Q&A with “Faces of Prostate Cancer” Director Keld von Eyben
Keld von Eyben, a documentary filmmaker based in Denmark, received a diagnosis of prostate cancer at age 51. He has since produced a documentary featuring six men who are young prostate cancer survivors: you can see this very moving and honest film here.
PCF asked Mr. von Eyben to share a few thoughts. For context, he offers this note about the Danish health care system: “In Denmark we enjoy free access to hospitals and practitioners, as well as low-cost medicines. However, we are only entitled to the approved standard treatments, which may not be able to conquer aggressive prostate cancer.”
- Why did you decide to make this film, and what is your personal connection to prostate cancer?
When I was 51 years old, I was diagnosed with aggressive prostate cancer and started what has become a 14 years-long battle with the disease. Even though my father had prostate cancer, it never occurred to me that it was a risk factor for me, too. That’s hard for me to understand now, because I was an educated journalist and film producer, who for more than 40 years had produced films about health care, especially within diabetes, obesity and hematology. But cancer was new to me.
I soon realized that my cancer needed intensive treatment to keep me alive, so guided by an excellent oncologist friend, I started traveling around Europe to access the most advanced diagnostics and treatments I could find.
But I was always alone on that journey. No patient organization in Denmark seemed to care much about young men with prostate cancer; they focused on the older majority of these patients.
Even though colleagues and friends suggested that I make a film about my treatments, I never felt that my own story alone would provide an interesting film – being much too self-centric and very difficult to film :-).
But all of that changed in 2019 when I found a Facebook group for Danish men who had all received prostate cancer diagnosis at a young age. The group is called “The Young Prostate Boys” (in Danish, of course). The group has grown rapidly and now consists of 155 men, who typically meets twice a year physically and maintains a very dynamic dialogue on Facebook every day.
The many voices of these men opened my eyes for a way to produce an interesting film. I wanted it to focus on the psychology of having your life turned upside down by aggressive cancer, rather than discuss the many treatment options. How do we cope with the daily fear of death that comes with such a diagnosis?
Five men from the group immediately liked the idea and wanted to participate. Then came spring 2020 and covid19, which closed our country down and halted the project. But by June, covid19 was in such perfect control in Denmark, that it was safe for me to travel in a motorhome around the country, recording the interviews and other footage for the film. I am a one-man crew doing photography, lighting, audio, directing, interviewing – all of it by myself. So it was a very safe production.
I work out of my own company, EybenFilm, which saw my regular business going into a grinding halt because of covid19, so I had plenty time to work on this project: transcribing and logging all the interviews, structuring the story, editing the various chapters. It took me several months to make the story work in the relatively long span of 25 minutes. But with the honesty of people, the drama of their stories, and the quality of the footage, I always felt sure it would become a strong story.
- What did you learn from making the film that you didn’t know before?
When I analyzed the interviews for this film, I saw people face many common issues, so I started writing them down and organizing these findings into what we now call a “Manifesto for better treatment of young men with aggressive prostate cancer.” Let me briefly describe some of the points we made.
If you diagnose aggressive prostate cancer early, it can be cured. Therefore, we need a much safer way than PSA blood tests to diagnose prostate cancer, one that will make screening for the disease among young men a real possibility. That method has to be easy and cheap to perform, and it must work with zero false negatives or positive results.
Men with aggressive prostate cancer need access to the best oncologists in university hospitals. So doctors in the smaller, local hospitals should transfer those patients as soon they’ve been diagnosed. Only then will they have access to the most modern and aggressive treatment necessary for them to survive.
We need to have a much more intensive, open and honest dialogue between the oncologist and the man with aggressive prostate cancer. Because the required treatments will change the life for that person, he needs to be well informed and actively engage in planning the treatment.
A young man with aggressive prostate cancer should have direct access to experimental treatments if he so wishes. That cancer must be recognized as a deadly disease, even though it is mostly invisible for the patient until at a very late stage in the disease. Today, in Denmark, you have to undergo all standard procedures, including two extended chemotherapy series, even though much more effective and less harmful treatments are available in research institutions. These methods have successfully treated thousands of patients and been reported in scientific papers. Still, many patients must pay for such therapies themselves, because they are not yet considered “standard care” for prostate cancer.
Health care professionals should change their view of the young man with prostate cancer. They need to realize that they are facing a man who – until the diagnosis – has had a normal, active life with job career, young wife, small children, house mortgage, daily exercise, etc. etc. The ambition must be to help that man continue this active life by aggressively treating his cancer to keep it a chronic condition for decades. Today, this is possible.
- What is the most important thing you want viewers to take away from the film?
Thousands of people have now seen the film, and the reactions tell me that it fills a vacuum of lack of communication. People wish the film had been available when they received their diagnosis because the brochures and pamphlets they did receive didn’t help them. That warms my heart.
Many of these men become members of our group, which has grown considerably over the last 12 months. These men now understand that they are not the only ones who feel left alone by a health care system which treats your disease but forgets to help you stay alive.
The film also promotes a dialogue between the man with the diagnosis and his family – spouse, children. They are all affected by his diagnosis, but it can be challenging to talk about its consequences.
But most of all, I hope that the film brings hope and encouragement to men with prostate cancer. They need to take an active approach to treat their disease and search for the many advanced new treatments that are now becoming available for prostate cancer. For decades, prostate cancer has had an image of being an “old man’s disease,” with little prestige among health care professionals and researchers. I hope this film might open these people’s creative minds to develop even better diagnoses and treatment methods in the future.