Bernd Zienke was just 21 years old when he was diagnosed with colon cancer. Since then, metastases have been discovered four times. His health insurance company wanted to send him into early retirement – but Zienke wanted to work.
Bernd Zienke from Berlin is now 31 years old – and has been fighting cancer for ten years. “At the time, I had completed my training as an electronics technician for industrial engineering in plant engineering and was just in my probationary period at a new company when the stomach ache started,” he tells FOCUS online. “Initially I thought I had a pulled muscle.” But the pain got worse and worse, so that he suddenly could hardly move anymore.
“I was then completely checked and, among other things, had a colonoscopy – then everything happened very quickly,” he says. The doctors diagnosed him with colon cancer and he had surgery the next day. “It all came out of the blue for me – it was only after the operation that I slowly realized what was actually happening to me,” says Zienke, describing the time afterwards.
After subsequent chemotherapy, the cancer was gone. Unfortunately, it only lasted two and a half years. “During a check-up, the doctors again found tumor markers in the blood,” Bernd continues. A metastasis had formed in the liver. Another severe shock for the young man. He was lucky in misfortune: it was still small, so it could be completely removed surgically; chemotherapy was not necessary.
But this time too the happiness didn’t last long. Zienke then suffered three more relapses – most recently with metastases in the liver, adrenal gland and diaphragm. During a major abdominal operation, 60 percent of his liver was removed, among other things. “The prognosis wasn’t good – especially since it wasn’t possible to remove all the metastases and the chemotherapy no longer worked,” he says.
But the doctors at the Berlin Charité continued to fight for his life. During oncological examinations, they discovered that antibody therapy for skin cancer could be suitable for his tumors. A lucky strike, because the treatment that Zienke has been receiving for two years now is actually working. “It’s like a miracle, thanks to the therapy all the metastases are gone,” he says.
He has to go to the Charité every two weeks until the end of the year. “Of course I feel weak, especially on the treatment days,” he says. To make matters worse, the therapy has caused him to develop adrenal insufficiency, for which he is receiving hormones. “It’s not that easy in combination with the treatment, but it’s bearable,” he says of the side effects. “I’m super satisfied,” he adds humbly. Because none of this compares to the strain and side effects of the chemotherapy treatments, during which he barely made it home without having to vomit.
It was not a given that Zienke received the antibody therapy at all. “The health insurance company didn’t want to pay for it at first – I had to hire a lawyer to fight through it.” That was by no means the only dispute he fought with his insurance company. “After my last relapse, they wanted to send me into early retirement so that they no longer had to pay sick pay,” he says. He could hardly have lived on the disability pension. He finally went to court to request that he be allowed to work again.
Today Bernd Zienke is working full time again and is happy with it – even if it isn’t always easy because of his illness. “It’s so important to have a regular daily routine – otherwise you’ll sit at home and just think about your illness,” he says. His employer and his colleagues support him in this. “They understand that, for example, I don’t have the strength to lift heavy things and sometimes I need an extra break,” he says.
Zienke is given a lot of strength by his commitment to the German Foundation for Young Adults with Cancer (DSFJEMK), which was founded in 2014. “Medical care is designed for people of older age; the foundation is fighting to improve this, especially for young people affected by cancer,” he explains.
For example, the organization has also launched a cancer portal so that young patients in particular can quickly establish contact with experts throughout Germany and receive important information and help. Not just medically, but also with all questions about jobs, rehabilitation and money. The organization also campaigns against discrimination – because the disadvantage caused by, for example, insurance companies like Zienke experienced is not an isolated case.
As a partner, Bernd Zienke also supports young people with similar diagnoses via the cancer portal. “This exchange is so important because others often can’t understand what you’re going through,” he says. In 2019, Zienke received the Felix Burda Foundation’s Honorary Felix for his commitment to the DSFJEMK. His advice to anyone affected by cancer: “Get help, you are not alone!”
*Note: FOCUS online, like the Felix Burda Foundation, belongs to Hubert Burda Media.
What do people in Germany get sick with? In a major focus area, FOCUS provides online information about the four major widespread diseases
We shed light on the medical background surrounding causes, symptoms, risk factors and treatment options. At the same time, we show you what you can do for each illness to minimize the risk.
In case histories, one affected person also reports on their life with cancer, heart disease, dementia or depression – moving, sometimes sad, but always encouraging.
