Annual Report of the board 2018/2019

Andre Deschamps
André Deschamps

The last year has passed incredibly quickly. It is already a year since I was elected as chairman of Europa Uomo during the General Assembly in Dublin.

Together with the Board and our members, we have worked hard to grow further the organisation and fulfil our mission of being the voice of men with prostate cancer in Europe.

We have increased our communication efforts through our newsletter and our website. It is possible to read our website in many languages and our newsletter attracts more and more readers. But there is still a lot of work to do.

Europa Uomo’s mission to Armenia

A Europa Uomo representative has met with cancer advocates, health professionals and politicians in Armenia, with a view to encouraging the formation of an organisation for men with prostate cancer in the country.

Europa Uomo Vice Chairman, Stig Lindahl from Sweden, travelled to Artsakh, a northern province of Armenia Northern Armenia, for a meeting on male and female cancers. Travelling with representatives from Europa Donna, the European breast cancer coalition, Stig Lindahl gave a talk on living with prostate cancer in different parts of Europe and met with attending members of the public and doctors.

The next day Stig Lindahl met with the provincial Prime Minister. This was followed by a meeting with doctors, nurses and patient representatives about the possibility of establishing a prostate patient organisation in Armenia.

Stig said: “I discussed next steps with Nvard Kocharyan from Europa Donna and her team, and they are hoping to progress matters in the coming months with a view to making an application to join Europa Uomo in 2019.”

Blue November

Europa Uomo’s Italian member organisation, Europa Uomo Italia Onlus, has promoted the country’s first prostate cancer information campaign, named Blue November.

Educational initiatives promoting men’s health were held throughout Italy during November, raising awareness of the risk of prostate cancer and providing information on how to address it. The campaign focused on information about alternative therapies, the importance of a multidisciplinary approach and the benefits of innovative surgical techniques.

To mark the month, museums all over Italy shone blue lights on significant nude statues of men from Italy’s artistic heritage. Events were held in partnership with the Italian Ministry of Cultural Heritage and Activities.

For more information: www.novembreazzurro.it (also available in English)

Extending survival in patients with oligometastatic prostate cancer

Patients whose cancer returns at multiple sites after treatment – called oligometastatic cancer – are generally thought incurable, but a recent Phase 2 trial found that a highly precise form of radiation can significantly extend these patients’ lives if the spread shows small tumors, and it does this without diminishing life quality.
The approach was tested in patients with up to five metastatic sites, and doubled the time a patient lived without disease progression.

Does ADT lead to a more aggressive type of prostate cancer?

Androgen deprivation therapy (ADT) is an important treatment for prostate cancer.  But a new study has found that it sometimes promotes the transformation of prostate cancer cells into a more aggressive type resistant to treatment.

Article:
http://prostatecancernewstoday.com/2018/09/17/prostate-cancer-become-more-agressive-androgen-deprivation-therapy-study-finds/

Source:
The Journal of Clinical Investigation
https://www.jci.org/articles/view/99397

Annual Report of the board 2017/2018

Chairman’s Note

The adoption of this third Annual Report for Europa Uomo at the 2018 General Assembly near Dublin, will mark the conclusion of my two three-year terms on the Board.  The past six years serving the membership in various offices of Europa Uomo have been both an honour and privilege.  My thanks go to all of you, and your colleagues at home for their support.

When I came onto the Board in 2012, my basic objectives were the same as with my work for Tackle in the UK, viz., to improve the way we work as an organisation and to continue to work so that men get the right treatment at the right time.  As I review these past six years I recall how we struggled, through much debate and confusion, to get our statutes into sufficient order to finally get ourselves legally registered as a Belgian not-for-profit.  I was Treasurer for a time and being then responsible for our funding arrangements, I was concerned at how the lack of a business plan might hamper us, financially and organisationally, in the future.  There were also issues associated with our handling of the transition from the founders who built the organisation since 2003.

The IPCOR project

ipcorMr. David Galvin, Consultant Urologist and lead of the Irish Prostate Cancer Outcomes Research (IPCOR) project, gave a plenary address at the 2018 General Assembly of the European Prostate Cancer Coalition, Europa Uomo, in Malahide, Dublin on June 9th. In front of an audience of patient advocates from all over Europe, as well as Ireland, he described the approach and methodology of the project, which is collecting data from a variety of sources to generate an outcome-based national tumour registry for prostate cancer in Ireland. It is expected that analysis of the data in the registry will be used to inform patient care and decision making long into the future.

The IPCOR project is supported by the Irish Cancer Society and the Movember Foundation. It is part of a global effort called TruNTH Global Registry, funded by Movember, to improve outcomes and the quality of patient care in prostate cancer. It will generate a registry of useful, high-quality data as part of a clinical research study to evaluate the outcomes of different care paths in prostate cancer, and how satisfied patients are with those outcomes. The ultimate aim is to allow clinicians to stop pursuing expensive treatments that have poor outcomes, or treatments that are unacceptable to patients, in favour of more patient-centred care.

New video on prostate cancer diagnosis

A new video by Europa Uomo’s member organisation in the Netherlands, ProstaatKankerStichting.nl, explores diagnosis of prostate cancer and the life-changing effect that it can have on men and their families.

Translated into English, the video contains interviews with patients about how they feel about their treatment, and describes the support offered by patient groups.

“Within 30 seconds of meeting the urologist, he tells you… you’ve got prostate cancer,” says one of the interviewees, prostate cancer patient Johan Weijenberg. “In the space of 30 seconds, your whole world flashes through your mind, and the ground falls out from under your feet. In less than a minute you think, what’s going to happen to my family when I’m no longer around.”

You can access the video also on YouTube https://www.youtube.com/watch?v=E9OdZpEDv9c and contact ProstaatKankerStichting.nl at https://prostaatkankerstichting.nl

 

 

General Assembly 2018, Dublin

prostate
Photo: Secretary John Dowling stands by an inflatable prostate, which was a feature viewed at the conference venue. The inflatable prostate was kindly loaned by Janssen.

Delegates to this year’s General Assembly gathered in Malahide, a seaside town just north of Dublin in Ireland. This year’s GA featured a vigorous debate on a Board proposal to promote a study of Quality of Life in prostate cancer care. The GA was also unusual in the number of Board vacancies to be filled. The outcome was that the two outgoing members were re-elected and two new members were elected.

The meeting also heard a very interesting presentation about the Irish Prostate Cancer Outcomes Study (IPCOR) from Mr. David Galvin, the lead on the study and an eminent urologist in Dublin.

About half the time of the GA was devoted to a series of pilot training sessions. Feedback on the sessions is being evaluated and will be considered by the new Board at its first meeting in July.

Delegates had an opportunity to sample some Irish music and dance at the Abbey Tavern in Howth on the Friday evening and the out-going Chairman, Ken Mastris, tried his best at an Irish jig, whereas Roger Wotton preferred the more sedate tempo of a waltz with the female vocalist. A rousing evening it appears.

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