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.



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