Highlights from the 4th International Kidney Cancer Coalition Conference

In the first week of April, the International Kidney Cancer Coalition (IKCC) held its 4th Expanding Circles conference in Amsterdam. The meeting brought together kidney cancer patient advocates from all over the world to discuss current and future treatments, best practices and how to improve the outlook for kidney cancer patients globally.

Professor Peter Boyle, author of The State of Oncology, presented data on the global burden of cancer and showed that 5 year survival rates for a number of cancers have increased. For example, prostate cancer 5 year survival rates have increased ten-fold from 8% in the early 1940s to 82% in 2007 (De Angelis et al., 2014). Professor Boyle highlighted the fact that increased survival is not due to a single magic bullet, but to the accumulation of small, incremental improvements over the past 60 years.

Professor Anne Merriman, a nominee for the 2014 Nobel Peace Prize, spoke about her work leading Hospice Africa (Uganda). Before the 1990s, access to pain medicines was difficult in Africa, rendering palliative care impossible. The Merriman Model means morphine can be made up near the patient and taken orally, allowing cancer patients to have a painless, dignified death at home surrounded by their loved ones.

Dr Daniel Heng presented an update on targeted therapies. In the last seven years, five VEGF inhibitors (Sunitinib, Sorafenib, Pazopanib, Axitinib and Bevacizumab) and two mTOR inhibitors (Temsirolimus and Everolimus) have been approved to treat kidney cancer. Further systematic trials are required to determine the optimal order of targeted treatments, particularly for second and third lines of therapy. However, retrospective analysis of data from the International metastatic Renal Cell Carcinoma (mRCC) Database Consortium (IMDC) shows that patients who receive more lines of targeted therapy live longer (Ko et al., 2014) and that targeted therapy leads to doubled overall survival than interferon therapy, demonstrating that the prognosis for patients with mRCC is improving.

Dr Axel Bex presented the surgical perspective of how kidney cancer treatment is changing as surgeons tend towards ablative and nephron sparing surgeries. Neoadjuvant therapy, where pre-operative targeted therapy is used to downsize or downgrade a tumour in order to improve surgical outcomes, was also discussed. Early data from a trial testing the efficacy of neoadjuvant Axitinib in locally advanced RCC indicate that tumour volume does reduce and that this might be an effective approach.

Additionally, Dr Eric Jonasch introduced the audience to the hereditary kidney cancer syndromes, including Birt-Hogg-Dubé syndrome; Dr Marry van den Heuvel-Eibrink summarised the symptoms, causes and treatment options for paediatric kidney cancers, including Wilms’ Tumour; and Professor Kerstin Junker presented her work on identifying prognostic biomarkers for kidney cancer, including her team’s discoveries that certain genetic duplications or losses and miRNA expression profiles correlate with increased metastasis (Heinzelmann et al., 2014, Sanjmyatav et al., 2011).

For many cancers, the UK has higher cancer mortality rates than the European average (De Angelis et al., 2014), which is thought to be partly due to patients from lower socioeconomic groups waiting longer to seek medical advice. James Brandon, from Public Health England spoke about the “Be Clear on Cancer” campaign to raise awareness about kidney and bladder cancer in the UK. Two television adverts were produced, one for men and one for women, along with poster and radio campaigns, urging people to visit their GP urgently if they notice blood in their urine. Tracking results from an earlier equivalent campaign for colorectal cancer showed that more people visited their GP and the number of appropriate referrals increased.

On the last day, 5 speakers from patient organisations shared information and experiences working on specific projects during the “Sharing Best Practices” Session. Denis Brezillion, from ARTuR in France, informed the audience how his volunteer-led organisation run a conference for 200 patients every year in Paris, while Berit Eberhardt, from Das Lebenshaus in Germany,  urged all patient advocates to “beg, borrow and steal” good ideas from other organisations, and to recombine them to make better patient literature. Following on this theme, Lizzie Perdeaux from the Myrovlytis Trust/ BHD Foundation presented information on health literacy and how this helped us design the new Introductory BHD Pamphlets. Luciana Holtz of Instituto Oncoguia described how, although heart disease is the biggest killer in Brazil, 59% of Brazilians think that cancer is the most common cause of death. As a result, many fear cancer and do not adhere to screening programmes. In 2013, Luciana’s team ran a successful awareness campaign on social media to spread the message that “cancer is no longer a death sentence, but you have to do your part.”

Finally, Deb Maskens from Kidney Cancer Canada introduced the Cancertainty For All campaign. In 6 of Canada’s 10 provinces, intravenous cancer treatment starts quickly and is free. However, the route to access oral medication is laborious and time-consuming, and patients have to cover much of the cost themselves. Kidney Cancer Canada formed a coalition of over 30 Canadian cancer charities and produced an infographic and video to raise public awareness of this issue.

The conference was a wonderful opportunity to meet patient advocates from all over the world, and to hear about some of the inspiring projects helping kidney cancer patients today. The outlook for kidney cancer patients is one of great hope, with targeted therapies already having doubled survival times, and with several promising treatments on the horizon, such as dendritic cell immunotherapy, anti-PD1 therapy and Cabozantinib.

  • De Angelis R, Sant M, Coleman MP, Francisci S, Baili P, Pierannunzio D, Trama A, Visser O, Brenner H, Ardanaz E, Bielska-Lasota M, Engholm G, Nennecke A, Siesling S, Berrino F, Capocaccia R, & EUROCARE-5 Working Group (2014). Cancer survival in Europe 1999-2007 by country and age: results of EUROCARE–5-a population-based study. The lancet oncology, 15 (1), 23-34 PMID: 24314615
  • Heinzelmann J, Unrein A, Wickmann U, Baumgart S, Stapf M, Szendroi A, Grimm MO, Gajda MR, Wunderlich H, & Junker K (2014). MicroRNAs with prognostic potential for metastasis in clear cell renal cell carcinoma: a comparison of primary tumors and distant metastases. Annals of surgical oncology, 21 (3), 1046-54 PMID: 24242678
  • Ko JJ, Choueiri TK, Rini BI, Lee JL, Kroeger N, Srinivas S, Harshman LC, Knox JJ, Bjarnason GA, Mackenzie MJ, Wood L, Vaishampayan UN, Agarwal N, Pal SK, Tan MH, Rha SY, Yuasa T, Donskov F, Bamias A, & Heng DY (2014). First-, second-, third-line therapy for mRCC: benchmarks for trial design from the IMDC. British journal of cancer PMID: 24691425
  • Sanjmyatav J, Junker K, Matthes S, Muehr M, Sava D, Sternal M, Wessendorf S, Kreuz M, Gajda M, Wunderlich H, & Schwaenen C (2011). Identification of genomic alterations associated with metastasis and cancer specific survival in clear cell renal cell carcinoma. The Journal of urology, 186 (5), 2078-83 PMID: 21944119

 www.bhdsyndrome.org – the primary online resource for anyone interested in BHD Syndrome.

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