UPDATE
n°161 | April, 2022
In this issue:

Can using the C-word be unhelpful?

Low grade tumours should not to be labelled as ‘cancer’ to reduce patient anxiety, says new paper
22 Apr 2022

New resources for Ukrainian refugees with cancer

Vital information on sources of support available in different countries
12 Apr 2022

New active surveillance webinar discusses psychological impacts

Europa Uomo’s fourth AS event summarised key findings from experts and patients
31 Mar 2022
Europa Uomo News

Europa Uomo Board meeting

Last Thursday, April 28, 2022 our Europa Uomo Board met for an in-person meeting in Amsterdam where the General Assembly, the Annual Report 2021-2022 and the Strategy of EUomo for the next years were the main points discussed.

Europa Uomo General Assembly 2022

With 45 registered participants and 1 country represented by proxy, we have a good attendance for our first in-person GA meeting in Leusden, The Netherlands in 3 years.

More information will be available closer to the meeting date.

 

Prostate Cancer Support Groups after Covid-19

By FEFOC FUNDACIÓ, our Spanish member organisation

FEFOC (private not for profit Foundations sited in Barcelona, www.fefoc.org), started its prostate cancer support groups in 1998. Since then on it has been one of the most rewarding experiences for us, both patients and professionals. The number of attendants was growing up, not easily because some patients were reluctant to share their problems and open their hearts to others. On the other hand, some urologists were not very happy with our task.

Nevertheless, the things were going on quite well until Covid19 appeared in our lives. During the first year of pandemic few patients came to the group. Online activities and telephone consultations were the main substitutes. Second year was a little better, but we never reached the previous level of face-to-face participants.

Right now, in Spain the authorities tell us the epidemic is near to become a soft disease, the number of hospitalized patients is going down and many patients have few symptoms, like a flu.

It was then that we open gladly our doors to the Group members but, to our surprise, quite painful surprise, the fear to Covid-19 was very present on the heads of many of them. Those patients who do not come again they confess the true to us. Trying to resolve the situation we phone them, asking them to come again, month after month. A lot of excuses (we can write an article about), but few attend again the sessions. More or less a third part of the previous numbers.

So, we are going to resume our task locking for new patients. The old one seems definitively lost.

What is the experience as regards in other Europa Uomo countries? If we share different experiences, we could find solutions for the new era post-Covid 19.

 

Translation of our Europa Uomo website

In case you need to help local prostate cancer patients who does not speak English, our website has a translation tool which translates all the information on our website in different languages (also in Ukrainian in case you come into contact with Ukiranian prostate cancer patients).

When you open our website www.europa-uomo.org you will see the ‘Translate’ bottom in the top center.

 

Items of Interest

PIONEER WP2 - Patient survey regarding communication

PIONEER WP2 are conducting a survey to better understand the communication between patients diagnosed with prostate cancer and their treating physician. The survey is based off the EORTC OLQ-COMU26 and should not take patients any more then 5-10 mins to complete. The results of the survey will contribute towards answering part of one of PIONEER’s prioritised research questions. The survey is translated into Spanish, German, French, Italian and Dutch.

 

The survey links are:

English

https://www.surveymonkey.com/r/SP6V2XF

Spanish

https://www.surveymonkey.com/r/XTVZHB2

German

https://www.surveymonkey.com/r/XT9DXXW

French

https://www.surveymonkey.com/r/M9CYR3Z

Italian

https://www.surveymonkey.com/r/M9JFGBS

Dutch

https://www.surveymonkey.com/r/XTY2GMT

 

You can find some more information on PIONEER and WP2 here.

ASPI webinar 'Your Voice in the future of Active Surveillance'

Last April 22, ASPI (Active Surveillance Patient International) organised the webinar ‘Your Voice in the future of Active Surveillance’. This session was endorsed by, among others, Europa Uomo.

Next to leading researchers as Dr. Laurence Klotz (University of Toronto) who named AS, Drs. Chris Bangma and Ola Bratt, who pioneered AS in Europe, and Drs. Peter Albertsen, and Timothy Witt, who pioneered AS in the United States, our own vice-chairman, Erik Briers, was one of the panelists.

You can see the recorded webinar here.

 

A next webinar is planned for May 31, 2022

Annual Report of the European Patients' Forum (EPF)

Since last year (2021), Europa Uomo is a full member of the European Patients’ Forum.

Our treasurer, Ioannis Vanezos, attended their 2022 Annual General Meeting last April 23. You can read their Annual Report 2021 ‘A strong patients’ voice to drive better health in Europe‘ here.

AnCan Webinar: 'Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer'

AnCan is presenting a webinar, entitled “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer”, 8-9:30 p.m. Eastern on May 31. Register at: https://bit.ly/3KkxcfC

That’s 2 a.m. CET. But if you register, you will be notified when the video is available.

This webinar features Dr. Stacy Loeb, professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center, and Dr. Justin Gregg, assistant professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston.

Dr. Gregg will speak about his research on diet. Dr. Loeb will speak about her research on a plant-based diet, sleep, and exercise.

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All previous issues are available on website: www.europa-uomo.org/newsletters/