney Cancer Coalition (

This year’s ASCO (American Society of Clinical Oncology) meeting in Chicago, June 3-7, had the theme: “Collective Wisdom, the Future of Patient-Centered Care and Research”. This meeting hosted over 30,000 attendees, including cancer researchers and healthcare professionals from all over the world, and a small but very active group of some 400 patient advocates focused on various aspects of cancer care, survivorship, and health policy issues.

Attending on behalf of the International Kidney Cancer Coalition (IKCC), I had the opportunity to attend sessions focused on health system sustainability, compassionate access, survivorship care, and of course specific medical updates in kidney cancer. What follows is my personal summary of highlights and take-aways as an mrcc patient and patient advocate.

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Kidney Cancer Updates

Two major papers for kidney cancer were much anticipated and presented at a joint session on Sunday June 5th:

1. Cabozantinib

Dr. Tony Choueiri presented the Overall Survival (OS) data from the METEOR clinical trial. (At a previous conference it was noted that cabozantinib was superior to everolimus in this trial based upon PFS data (Progression Free Survival – or the period during which the cancer does not get worse.) At ASCO, Dr. Choueiri presented the difference in overall survival from those patients who had taken cabozantinib versus everolimus. The OS difference is statistically significant at approximately 5 months. Note: while this trial cannot be compared head-to-head with the CheckMate 025 trial, the overall survival benefit appears to be the same as nivolumab, another drug compared to everolimus in a different trial. For a more detailed review, click here.


What does this mean to patients?
It looks like cabozantinib will become a viable option for patients whose disease has progressed on a first-line VEGF-TKI (e.g., following sunitinib or pazopanib). However, access to cabozantinib depends upon regulatory approval and reimbursement. Currently cabozantinib is FDA approved in the United States under the brand name Cabometyx.

In Canada, there is currently no early access program for cabozantinib. The company (Exelixis, based in San Francisco) has not yet filed for Health Canada approval. (In this case, any delay in bringing the drug to Canada is related to the manufacturer not filing for regulatory approval (yet) in Canada, not due to processes within Canada. Patients interested in cabozantinib should ask their physician and also consider clinical trials that might include cabozantinib. Please make sure you are registered with Kidney Cancer Canada so that we can inform you of any new access programs as they arise.

2. Nivolumab

Dr. David McDermott presented long-term survival data from earlier (Phase 1 (34 patients) and Phase 2 (167 patients) studies) of nivolumab in kidney cancer, noting that some 30% of patients were alive at the 4-year mark. Of those, a significant percentage of long-term survivors showed no response to nivolumab (had either SD (stable disease) or PD (progressive or worsening disease) as their best outcome. Toxicities were noted over a 50-month timeframe showing that the vast majority of toxicities happened in the first 6 months, and hardly any were noted beyond one year. For a more detailed review, click here.


What does this mean to patients
Lots of questions about how immuno-oncology (e.g., nivolumab) works and for which patients (noting there is no biomarker). Traditional measures of response (e.g., tumour shrinkage) seem to be inadequate to determine long-term patient benefit. Complete response (or “NED – No Evidence of Disease) may not be realistic because a long-term durable response may be seen without completely removing all evidence of disease. Certainly there were lots of questions about the data that will be more fully answered by observing the results of those patients who participated in the bigger Phase 3 clinical trial.

Nivolumab questions asked by researchers:

  1. Are we using the correct dose and schedule?
  2. Could treatment be stopped after xx months?
  3. How can we pre-select those patients who are most likely to benefit and advise those who are most likely not to benefit

In Canada, nivolumab is currently available through a Patient Access Program through Bristol Myers Squibb. For more information, please contact Kidney Cancer Canada.

Clinical Trials in Kidney Cancer

Now more than ever before, clinical trials present an excellent opportunity for kidney cancer patients to access new medications and to contribute to finding the best treatments. Clinical trials are available in numerous countries from the moment of diagnosis through to advanced disease. Many of these trials are recruiting kidney cancer patients specifically, and some will accept patients with various types of solid tumours (renal cell carcinoma being one). Patients are advised to ASK and keep asking about clinical trials as options.

Lots of information about clinical trials for kidney cancer patients is up on our website: We regularly post updates about new clinical trials on our Facebook and Twitter accounts as @IOkidney. Be sure to follow these accounts online and bookmark the website as one of your sources for kidney cancer information.

Clinical trials are available in many Canadian provinces. Please visit the Kidney Cancer Canada website and call our helpline for more information about specific trials that might be available to patients in your province – or in a neighbouring province where access might be possible.

Outside of Clinical Trials…

With new treatments becoming available, there are many unanswered questions about how clinical trial results will translate to real benefit in clinical practice. The number of potential sequences is growing exponentially and there is no agreement, even among the top experts in kidney cancer. (Of course from a patient perspective, the *best* sequence will be a sequence of ONE treatment that really works and is durable!) Researchers and advocates alike are calling for the collection of Real World Evidence (RWE) through patient registries that track patients over the long-term. Patients should ask about whether their information is being collected and shared for the benefit of all.

In Canada, many kidney cancer patients have given their consent for their (anonymized) information to go into the Canadian Kidney Cancer Information System (cKCis). Please ask your physician whether your cancer centre is participating in this national information system and whether you can contribute your information.

Lots More on Website

Lots more updates in kidney cancer were presented (see for updates on brain metastasis, stereotactic radiation, and many trials reporting on use of new agents including avelumab, atezolizumab, pembrolizumab, alone and in combination. For a great article on emerging combination therapies for kidney cancer see this Editorial by Drs. Rana McKay and Tony Choueiri.

Closing Thoughts

Sessions on “Compassionate Use” and “Financial Toxicity” served as an important reminder that none of this research will help patients unless the treatments are affordable and offer VALUE (a word spoken 1,000 times at ASCO this year). While existing “Value Frameworks” from ASCO (and ESMO and other organizations) attempt to quantify value to our healthcare systems, we all need to remember that patients, caregivers and families have social values that also need to be integrated.

When all is said and done, all of this research is for patients towards a cure. As U.S. Vice President Joe Biden said in his address to ASCO, we need to work together like never before, to collaborate in ways we have not seen before – across cancers, across borders, breaking down any barriers that get in the way of progress. Patients will need to be equal partners – as one motto says “not FOR us, but WITH us”.

We look forward to your comments on this summary.


Kidney Cancer Updates from ASCO GU 2016


Hello to Kidney Cancer Canada friends,

On behalf of Kidney Cancer Canada, I am happy to share with you some highlights of a recent medical research meeting. The American Society of Clinical Oncology (ASCO) held its annual Genitourinary (GU) Cancers Symposium in San Francisco from January 7-9.

The theme of this year’s Symposium was “Patient-Centric Care: Translating Research to Results”. The program included localized and advanced disease, immunotherapy and health care outcomes. The program was bursting with kidney cancer content including 19 presentations, 129 posters and 2 evening ancillary meetings. It was wonderful to see how much research and progress is being made in kidney cancer, and how it is transforming treatment options for patients.

Please see below for some highlights of the conference from a lay perspective. As always, if you have questions about any of these updates and how they may apply to your care, please feel free to give us a call and, of course, ask your physician.

Key Highlights for Kidney Cancer Patients and Caregivers

large session photo

New Treatments Providing Additional Hope, Extended Survival

The major news in kidney cancer continues to revolve around the emerging role of immuno-oncology in the treatment of kidney cancer and how this compares to other new agents such as cabozantinib (Cometriq). Key points of discussion:

  • A new treatment option for advanced kidney cancer, nivolumab (Opdivo) is now approved in the U.S. by the FDA. Cabozantinib (Cometriq) is currently being reviewed by the FDA based upon strong Phase 3 data. Both of these treatment options have emerged as alternative treatments to either axitinib (Inlyta) or everolimus (Afinitor) in 2nd line treatment. Experts at GU ASCO discussed which treatment options they would prefer for selected patients and why.
Note: nivolumab is currently available to Canadian mrcc patients through compassionate use while it undergoes our review and approvals process. A similar program for cabozantinib is yet to be announced in Canada.
  • Existing VEGF/TKI and mTOR treatment options continue to be refined. Experts focused on WHEN and WHY to switch therapies noting that slow disease progression may not warrant a change in therapy. In many cases, “significant toxicity” would not warrant a change by kidney cancer experts familiar with management of side effects. Even new lesions found may be treated with localized therapy and allow for continuation on therapy.

Clinical Trials to Answer Many Unanswered Questions

  • Many clinical trials are currently underway to determine whether the current percentage of responders (people who benefit) from an anti-PD1 such as nivolumab (21%) could be increased by combining drugs together. Side effects (toxicities) of some combinations have been noted and need to be carefully weighed against the potential for increased benefit.
  • Much is yet to be learned including: How to determine which patients would most likely respond to immuno-oncology (the quest for biomarkers), what combinations of therapies are possible, and whether it is safe to stop the intravenous treatments after a time.
  • Reasons NOT to be treated with immuno-oncology included: pre-existing auto-immune diseases or a symptomatic tumour burden
  • Overall, experts agreed that clinical trials present the very best option for patients to contribute to this research and potentially benefit from new treatment options.
Note: For information about clinical trials available in Canada, please contact Kidney Cancer Canada at
photo 2
Has Immune Checkpoint Blockade Re-Established Immunotherapy as a Key Pillar of Kidney Cancer Care? (panel from left to right) Michael B. Atkins, MD | Deb Maskens, Patient Advocate | Brian I. Rini, MD, FACP | Robert J. Motzer, MD

Non-Clear Cell Renal Cell Carcinoma – Can we Do Better for These patients?

  • Ram Srinivasan (NIH) presented a strong case for improving treatment options for patients with non-clear cell histologies (papillary, chromophobe, collecting duct) including hereditary kidney cancers. Treatments must be targeted to specific pathways for these subtypes.
  • Clinical trials with MET inhibitors, and with combinations such as bevacizumab/erlotinib have produced encouraging results in Papillary mRCC.

Research Posters of Interest

The impact of active smoking on survival outcome in metastatic renal cell carcinoma patients treated with targeted therapy. Research concluded that active smoking diminishes overall survival rates and that smoking cessation should be a counselling priority for all patients on targeted treatments.


Trends of metastasectomy [surgical removal of metastases] for metastatic renal cell carcinoma and their impact on overall survival. Research concluded that in the era of targeted therapies, surgery has perhaps been under-utilized for metastatic rcc, despite offering a proven overall survival benefit. In the U.S., healthcare coverage disparities may be in part responsible.

group photo
(from left to right) Dr. Georg Bjarnason, Medical Oncologist | Heather Chappell, Executive Director, Kidney Cancer Canada | Deb Maskens, Vice Chair IKCC | Dr. Anil Kapoor, Uro-Oncologist

Thanks to Deb Maskens, Vice Chair, International Kidney Cancer Coalition (IKCC), for her input into this Blog. As always, we welcome your questions, thoughts and insights!

For more information about the whole conference, please see here.

Heather Chappell
Executive Director
Kidney Cancer Canada

Updates in Renal Cell Carcinoma from ECCO/ESMO Conference 2015

Dear fellow patients, caregivers and supporters,

IMG_20150925_103038Lots of news in kidney cancer this week! As Vice Chair of the International Kidney Cancer Coalition (IKCC), I had the opportunity to attend a key conference held in Vienna this week at which several important (and long-awaited) studies were presented. What follows are some highlights on the major presentations pertaining to kidney cancer.

As always, please note that any questions about your own care should be directed to your physician. I am a patient advocate at this conference, not a medical professional. That said, I hope you find the updates useful as springboards for discussion!

Two Successful Trials in mRCC (metastatic Renal Cell Carcinoma)

  1. METEOR Trial
    (cabozantinib vs everolimus in 2nd line mrcc).

The METEOR trial results were published based upon results from 658 patients in 26 countries. (Thank you to all of those patients and their families for your participation.) Compared to everolimus (brand name Afinitor), cabozantinib (an oral cancer medication that targets VEGF and MET) displayed a high level of disease control in the 2nd line setting. Further research will report on control of bone metastasis, and analyze particular subgroups of patients so that experts can better determine which patients (e.g., with which mutations) will most likely derive the most benefit. Some 60% of patients taking cabozantinib required dose reduction (further supporting arguments — as with other agents — that one size/dose does not fit all patients.)

For those inclined to read the full paper, please see here:

  1. CHECKMATE-025 Trial
    (nivolumab vs everolimus in 2nd line mrcc).

The CHECKMATE-025 trial accrued 821 patients in total who were both 2nd and 3rd line. Results as reviewed by Dr. Cora Sternberg (Italy) highlighted that those patients with only one prior treatment did better. Patients treated with nivolumab (intravenous therapy every 2 weeks) had an Overall Survival (OS) benefit of over 5 months as compared to everolimus (oral, daily). The ORR (overall response rate) with nivolumab was 25%. In some patients where treatment was stopped, the response appears to have continued. One clear question remains: how will we know when it is safe to stop therapy?

What’s new here is that nivolumab is the first immune checkpoint inhibitor drug to prove effectiveness in the treatment of kidney cancer (with others surely to follow). Nivolumab (a PD-1 inhibitor) demonstrated survival benefit in patients regardless of the extent of PD-L1 expression in their tumours. (A clear biomarker to be used as selection criteria is not yet known – in other words, it is not clear how to determine which 25% of patients will benefit from the treatment.)

This week in anticipation of our first “immuno-oncology” (IO) treatment for kidney cancer, the IKCC launched a brand new website for patients that includes what you need to know about clinical trials, side effects, and how the new treatments will integrate with existing treatment plans. Please check it out: and follow us on Twitter (@IOkidney) and Facebook (IOkidney)

For those inclined to read the full paper for the CheckMate-025 study, please see here:

From left to right : Deb Maskens (Canada), Dr. Eric Jonasch (MD Anderson, USA), and Berit Eberhardt (Das Lebenshaus, Germany)

Other Updates:

Sadly, not all trials give us the results we were hoping for. Another study of 705 patients reported results of a novel vaccine therapy. The trial design included two arms: IMA901 (a multi-peptide cancer vaccine) in combination with sunitinib (Sutent) vs sunitinib alone as 1st line therapy. Results were disappointing in that the vaccine therapy did not improve upon the results of sunitinib alone. While IMA901 was shown to have a favourable safety profile, there was no improvement in overall survival by adding the vaccine.

So, what does all of this mean to patients in Canada today?

First the good news: two new and very positive-looking drugs are on their way to approval. Those of you who know this process know full well that this is the very beginning of the “long and winding road” with no certainties of reimbursement in Canada. Neither of these two new drugs is yet FDA approved, let alone Health Canada approved… so the wait until provincial reimbursement could be as much as two years from now. We will keep you updated!

In the meantime, Kidney Cancer Canada provides an important voice for patients across Canada and will work on early access programs, clinical trials, compassionate use, and anything we need to do to improve access for patients. If you or your family member have had access to either of these new drugs, please let us know. (We will need your input for future submissions to government agencies!) If you need help today in accessing specialist care or clinical trials, please get in contact with us and we will do our very best to help you: contact us at

With kind regards to all – and with sincere thanks to every patient and family who has helped bring these important new advances forward!

Deb Maskens
Vice Chair, International Kidney Cancer Coalition (IKCC)

Kidney Cancer Updates from ASCO 2015

ASCO 2015
Chicago, May 28-June 2, 2015

Deb Maskens, Past Chair & Co-Founder and Heather Chappell, Executive Director

As you may have heard, many cancer professionals attended a major research meeting in Chicago recently. The American Society of Clinical Oncology (ASCO) held its annual meeting in Chicago from May 28-June 2. This meeting attracts over 35,000 researchers, physicians, nurses, health care providers and advocates from around the world. It’s quite an experience to be part of this huge conference that takes over the city of Chicago.

We are grateful to ASCO’s Conquer Cancer Foundation for providing a patient advocate sponsorship for Heather Chappell, Executive Director, to attend this conference, along with Deb Maskens, our Past Chair and Co-Founder. Canada was well represented there with 272 abstracts presented in the form of posters and presentations, the 2nd highest non-US country contribution! It was wonderful to see so many Canadian kidney cancer researchers and clinicians there as well.

Dr Georg Bjarnason with a great poster presentation at ASCO 2015

Here is our ‘lay’, non-medical perspective of the sessions that we thought were interesting for the kidney cancer patient community. As always, if you have questions about any of these updates and how they may apply to your care, please ask your physician.



Immuno-oncology was the topic everywhere for many types of cancers including kidney cancer. Until any immuno-oncology drug is approved for kidney cancer, patients can access through clinical trials. The first data to report will be for nivolumab (PD-1) possibly later this year. Words of wisdom we heard from many of the medical experts include:

  • Patients need to investigate thoroughly: these clinical trials are not right for everyone. Some of the toxicities can be long-term (permanent) and even the most experienced nurses are still learning how to manage the side effects which are quite different from those of targeted therapies. While there has been a great deal of media attention about immuno-oncology, we still have much to learn about “which patient” will respond.
  • Early indication is that some of the more aggressive kidney cancers (Fuhrman grade 4 or sarcomatoid mrcc) may respond better. It may be true that the worst-acting tumours will be the best responders, perhaps due to the high number of genetic mutations.
  • Patients on clinical trials should, whenever possible, consent to a biopsy if a tumour is accessible. Rationale is that if you happen to be a responder or not, you will know why – and the results from the biopsy could help direct decision making for future treatments.
  • Biomarkers for immuno-oncology treatments are being sought, but none is currently predictive of response.

For information about clinical trials for mrcc including immuno-oncology trials, please contact Kidney Cancer Canada. This information changes quite quickly. Trial sites are coming online across Canada in major centres.

danny and kappor
(top left) Deb Maskens, Dr. Danny Heng, Heather Chappell – (top right) Dr. Naveen Basappa, Heather Chappell, Dr. Anil Kapoor – (bottom left) Dr. Neil Reaume, Heather Chappell – (bottom right) Dr. Christian Kollmannsberger, Heather Chappell


One pleasant surprise was to see a new drug, lenvatinib in combination with Afinitor achieve excellent results in the 2nd line. This trial was conducted in 37 centres in 5 countries. All patients had one prior VEGF therapy. The median to progression in the 2nd line was 14.6 months, indicating that further studies with this new drug are warranted.

Several investigators noted that there could be big changes in the 2nd line after trials for cabozantinib and also nivolumab report later this year. We are eagerly awaiting the results of those trials.

nivolumab impressive overall survival in kidney cancer clear cell RCC


Often called a “basket diagnosis”, non-clear cell rcc is not one but many different diseases. Trial results from the ASPEN trial for non-clear cell mrcc included 108 patients in 3 countries with many “unclassified” histologies, papillary, and chromophobe. Results favoured sunitinib (Sutent) over everolimus (Afinitor), but neither treatment was particularly impressive in this group of mixed patients. Some genetic profiling from other studies indicates that possibly a TSC1 or TSC2 mutation may indicate likelihood of response to everolimus (Afinitor). Other studies are underway with cMET inhibitors (including in Canada) and with Avastin/Tarceva for papillary only.

Summary conclusion is that patients with non-clear cell mrcc should be referred to expert centres and enroll in clinical trials whenever possible.

Dr Jennifer Knox (centre) sharing her research with Deb Maskens and Dr. Christian Kollmannsberger


For many cancer types including kidney cancer, a spread to the brain, or brain metastasis (mets), can be a treatment challenge. Surgery is sometimes difficult due to location and the blood-brain barrier can prevent systemic treatments from working. There was a group of research papers presented tackling this treatment challenge. Research focused on how to manage the side effects of the current treatment options, and highlighted ongoing research in detection and treatment options.

  • Whole brain radiation (WBR) side effects may be worse than the treatment benefits for some patients. WBR can cause more thought and memory problems than stereotactic surgery alone, and may not improve survival. Patients should talk to their doctors about whether this treatment option is right for them. A great summary of this research can be found here.
  • Research in managing the side effects of whole brain radiation is ongoing. Some treatment options currently under study include hippocampus-sparing procedures and pharmaceutical options to prevent cognitive decline.
  • New treatment options such as targeted therapy and immuno-oncology are currently being studied.
  • Future research should focus on how to prevent and detect brain mets early such as:
    o   Predictive markers for when brain mets will occur
    o   Preventing brain mets from happening at all after 1st line targeted therapies
    o   How to detect brain mets early when they are easier to treat


Deb Maskens, Dr. Scott North, Heather Chappell

It was great to see so many sessions focussed in this area, complementing the clinical treatment sessions. Some of the focus areas at this year’s conference included financial burden of treatment, patient-centred care and survivorship (post treatment).


There was a group of presentations focused on economic disparities and the financial burden of cancer treatment on patients. The term, ‘financial toxicity’ was used to describe the financial hardships due to high out-of-pocket spending for cancer treatment.

  • Bankruptcy rates are higher in cancer patients in the U.S. than in the average population
  • There is an association between health outcomes and financial distress
  • Mortality risk was 79% higher among cancer patients who filed for bankruptcy.
  • Higher co-pays for treatment, starting at $50/month, have a 70% higher likelihood of non-adherence to medication (patients may skip doses).

There was discussion around the role of physicians or other members of the healthcare team discussing financial issues with patients. While the data presented was focussed on the U.S., there are financial barriers for Canadians patients as well, especially with take home medications. You can learn more about this issue in Canada here.

Make sure to discuss with your healthcare team if you are experiencing financial distress from your cancer treatment.


It was no surprise to see research confirming that patient-centred care leads to better patient outcomes. Some key indicators of quality care include good follow-up, integrated systems that support good information sharing, and connecting patients to community resources.


There was a session dedicated solely to survivorship care plans. These are tailored plans that are developed for each patient with guidelines for monitoring and maintaining their health. These are typically shared with patients and their primary care physicians. Some great tips on successful implementation was shared, including how to adapt the IT platforms and how to create an efficient program for busy clinicians. Moving forward they are looking at expending the reach to include community services.

The Kidney Cancer Research Network of Canada (, supported in part by Kidney Cancer Canada, is currently conducting research in this area as well, developing survivorship care plans for early stage kidney cancer patients. Pending funding, work on survivorship care plans for advanced stage patients will follow the initial pilot project.



The overall message from ASCO 2015 is that the field of cancer treatment is changing rapidly. Words such as “practice-changing” and “breakthrough” were heard often, but there is also room from some caution while we await more information from upcoming trials.

Most of all, we heard from many, many presentations that we are ALL indebted to the many cancer patients and their families who have engaged in previous trials and who will continue to contribute to moving this research forward. Thank you!

As always, your questions, thoughts and insights are welcomed!

For more information about the whole conference, please see here.

2015 IKCC Expanding Circles Conference

5th  International Conference for
Representing Patients with Kidney Cancer
April 16th – 18th
2015 Morristown, New Jersey

Organisations attending the 2015 IKCC Expanding Circles Conference

I had the honour to be invited to join the International Kidney Cancer Coalition for their fifth annual International that was held in Morristown New Jersey.

This was my third conference with this inspiring “organisation of organisations” and as a member of their previous Advisory Council (see below) I not only learned a lot but had the chance to network with patients’ advocates from several countries.

As usual, our own Deb Maskens was brilliant as vice chair and host extraordinaire.

This is a brief report on the highlights of this conference.


Some of you may know this, but the IKCC was formally incorporated in the Netherlands as a Non for Profit Organisation in December 2014. The Board members are all old timers with Dr Rachel Giles M.D, a nephrologist-oncologist (seems there are only six in the world) from the Netherlands is Chair, Vice Chair is Deb Maskens and the other Board members are the following:

  • Berit Eberhardt from Germany is the Manager of kidney cancer at Das Lebenhaus, the organisation that helped IKCC come to life and become independent.
  • Joyce Graff, M.A., is from the USA and founded and oversaw the VHL Family Alliance. She is now with Powerful Patient Inc.
  • Michael Herbst, PH.D is from South Africa. After a long career as author, professor and editor, he currently is Head of Health at the Cancer Association of South Africa.

    Rose Woodward
  • Anne Wilson from Australia is the CEO and Managing Director of Kidney Health Australia who, since joining IKCC 4 years ago, successfully created a totally new sector in her organisation dedicated to Kidney Cancer.
  • Rose Woodward from the UK is a founding member of IKCC and founder of KCSN, the largest and most active support network for people touched by Kidney Cancer in the UK.

The Management Services are handled by Das Wissenshaus with Markus Wartenberg from Germany as Advisor, and Julia Black “who knows everything” (mantra of the Conference) from the UK as Administrative Coordinator.

This is a group of highly gifted and passionate people and you can learn more about IKCC on this link. Pictures are already there and some will be added later.

With this first official Board of Directors, the former Leadership Team and Advisory Council of IKCC have been dissolved and representatives now have the opportunity to become Affiliated Organisations, Associated Individuals or Supporters of the IKCC.



This 5th edition brought together 45 patient advocate delegates from 20 countries.

From the US who “has is all”, to Ghana where there are no oncologists, the Conference as usual gave us a great perspective of where we are in terms of access to treatments, how kidney cancer is dealt with and how we can share best practices in advocacy.

The focus of the Conference was Latin America and there were representatives from Mexico, Peru, Brazil and Colombia.

Suffice it to say that access in these countries is almost exclusively reserved to the wealthy and the main advocacy technique for people in the public system is hiring a lawyer to “sue the Government”. Incidence of kidney cancer in those countries appears way lower than in the US, Canada and Europe with kidney cancer occupying the 18th or 19th position among all cancers. That being said, 58% to 60% of patients are diagnosed at the metastatic stage. Dr Fabio Shutz (Brazil) commented that “kidney cancer is a disease of developeYashwant Sawantd countries”.

Dr. Fabio Shutz (Brazil), Zhenxi Zhong (China), Yashwant Sawan (India) and Ann Wilson (Australia)

One country that has us realize how very lucky we are is India where an oncologist can see close to a thousand patients a day. Ten kidney cancer patients share an appointment and the challenge is making sure they are fed while on therapy.

Yashwant Sawant from the V Care Foundation in India was happy to report that his organisation was able to provide Sutent to 1 000 patients in collaboration with Pfizer. What is even more admirable is that they were able to provide access in a very timely manner, about 2-3 weeks from prescription!

In China, patients advocates need to make sure they do not do anything that might provoke the Government. Zhenxi Zhong from the Shangaï Roots & Shoots organisation had everyone laughing when she explained what a GONGO was: i.e. “a government organised non-governmental organisation”. It seems such government-led NPOs are not rare in China…

And to conclude this world tour, it is important to salute the fact that in Australia, Board Member Ann Wilson was able to set up Australia’s first Kidney Cancer Group under the auspices of Kidney Health Australia of which she is Managing Director and CEO. Kirren Grennan, a registered nurse who is Project Manager for Kidney Cancer, has just completed an online survey of clinical trials/research protocols for kidney cancer in Australia.


Medical sessions by renowned kidney cancer experts gave us all a good summary of where things are in terms of upcoming treatments with a focus on immuno-therapy (or immuno-oncology) which is not the panacea everyone (especially patients) seem to think it is.

The take home message is that phase III studies will give us a better sense of how much of a performance we should expect from these drugs for kidney cancer, keeping in mind that the costs are going to be very high, side effects tolerable but sometimes life-threatening. The most promising characteristic is that a percentage of responses are seen to last for a long time, even after the drug is stopped.

I will not attempt to summarize those presentations but here are a few notable excerpts from the expert doctors who graced us with their presence.

Deb Maskens, Dr Harold Varmus and Dr Rachel Giles M.D

Our first keynote speaker was Dr Harold Varmus, outgoing Director of the NCI and co-recipient of a Nobel Prize (1989) on the genetic basis of cancer. Dr Varmus stressed the importance of working on a global level when dealing with cancer. Cancer registries and National Care plans are the tools needed to share and move forward.

One interesting figure: the budget of the NCI is $ 5 billion, but has been severely cut in recent years. Dr Varmus “we need to get our budget back in shape”.

  • Great quote: “To address the growing international challenge of cancer, our reach should exceed [our] grasp.”
  • One interesting statement: “we cannot treat ourselves out of the cancer problem” which is a way of communicating the importance of prevention.

Dr Jonathan Coleman, oncologist (Memorial Sloan Kettering Cancer Center, NY):

  • “with 25% of patients being diagnosed at stage 4, kidney cancer is the most deadly urological malignancy”
  • “partial nephrectomy patients receive a local anesthetic in the flank and are out of the hospital a day after”
  • “35% of patients with a radical nephrectomy will have renal insufficiency eventually”

Dr Ram Srinivasan, oncologist (NCI/NIH Bethesda, Maryland):

  • “best treatments for non-clear cell kidney cancer are research protocols”
  • “patients with non-clear cell rcc should be referred to specialty centres early”

Dr Janice Dutcher from the Cancer Research Foundation (New-York):

  • On immuno-therapy: “It’s rough, but it works!”
  • Dr Dutcher gave us a comprehensive update of historical (HD-IL2) and upcoming treatments and research protocols.
  • In answer to a question about foreseeable cost of an immunotherapy treatment: A course of Ipilimumab treatment (4 doses) is around $120K and that does not include what is called “maintenance” after treatments. Adding a second drug in combination will drive costs even higher.

    Dr Janice Dutcher

Dr. Allan Collins, Nephrologist (Minnesota):

  • “the longer you survive, the more kidney function comes into concern”. Kidney function declines for everyone over age 50. When kidney function declines, best thing to do is Control Blood Pressure.
  • “After nephrectomy, the remaining kidney recovers 60-70% of total function”

Australian registry study suggests that long-term follow-up should not only be about cancer recurrence but also for CKD (chronic kidney disease).

For other medical speakers you can consult the IKCC 5th Conference Agenda.


Many of the representatives were patients themselves and we had several presentations on patients’ stories.

On day 3, it was quite marvelous to see 2 patients sharing the stage who are both in complete remission after undergoing treatment with Interleukin 2: Dave de Bronkart (the famous e-patient Dave) 8 years NED (no evidence of disease) and Peggy Zuckerman also NED for close to 12 years. Both say they owe their life to the collective wisdom of fellow patients. Both advocate for patient’s participation in their own care, D. de Bronkart through the Society for Participatory Medicine and P. Zuckerman who advocates with various groups and has her own blog:

Dave de Bronkart

Dave de Bronkart’s gave a highly entertaining and inspiring keynote lecture which featured a 3-D print of his lung metastases and a couple of 3-D printed figurines of…, e-patient Dave (picture should be up soon on IKCC’s Facebook page).


The Global Patient Charter for Kidney Cancer Care developed during last year’s Annual Conference in Amsterdam was published in the most prestigious Journal of European Oncology. A million people are living with kidney cancer all over the world and this charter was designed to promote the global need for equity of care and access to expertise for patients throughout the world. If you have not read it, here is the link Global Patient Charter. It is already translated in twelve languages, the latest being Arabic which will be added shortly to the IKCC site. All your ideas on how to disseminate this important document and on how your province or region fares in attaining the standards itemized in the Charter are most welcome.



I have left a lot out as it is hard to summarize 3 intense days as these were. I also don’t have Deb’s proclivity with medical summaries.

I hope this will generate your interest and bring you a larger perspective on the state of kidney cancer throughout the world. I hope to have shared some of my enthusiasm.

One important fact, IKCC fully funds travel and conference attendance for all delegates, so participation is in no way an expense for Kidney Cancer Canada.

Nicole Giroux
Kidney Cancer Canada

April 29, 2015

Kidney Cancer Updates from GU ASCO Conference, Feb 2015

Hello everyone,

Welcome to March. This issue features medical information that might be of interest to kidney cancer patients and their families. Apologies if some of this sounds like gobbledy gook in places. If you have questions, please just ask.

On behalf of Kidney Cancer Canada and the International Kidney Cancer Coalition, I had the opportunity to attend GU ASCO (Genitourinary Cancers Symposium hosted by the American Society of Clinical Oncology).

Many oncologists who specialize in kidney cancer attend and present research updates at this annual meeting. Please note that these highlights are written from a patient advocate’s perspective. I am not a medical professional, but I have a keen interest in kidney cancer. If you have questions that pertain to your own case, please consult with your physician.

Ok. With that disclaimer done, here’s what I found to be new and interesting to the kidney cancer patient community:

Adjuvant Treatment Has Proven Unsuccessful

The ASSURE trial, presented by Dr. Naomi Haas: this was a clinical trial of sunitinib (Sutent) vs sorafenib (Nexavar) vs placebo in the Adjuvant setting (post-nephrectomy, higher risk, but with no visible metastasis). Some 25% of patients required down-dosing due to toxicities. Accrual was faster than expected with some 1943 patients from Canada and the U.S.

Unfortunately the results showed that these medications taken in this setting do not affect the likelihood or timing of recurrence. While this is disappointing news, it’s important for everyone to know and we all owe a HUGE thank you to those patients and their families for helping us better understand when to use (and not use) the current medications. Other Adjuvant trials are ongoing with other agents and will report in future conferences. Because this trial collected tumour and blood samples, every single participant has contributed to building a database so that researchers can continue working. On behalf of all of us, thank you for participating in this really important trial.

Net: The standard of care for patients following nephrectomy has not changed. Patients (who are not on a clinical trial) should be followed closely as per our national guidelines.

Immuno-oncology Update:

None of the immuno-oncology drugs is yet FDA-approved for renal cell carcinoma — potentially the first will be later this year and approved in the 2nd line IF that trial is successful, or could be 2016. Some interesting clinical trials are now underway in every form of cancer, including kidney cancer. Important to note that these treatments have a very different side effect profile – can affect any organ system and create “any-itis” including pancreatitis, pneumonitis, arthritis, colitis. Can range from completely asymptomatic to very severe. Patients will need to be educated about early intervention and reporting. Noted: “1 day in reporting your symptoms could be 1 extra week in the hospital”. Some severe toxicities have been noted, particularly in combination trials. Important for patients to be enrolled in clinical trials where there is expertise in immuno-oncology (from melanoma experience, HD-IL2 experience, etc.)

Complete Responses and Drug Holidays

Complete Responses and Drug Holidays with VEGF-TKIs (Dr. Laurence Albiges): Interesting presentation for those patients who achieve a Complete Response (CR). Of 112 patients, the average time on treatment to CR was 12-18 months on treatment. To confirm a CR, the recommended approach was to wait until you have 2 CT scans, a minimum of 3 months apart, with no visible disease. At that point, a drug holiday could be started (median break duration was 16.8 months). The response rate at treatment re-challenge (either with the same or a different VEGF-TKI) was 66-87%.

Net: We have all met patients who are “NED” (No Evidence of Disease). There has been some discussion about whether these patients should stay on drug or take drug holidays. This study provides some guidance.

Drug Holidays: an interesting study is ongoing in the UK (STAR trial, Dr. Janet Brown) with 1000 patients with two streams. Everyone receives 4 cycles of a TKI (either sunitinib or pazopanib – patient choice) and then either continues with the drug OR takes a treatment break until progression (and then restarts for 4 cycles). This is an important study that could offer Quality of Life benefits as well as health economic benefit if successful. Dr. Brown reported that the study has 340 patients to date.

Non-Clear Cell RCC

Dr. Marston Linehan (NCI/NIH) made a clear point that kidney cancer is not kidney cancer. There are at least 20 different types, at least 15 different genes/types identified already. For papillary rcc, there are some promising studies at the NIH:

  1. Avastin + Tarceva: trial will be expanded later this spring to be able to accept more patients. Achieving durable patient response (some patients now at 3 years+).
  2. INC280 (MET inhibitor) trial ongoing:

Elsewhere there are various trials for papillary mrcc patients with MET inhibitors, including this one being offered in Canada.

Some Interesting Clinical Trial Results and Progress Updates

  1. SBRT: Dr. Patrick Cheung from Sunnybrook (Toronto) presented on SBRT (stereotactic body radiation therapy) for oligo-metastasis — isolated spots of metastasis where the goal is to eradicate all visible sites of disease. This technology is achieving high local control rates of disease (70-90%) for rcc tumours and can be applied to virtually any body site now. Also discussed this clinical trial opening at centres across Canada for “oligo-progression” – to determine whether the use of SBRT while on sunitinib can treat rogue tumours and extend time on treatment.
  1. DART study – goal is to see whether the activity of a VEGF-TKI (in this case axitinib/Inlyta) can be extended by adding an ALK1 inhibitor (dalantercept). This study is accruing in 30 centres across the U.S. See here:
  1. Sarcomatoid RCC & Poor Risk RCC – Dr. Rana McKay presented positive findings for a trial of sunitinib plus gemcitabine for those with rapidly progressive disease. (Important study for those with sarcomatoid >10% in their pathology). Gemcitabine is a chemotherapy agent that can improve disease control in particularly aggressive disease such as sarcomatoid. Other trials with chemotherapy are underway for this subset of patients.
  1. Thomas Powell (UK) presented on a new TORC1/TORC2 P13K inhibitor (AZD2014) that proved to be inferior to everolimus (Afinitor). This trial was closed quickly as soon as the data began to emerge and patients were switched to the standard of care early. Dr. Powell made a sincere and heart-felt thank you to the patients and their families for taking part.

Some Take-Home Messages:

Overall, I wish that more patients could see the room packed with hundreds of oncologists discussing and learning about kidney cancer. Absolutely no one is resting with what we have available today:

  • We need to know more about active surveillance vs treatment start, individualized dosing and quality of life with current treatments
  • We need to better manage toxicities (side effects) of current drugs and especially with immuno-oncology treatments
  • We need biomarkers to direct therapy & better drugs that will prevent recurrence.

Will conclude with some words from Dr. Tony Choueiri: “We do all of this for our patients. I do firmly believe that they deserve a cure.”

For more information on the entire conference, please see here:

What are the Top Ten Research Priorities in Kidney Cancer?

Citizen Involvement in Kidney Cancer Research Prioritization

Last Friday a group of volunteers (survivors and caregivers) from Kidney Cancer Canada had the distinct privilege of participating in a unique and innovative process to help shape the future of kidney cancer research in Canada. This was a unique experience for us all — and truly innovative for setting research priorities according to real citizen/stakeholder input. As those most affected and most in need of research outcomes, we have found our way to the decision-making table thanks to the Kidney Cancer Research Network of Canada.

The process we followed was a methodology from the James Lind Alliance in the UK that seeks to put the patient/caregiver in the very centre of research prioritization – to ensure that researchers will focus on finding answers to questions that will make the most difference to people with kidney cancer. Our understanding is that this is the first time the JLA process has ever been used in cancer of any type.

Background – The Survey

Some of you will remember a survey that we asked patients/survivors/caregivers to complete. In total, 225 surveys were completed from 135 patients, 35 caregivers, and 60 healthcare professionals. The survey sought to identify areas of “uncertainty” in kidney cancer treatment or care. In total, 2004 uncertainties (potential projects) were identified. (Other surveys for other diseases had yielded a few hundred… this was certainly a flag that MUCH WORK needs to be done in kidney cancer!)

From this list a steering committee worked to group items and eliminate any for which research is already well established. From 2004 items, they reduced this list to 246 priorities, and then with input from others, down to 29. Our job on Friday Feb 5th was to examine the final 29 and agree upon the top 10. How hard could that be?

IMG_20150205_120705 JLA PSP

The group who met to battle it out included nurses, oncologists, survivors, caregivers and facilitators and observers from across Canada. We all came to the meeting having already ranked the top 29 ourselves, but were assured by facilitator Dr. Andreas Laupacis that “your top 10 will not be the final top 10” – this was to be an exercise in listening, respecting different perspectives, and finding common ground.

Over the course of the day we worked to understand why some individuals and groups had ranked something very high while others had ranked the very same item so low. How were we interpreting the research area differently? Some items shifted a great deal as participants shared where they thought research was needed.

You’ll see from the list below that we ranked three items as equal Number One priorities – each of these items has a very compelling case for more research and so we felt no need to rank within that three. You might think of great research topics that aren’t listed here – chances are that they WERE in the top 29 – they were all great topics and we have ranked items from 11-29 to come back to.

 What’s Next?

The Kidney Cancer Research Network of Canada (KCRNC) will now be seeking research funding for specific projects that address the top 10. Together with the KCRNC, Kidney Cancer Canada is committed to supporting research in priority areas that are important to us all.

Here are the top 10 Priorities for Kidney Cancer Research. Please help us fund this important work ahead! All of our donations designated for Research go to support these initiatives. Kidney Cancer Canada is pleased to issue a charitable receipt — we are for the patients, by the patients. To donate, click here.

Thank you. Comments, feedback welcome as always!

Deb Maskens
Director, Medical Relations, Kidney Cancer Canada

Top Ten Research Uncertainties in Kidney Cancer

  1. What are the treatment options for patients with advanced non-clear cell renal cell carcinoma (kidney cancer)?


  1. Are there measurable, biological indicators (biomarkers) that can be used to predict the response to a treatment?


  1. Are there measurable, biological indicators (biomarkers) for the detection of kidney cancer?


  1. Can we develop better therapies that use the immune system to fight cancer (immunotherapies) including biomarkers, immune markers of patient, tumour characteristics and response?


  1. What indicators can be used to predict the development and progression of metastatic kidney cancer?


  1. How can psychological, emotional and social support be best given to patients and their families?


  1. Can decision making tools be developed that help both patients and healthcare providers to make treatment decisions in advanced/metastatic disease?


  1. What is the role and criteria for using biopsy in the management of kidney cancer?


  1. What is the impact of regional funding and access to treatment on outcomes of kidney cancer patients?


  1. What causes kidney cancer (including risk factors and dietary causes)?

Updates from IKCS (Kidney Cancer) Medical Symposium

Hello everyone,

Thanks to support from Kidney Cancer Canada and the International Kidney Cancer Coalition, I had the chance to attend an in-depth medical meeting specifically on kidney cancer. This meeting hosted by the Kidney Cancer Association in the United States is expensive for us to attend, but offers great value that we can share with our patient communities. For those of you on Twitter, you may have seen some of the tweets and photographs of slides as the meeting was unfolding.

Disclaimer: As always, these are my notes as a patient advocate. Any error or omission is entirely mine. If you have questions about how any of this applies to your specific case, please ask your doctor. If you have questions about what I’ve written here, please feel free to respond with a comment. 

Risk Factors for RCC (Dr. XiFeng Wu, Dr Mark Purdue – Toronto):

Known risk factors for rcc continue to be: smoking, obesity, hypertension, and exposure to certain industrial chemicals (solvents, cadmium, etc.). In addition researchers are finding that low physical activity increases risk (every 15 minutes of moderate activity reduced mortality). More: Wen et al, Lancet 2011

RCC in Young People (Young = under 46 when diagnosed)

Dr. Brian Schuch suggested that those diagnosed under 46 should be managed differently (they are “zebras not horses”). For example, rcc in younger patients might have greater propensity to recur in lymph nodes. Of course the risk of CKD (chronic kidney disease) is also higher given these patients have many more years ahead of them for it to manifest — so preserving kidney function is important.

Note: in Canada, we have a Genetics Screening Guideline that applies to all kidney cancer patients diagnosed under age 46. Please see our website or get in touch directly for a copy.

Surgery – Why is Partial Nephrectomy still Under-Utilized?

Dr. Timothy Masterson commented that the decision to proceed with a radical nephrectomy is often based upon the surgeon’s experience and comfort level: “Need to emphasize PATIENT factors and not SURGEON factors when making treatment decisions”. Again, saving kidney function (whenever possible) is important…

Surveillance After Nephrectomy — How long is long enough?

Dr. R. Houston Thompson studied two American guidelines (AUA and NCCN) to determine whether the surveillance recommendations capture recurrence following nephrectomy. Results indicated that one third of recurrences were missed. To capture 90% of recurrences, follow-up would need to be a minimum of 10 years. (More: JCO publication, currently in press).

Non-Clear Cell RCC (Dr. James Hsieh, MSKCC New York)

Unfortunately there are no standard of care options for non clear cell patients and now (as a group) these patients fare worse than clear cell patients. Research in non-clear cell rcc is significantly underfunded. For example, with chromophobe rcc, only 5-10% of patients develop metastases, but for those 5-10%, no one knows how to treat… We need consortiums to study these rarer subtypes such as the RKCCRC – Rare Kidney Cancer Clinical Research Consortium. In the meantime, all guidelines agree: the preferred option for non-clear cell is a clinical trial — may take some work to find a trial, but see below.

  • Papillary – Dr. Laurence Albiges stressed that Papillary needs deeper reclassification. Type 2 is more challenging. Need to be aware of hereditary syndromes (HLRCC, HPRCC) and delve more deeply into papillary cases.
  • Translocation RCC – Dr. Gabrief Malouf presented this rare type that constitutes 1/3 of all pediatric rcc cases and 15% of rcc diagnosed under age 45 years. Can present as clear cell, papillary, or mixed.)
  • Renal Medullary Carcinoma – Dr. Jianjun Gao — another rare subtype, almost exclusively young African Americans with sickle cell trait. Tough disease to treat. May be responsive to immunotherapy.
  • Sarcomatoid — Dr. Ari Hakimi quoted that 5-8% of rccs had sarcomatoid pathology (usually clear cell but not all). Said the percentage of sarcomatoid differentiation may be relevant. Called to re-classify these tumours as a distinct entity.

Clinical Trials: Look for trials with MET inhibitors, with immune checkpoint inhibitors, trials that accept ALL mrcc subtypes.


Immunotherapy or TKIs as Front-Line Therapy for mRCC?

Dr. Michael Atkins advocated for front-line immunotherapy since it meets patients goals and offers a chance of durable disease control or potentially a cure. Stressed that TKIs were still active after immunotherapy or immuno-oncology (IO).

Arguing against: Patients need to be aware of the toxicities, especially with IO combinations saying “we know better how to manage TKIs” and that the “median patient” is still going to do better on TKIs.

Interesting quote: tells patient “I don’t care how MUCH your tumours shrink. I care about how LONG they stay under control!”

Treatment Management – Getting to the Right Indivdualized Dose

Concern expressed that many patients may not be on the best individualized dose for them. For example, for Sutent in the U.S., 50% of patients seen by community (general) oncologists are down-dosed. Only 20% of patients seeing a kidney cancer expert are down-dosed given greater experience in individualizing dosing and managing side effects

Side Effects:

— Dr. Monty Pal suggests an interventional study on using probiotic supplements for diarrhea caused by TKI drugs. (Note: I will spare you details of his diarrhea study to date…)

Notes to patients on treatment : we’ve long known that Grapefruit juice/fruit was to be avoided. Did you also know to avoid: Starfruit, Papaya, and Pomegranate as well? (This from Laura Wood, RN at the Cleveland Clinic).


Dr. Bernard Escudier was honoured for a lifetime of contributions to kidney cancer. He recalled back in 1985 when it was believed that IL2 was a miracle drug that was “going to cure all cancers”. Has turned out to be more difficult than that, but is encouraged to see so many patients doing well for so many years. But, the goal remains:


I think we’d all agree. Thanks for reading. Comments/questions welcomed.


How do patients choose between medications for kidney cancer?

New Global Survey — Open to kidney cancer patients of all stages. We welcome all Canadian patients to participate!

Since 2006, a number of new medications have become available for kidney cancer. In most situations, patients have a choice between medications and make the choice that is best for them as an individual in consultation with their oncologist.

Kidney Cancer Canada is participating in a global study to determine how patients take medication side effects into consideration when making treatment choices. Questions are designed for patients to consider hypothetical medications with different types of side effects for comparison.

If you are a kidney cancer patient, we invite you to participate in this online survey. The survey takes about 20 minutes to complete and will be open until October 20, 2014.

Please note: Kidney Cancer Canada has received a small grant from Pfizer Inc. in the U.S. for our assistance in customizing this survey for the Canadian context. For your participation in the study, Kidney Cancer Canada will receive a $20 donation for each respondent. All responses will be confidential. There is no obligation to participate. We look forward to sharing the results with you and comparing those results with other countries also participating in the study.

To participate, please click here and select either Canadian English or Canadian French.

If you have any questions about this new survey, please feel free to contact us at:

Thank you.

p.s. And for those who have not yet had the chance to tell us what you think kidney cancer research priorities should be, that 10-minute survey for patients and caregivers is still open and looking for your input. Please see blog post immediately below…


Social Media Disclaimer:

“Please note that the privacy and confidentiality of content (text or pictures) shared on social media platforms is not guaranteed. Content may be forged, forwarded, kept indefinitely, or seen by others using the internet whether you share publicly to everyone or privately to specific people. Do not use social media to discuss information you think is sensitive. While you may share this information with a select group of people, someone in your networks may share it more widely without your consent.”


What are the Unanswered Questions About Kidney Cancer?

(This blog posting is courtesy of the Kidney Cancer Research Network of Canada (KCRNC), a national research group that is uniquely focused on kidney cancer. KCRNC is jointly supported by our charity, Kidney Cancer Canada, along with the Canadian Institutes of Health Research (CIHR) and the Kidney Foundation of Canada.)

What are the Research Priorities of Canadian Kidney Cancer Patients, Caregivers and Clinicians?

We Need Your Input!

As a patient or caregiver who has had personal experience with kidney cancer, you are uniquely qualified to provide input to the Kidney Cancer Research Network of Canada. Please take a moment to provide your input. We appreciate your time and your valuable contribution to moving kidney cancer research forward. Thank you.

Why Does Priority Setting in Kidney Cancer Research Matter?

As you may be aware, kidney cancer is relatively under-researched in Canada and internationally. Also, the views of patients, caregivers and healthcare providers about what should be researched may not be reflected in the decisions about what is researched. Given scarce research resources, the prioritization of research studies of kidney cancer is even more important.

The Kidney Cancer Research Network of Canada has now established a priority setting partnership  for people with a diagnosis of kidney cancer. Our goal is to identify the top priorities for kidney cancer research. This is an important step in raising awareness of the issues and then in helping us secure the funds to start tackling them.

What is Involved in a Priority Setting Partnership?

This partnership follows guidelines set out by the James Lind Alliance, a not-for-profit organization in the UK. The underlying principle is to provide an equal voice to patients, their caregivers and the health professionals who care for them in setting research priorities about the disease that they live with every day.

As a first step, we have developed a survey to gather input. This survey is available online at until November 30, 2014 for you to complete.

The responses will then be sifted and sorted, a process which will be overseen by a steering group of patients, caregivers and healthcare providers. In this way about 30-40 unanswered questions will be taken forward for final consideration.

The final selection of the top 10 priorities will take place at a workshop in February 2015. After that, the findings will be distributed to our key stakeholders (patients/caregivers and their healthcare providers) and beyond.

What Can You Do?

We are working hard to ensure our survey reaches all those affected by kidney cancer. Please help us to do this by letting others know about this important project so that we hear the views of as many patients, caregivers and health professionals with experience of kidney cancer as possible. Please help us spread the message.

If you are interested in finding out more about this work or participating in some way, please visit our website – .


Disclaimer for Social Media

“Please note that the privacy and confidentiality of content (text or pictures) shared on social media platforms is not guaranteed. Content may be forged, forwarded, kept indefinitely, or seen by others using the internet whether you share publicly to everyone or privately to specific people. Do not use social media to discuss information you think is sensitive. While you may share this information with a select group of people, someone in your networks may share it more widely without your consent.”