Patient Involvement with Passion: Max Heller Brings His Perspective to the Patient Research Council at NCT West

Personalized Oncology Begins with Diagnosis and Communication

“Life expectancy is just a statistic. It only looks backward and ignores individual characteristics,” Max Heller told himself. He did thorough research and sought a second opinion at the Center for Integrated Oncology (CIO) in Cologne. There, he met Michael Hallek, Director of the Department I of Internal Medicine and CIO Cologne at University Hospital Cologne — now also Spokesperson of the NCT Steering Committee and NCT West, as well as Managing Director of NCT West - and Dirk Waldschmidt, Medical Coordinator for the Department of Gastroenterology and Hepatology at the CIO.

Waldschmidt conducted a second, much more empathetic diagnostic consultation — without giving false hope, but with time, respect, and honesty. He answered Heller’s many questions, helped him sift through information from his own research, introduced new ideas, and engaged in a dialogue on equal footing. The goal was a cure, even if no one could say whether that would be possible. For Max Heller, this experience was formative: cancer is deeply personal, and personalized oncology must begin with the diagnosis and communication. “There’s still a lot of work to do when it comes to doctor-patient communication,” says Max Heller.

A Courageous Path: From Clinical Trial to a Risky but Successful Surgery

Dirk Waldschmidt and Max Heller came across a clinical trial around the same time — one that tested a drug intended for another type of tumor. After completing chemotherapy and immunotherapy, they decided to take the next bold step: surgery, even though the tumor was deemed inoperable according to the textbooks.

Christiane Bruns, Director of the Department of General, Visceral, Cancer and Transplantation Surgery at University Hospital Cologne - and now Managing Director of NCT West — took on the complex procedure. “The patient underwent this extensive liver surgery without complications - an extended left liver resection, bile duct bifurcation resection, portal vein resection, and far intrahepatic bile duct reconstruction,” Bruns reports. “Preoperative CT imaging had shown a strong suspicion of tumor encasement of the right liver vessels, which fortunately was not confirmed during surgery after intraoperative sampling by the pathologist. The final histopathology was particularly encouraging: a complete tumor response to the pre-treatment and, therefore, a curative surgery!”

What got him through this time, Heller says in retrospect, were doctors who saw themselves as healers — and above all, the courage that was palpable everywhere: “The courage to try new things and to make full use of all medical options.”

From Patient to Partner: Research That Makes an Impact

These experiences eventually led the now 44-year-old to join the Patient Advisory Board at the CIO — and later, the Patient Research Council at NCT West. There, he advises patients, gives keynote speeches, and leads workshops on clinical trials. He regularly appears in the media and is involved in four trials himself. His perspective is valued even in trials beyond his own cancer type. The Patient Research Council meets quarterly, sometimes in person. Occasionally, principal investigators present their trials; other times, political or legal issues are discussed.

Max Heller frequently encounters Dirk Waldschmidt and Christiane Bruns — he remains in close contact with his former physicians. And they deeply appreciate his work in patient advocacy. “My survival touches the core of what motivates people to become doctors,” Heller says. And even more than that: stories and perspectives like his help advance future research and treatments. As Christiane Bruns adds:

“In this case, the interdisciplinary collaboration between patients, oncologists, and surgeons showed how a highly ‘palliative situation’ could be turned into a curative goal through pre-treatment followed by highly complex, personalized surgery. That’s why collaborative research with patients and their families is so crucial — to achieve the best possible treatment goal for each individual.”

Building Bridges Between Research and Reality

Max Heller is convinced: “We still have many bridges to build - and we need to show that research is possible and meaningful with us and for us.” He points out that patients from less-educated backgrounds or with a migration background are often left out — a problem that worsened during the pandemic.

“Germany has one of the best healthcare systems in the world, but access is not well guaranteed. What’s missing is clarity and understandability.” That’s where the Patient Research Council can make a difference. “Patient advocacy is my heart and my passion. It’s amazing to see what’s moving forward through the NCT right now!”