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IN THIS ISSUE:
Quality of Life Responses Climb Rapidly Towards 2000 Mark
 WECAN Meets to Review Patient-Related Issues and Prepare for a Retreat Meeting in mid-October
A Second Opinion
Prostate Cancer Risk May Be Increased in Fathers Using Assisted Reproduction
Getting Along for 50 Years

Somewhere, somehow
Hey Buddy, Have You Checked Your Breast Lately?

Quality of Life Responses Climb Rapidly Towards 2000 Mark

Forty three days since launch and the total of responses received as of 3 October is 1861.  

The sudden jump to 445 responses by Norway means it has overtaken Sweden at 317 which is still ahead of France at 212 and The Netherlands at 207. The survey is still open for another 5-6 weeks, so if you have a prostate cancer diagnosis and have not yet taken the survey please do so now. If you know anybody who had a prostate cancer diagnosis at any time please send them the link and ask them to take the survey. 
* Countries such as Armenia, Cyprus and Iceland
 PLEASE take the survey use this link:
 https://www.qualityoflifesurvey.co/wix/p1874284546.aspx


Anyone living in Europe who has had a prostate cancer diagnosis may take this survey. The  survey can be taken regardless of when the treatment took place or even if there was no treatment, also both active surveillance and watchful waiting are regarded as treatment. You do not have to be a member of one of the Europa Uomo affiliated prostate cancer support organisations in 27 European countries.

 

WECAN Meets to Review Patient-Related Issues and Prepare for a Retreat Meeting in mid-October

ESMO gouges patient group for €500 for a meeting room for 90 minute meeting.
The various European and world Patient Groups in WECAN had a brief meeting at ESMO, in Barcelona. Europa Uomo’s Chairman André Deschamps and Vice-Chairman, John Dowling attended.  

ESMO ‘facilitated’ a meeting room in an hotel beside the main conference centre, but at a price.  They charged the patient organisation the extortionate sum of €500 for the room, without projector and without hot beverages, and without as much as a morsel for anybody who had skipped breakfast. Not good enough ESMO – think again!

The meeting heard reports of slow progress with regard to getting pharma companies to incorporate agreed principles into operational practice. Various suggestions were made as to how this might be progressed. The heads of the organisations will consider these suggestions at their Retreat next week.

There was a brief review of the training programmes run in Frankfurt last July. Nothing is ever perfect, especially on its first go, but the overall impact appeared to be positive. It was agreed that a further training event should be organised. This will be finalised at the WECAN Retreat next week. The meeting also reviewed and amended the agenda for the retreat next week which will be attended by heads of organisations affiliated to WECAN.

A Second Opinion

Background
Thráinn Thorvaldsson has written earlier about his experience of the SmartStart WECAN training for Patient Advocates. In his short story told here, we see that he made very productive use of his visit from Iceland to Frankfurt.

In a small community where I live, it is not easy to ask for a second opinion regarding prostate cancer diagnose as experts and equipment are limited. I was diagnosed with prostate cancer 14 years ago and chose what is called Active Surveillance. My MRI this spring was diagnosed as serious and a DaVinci surgery was recommended. 

On a Training Course
I wished to have a second opinion. As I was visiting Frankfurt to attend the WECAN SmartStart Training course, I approached the University Hospital in Frankfurt for an MRI scan and biopsy. Professor Dr. Vogl was kind enough, with short notice, to take me through a guided biopsy as such sampling is not available where I live. The results were different from the diagnosis in my home area and not as serious as my home specialist suggested. However, it was still recommended to me to have a treatment. I'm now getting a much milder cancer treatment than previously recommended. 

Just One More Question…
Before deciding on treatment, I had many questions to ask Dr. Vogl who showed me incredible patience and answered my questions even during evenings or on weekends. It is obvious that Dr. Vogl cares for his patients and so do his excellent staff. The warm attitude of Dr. Vogl and his team makes patients feel comfortable in their difficult situation. 

Peer to Peer Advice
Before taking the final decision about a treatment I contacted a few men who had been through the same kind of treatment to learn about their experience. Those conversations were vital in my decision making.
 
Þráinn  Þorvaldsson
[Thráinn Thorvaldsson]


 

Prostate Cancer Risk May Be Increased in Fathers Using Assisted Reproduction

Fathers who used intra-cytoplasmic sperm injection or in vitro fertilization had a 64% and 33% higher risk for prostate cancer, respectively, than men who conceived naturally.
Men who achieved fatherhood through assisted reproduction are at increased risk for early onset prostate cancer (PCa), according to new study results published in The BMJ. This report is based on reporting of the study by Renal & Urology News (see link below).

Nearly 1.2 million men in Sweden fathered a first-born child during 1994 to 2014, including 97% by natural conception, 1.7% by in vitro fertilization (IVF), and 1.3% by intra-cytoplasmic sperm injection (ICSI). More men utilizing IVF and ICSI (0.37% and 0.42%, respectively) were diagnosed with PCa than men who fathered children naturally (0.28%). ICSI and IVF were associated with a significant 64% and 33% increased risk of PCa, respectively, compared with unassisted conception, Yahia Al-Jebari, a PhD candidate at Lund University in Sweden, and colleagues, reported.

BMJ Article:
https://www.bmj.com/content/366/bmj.l5214/article-info  

Renal and Urology News Report: https://www.renalandurologynews.com/home/news/urology/prostate-cancer/prostate-cancer-may-be-increased-in-fathers-using-assisted-reproduction/?utm_source=newsletter&utm_medium=email&utm_campaign=run-update-hay-20191003&cpn=uro_all&hmSubId=d1PGWU1AZwI1&hmEmail=hkjuWacer5sHrH2BdwLZ3BDkyAcl-gSf31LP7LVx8w01&NID=&c_id=&email_hash=edf1c900487b7cedf6c636775500adfd&mpweb=1323-69747-922184


 

Getting Along for 50 Years

The church held a Marriage Seminar and the priest asked Luigi, as his 50th wedding anniversary approached, to share some insight into how he managed to stay married to the same woman all these years. Luigi replied audience, "Well, I tried to treat her well and spend money on her. But the best thing I did was take her home to Italy for our 20th anniversary." 
The priest said "Luigi, you are an inspiration to all husbands here today. Please tell the congregation what you plan for your wife for your 50th anniversary." Luigi proudly replied "I'm gonna go and bring her back home”.

 

Somewhere, somehow.....

Lincoln, a young man, wanted to get his beautiful blonde wife, Lucy something nice for their fifth wedding anniversary. So, he decides to buy her a mobile phone. She is all excited, she loves her phone and he explains all the features on the phone.
The next day, Lucy goes shopping. Her phone rings and its Lincoln: "Hi honey", he says "how do you like your new phone?"
And she replies: "I just love it, it's so small and your voice is clear as a bell but there's one thing I don't understand though".
 "What's that, baby?" asks the husband.
 "How did you know I was at Woodies?” asked Lucy.


 

Hey Buddy, Have You Checked Your Breast Lately?

Insights into Male Breast Cancer
Overall survival was significantly worse for men with breast cancer than for their women counterparts.

Clinicians have been taught, with some caveats, that treatments and outcomes are very similar between men and women with breast cancer. However, recent studies have called this assumption into question.

This recent, large cohort study used data to compare mortality and methodologies between 16,000 men and 1.8 million women with breast cancer during a 10-year period. 

•    Men were older than women counterparts (63.3 vs. 59.9 years) 
•    Men were more likely to have ductal histology,
•    Men were presenting with higher-stage disease at diagnosis (stage III, 14.0% vs. 8.9%; stage IV, 5.8% vs. 3.8%), ER-positive disease, and higher recurrence score.

Survival Rates 
At a median follow-up of 54 months for men and 60 months for women:
•    Overall survival was poorer for men than women (45.8% vs. 60.4%), 
•    The 3-year survival was 86.4% for men and 91.7%) 
•    5-year survival was even worse for men at 77.6% compared with 86.4% for women.. 
•    Men had more advanced disease and aggressive clinical characteristics, 
•    Men were less likely to received optimal conventional therapy, including endocrine or radiation therapy. 
•    After all factors were controlled for, male sex remained an independent factor associated with a poorer prognosis.
Editor’s Comment: 
We need further research to identify the similarities and differences in the male and female versions of breast cancer. These results suggest that men generally need education about the possibilities of male breast cancer. Further research into biological features of breast cancer and tailored treatments for men with the disease to mitigate the sex-based disparity in mortality. This should be seen as part of the overall situation where certain types of prostate and breast cancers (involving BRC1 and BRC2) have significant implications for familiar cancer risk.

See NEJM Journal Watch Oncology
William J. Gradishar, MD reviewing Wang F et al., JAMA Oncol 2019 Sep 19. 
https://www.jwatch.org/editors/AU1223?editor=William%20J.%20Gradishar,%20MD

Abstract and Article:
 https://jamanetwork.com/journals/jamaoncology/article-abstract/2751525


 

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Editorial & Writing - John Dowling
Production - Anja Vancauwenbergh
Copyright © 2019 Europa Uomo, All rights reserved.


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