Urological Cancer

Prostate Cancer

Prostate Cancer is on the rise and the most frequent cancer in men. In fact, it is the third most common cause of cancer death in men in Europe, with important consequences for healthcare systems. Saving lives and ensuring a high quality of life requires immediate European actions.

The incidence of advanced Prostate Cancer in some countries is likely a reflection of the late detection. The lack of awareness of the need for early detection and in some cases the lack of proper diagnostic tools lead to too late discovery of the disease.

The European Cancer Patient Coalition is a co-organiser of European Prostate Awareness Day, and a co-author of the Policy Paper on PSA Screening for Prostate Cancer and the European White Paper on Prostate Cancer.

Kidney Cancer

Although kidney cancer is a relatively rare cancer, it is the most lethal of the genitourinary cancers. As the population ages and the prevalence of known risk factors such as obesity (excess body weight) and hypertension (high blood pressure) increases, we predict a growing burden of kidney cancer. The International Agency for Research on Cancer (IARC) projects a 22% increase worldwide by 2020.

Kidney cancer is of particular significance within Europe as it has among the highest incidence in the world, particularly in Eastern Europe. In 2012, the Czech Republic showed the highest inci- dence rates (34.9/100 000 in men and 15.0/100 000 in women). The incidence rates have been slightly increasing over time in some European countries and have remained stable in others.

The European Cancer Patient Coalition is a co-author of the Scientific & Policy Briefing on Kidney Cancer, produced in collaboration with the European Association of Urology, the International Kidney Cancer Coalition, the European Cancer Leagues, the Joint Action on Cancer Control, the European Alliance for Personalised Medicine, the European Mens Health Forum, and Europa Uomo.

Bladder Cancer

Bladder Cancer Awareness Month

The month of May is bladder cancer awareness month. Bladder cancer is the fifth most common cancer in the Western world and the second most frequent malignancy of the urinary tract after prostate cancer. With more than 151,000 people being diagnosed with bladder cancer in Europe each year, more work needs to be done to reduce the burden of bladder cancer on patients. Based on such disturbing statistics and even more alarming prognosis, the bladder cancer awareness campaign is focused on educating, raising awareness, and making sure that bladder cancer is no longer a forgotten disease. Throughout the month of May we share facts, statistics, risk factors and symptoms on social media to raise the profile of bladder cancer.

Social Media Toolkit

The European Cancer Patient Coalition has created a social media toolkit to help organisations, supporters and allies coordinate activities to maximise the power of social media. It contains useful guidance and tools including inspiration on what to post and explanations on relevant tools and suggested activities.

Twibbon Campaign

Show your support for Bladder Cancer throughout the month of May by adding Bubbles to your Twitter or Facebook profile picture using this Twibbon.

Thunderclap Campaign

The European Cancer Patient Coalition hosted a very successful Thundeclap Campaign in May 2017, with a social reach of 336,262.

Bubbles for Bladder Cancer

Bubbles for Bladder Cancer was an initiative started by Fight Bladder Cancer. Bubbles are a beautiful and poignant reminder of those who have lost their fight with this awful disease and used throughout this campaign to symbolise standing together with those currently undergoing treatment and everyone who is affected by bladder cancer.

Help get Bladder Cancer heard by using #BladderCancer and re-tweeting supportive and informative messages.

At noon on the last Sunday in May we encourage everyone to join the international social media community by sharing pictures of themselves blowing bubbles using the hashtag #BubblesforBladderCancer.

Join your local patient organisation

Australia: Bladder Cancer Australia
Belgium: NeoVida Vlaanderen (NeoBladder Flanders)
Canada: Bladder Cancer Canada
Finland: Syöpäjärjestöt (Finland Cancer Society)
France: Les Zuros: cancer de la vessie (bladder cancer support group)
Germany: BlasenKrebs (Bladder Cancer)
Greece: Ελληνική Ομοσπονδία Καρκίνου (Hellenic Cancer Federation)
Italy: Pazienti Liberi dalle Neoplasie Uroteliali (People free from bladder cancer)
Netherlands: Leven met blaas- of nierkanker (Living with bladder or kidney cancer)
Norway: Blærekreftforeningen (Bladder Cancer Society)
Poland: Polska Koalicja Pacjentów Onkologicznych (Polish Coalition of People with Cancer) and Let’s Win Health Foundation
Romania: Community Health Romania
Spain: Grupo Español de Pacientes con Cáncer (Spanish Group of People with Cancer)
Turkey: Kanser Savascilari (Cancer Survivors Organisation)
UK: Fight Bladder Cancer and Action Bladder Cancer
USA: Bladder Cancer Advocacy Network

Bladder Cancer White Paper

The EU has been quite ambitious in supporting EU Member States in the development of cancer screening programmes supplemented with guidelines for breast, cervical and colorectal cancer. However, not all cancers have been treated equally, and bladder cancer is actually the 5th most common cancer in the western world and the 2nd most frequent malignancy of the urinary tract after prostate cancer. Despite a prevalence for both sexes of 13% in the EU27 with figures from 2012 (IARC), bladder cancer is highly overlooked by decision-makers and the pharmaceutical industry, despite its high prevalence. Moreover, it results in serious morbidity and mortality. Bladder cancer is also a very heterogeneous disease rending research efforts to characterize it very complex and current research funding is insufficient. Health remains a national competence but European coordination in the fight against cancer has shown its added value and much more can be achieved through coordinated activities.

The paper aims to raise the profile of the disease in Europe by describing the various treatment, prevention and diagnosis solutions and guidelines, tackling the disease’s challenges and threats and delineating novel opportunities, in the hope to raise awareness, better educate policymakers and fine-tune bladder cancer policies in the interest of current and future patients and the society in general.

European Cancer Patient Coalition White Paper on Bladder Cancer (English)

European Cancer Patient Coalition White Paper on Bladder Cancer (Italian)

European Cancer Patient Coalition White Paper on Bladder Cancer (Turkish)

Urological Cancers Working Group

In order to better represent the urological cancer patient community, ECPC counts on the expertise and collaboration of urological cancer patient organisations all over Europe. ECPC has established a Urological Cancer Working Group to guarantee that urological cancer patients and patient organisations will be able to contribute to our urological cancer activities.

How to join the Working Group

We strongly encourage urological cancer organisations, as well as ECPC Members and non-member general cancer patient organisations supporting also urological cancer patients to become a member. You may contact info@ecpc.org/ by email stating:

• Your name and function
• Your interest to join and the reason why you want to be involved
• The name and contact details of your organisation

You will receive a confirmation email shortly after your application has been submitted.

Objectives

The key objective of the Urological Cancer Working Group is to give ECPC Members and non-members with an interest in urological cancer the opportunity to formally and directly contribute and collaborate in our urological cancer work.

Urological Cancer Working Group members will also have the opportunity to use the platform to decide on further topics for discussion of interest to urological cancer patients. The aim of the Urological Cancer Working Group is to provide its members and all ECPC Members with a practical and effective instrument to react to the European and national policy challenges related to urological cancer.
Activities
The Urological Cancer Working Group will be responsible for:

• Providing input on ECPC activities during our Bladder Cancer Awareness Campaign and Prostate Cancer Awareness Campaign
• Providing input on ECPC policy and patient education webpages on urological cancer
• Ensuring that ECPC urological cancer activities promote full patient engagement and empowerment
• Contributing to the dissemination of patient information on urological cancer both at national and European levels

Organisation and Composition of the Working Group:

• Every ECPC Member (Full and Associate) and non-members active in urological cancer can join the working group.

• The Urological Cancer Working Group will meet in person once a year in a dedicated meeting preceding the ECPC Annual Meeting. The Urological Cancer Working Group may also meet via teleconference.
• The Urological Cancer Working Group members, or appointed representatives, can be involved by ECPC in other ad-hoc initiatives, when necessary.
• ECPC will ensure the dissemination of the activities of the Urological Cancer Working Group, including all the documents approved by the Urological Cancer Working Group.
• ECPC will offer administrative and policy formulation support to the Urological Cancer Working Group.
• ECPC will provide a private online interaction platform for working group discussions.

ECPC will offer reasonable financial assistance for travel and accommodation to attend the meeting at the ECPC Annual Congress.

Support

The European Cancer Patient Coalition’s urological cancer activities are supported by: