Germany’s voice of the sarcoma hotline: A life commitment to volunteering

by Gabi Ott

“Karin Arndt, German Sarcoma Foundation!”  Whenever calling the sarcoma hotline in Germany, one is most likely to hear this greeting. The voice is clear and kind. Then, silence. Karin listens very carefully.

A former clear cell sarcoma patient herself with a complicated history, she can understand patients’ and carers’ sorrow and despair very well.  For her, it  started off with a wrong diagnostic approach leading to misdiagnosis which in turn resulted in an - initially - wrong treatment before she found the right experts.  Seven surgeries, recurrences and pains were part of her life. Karin knows: “You cannot  think clearly in a situation when you just learned that you have a cancer that is very rare, difficult to treat, and prognosis is seemingly bad”.

Advising patients and families in distress

Karin has been a volunteer patient advocate since 2008 and for the past seven years, she has been the voice of Germany’s sarcoma hotline. The number of calls she answered adds up to several thousands.

What she resents is the all too often lamentable communication between doctors and patients. “I just wanted that someone talked to me, and explained”, Karin recalls from her own experience. She wants to contribute to better information and care for sarcoma patients and dedicates many hours per week, any time, to answer the hotline. „When a patient calls us, he or she needs help, whatever is the time”.

Often, callers are distressed patients or family members. Karin guides them on next steps, such as finding a sarcoma expert, seeking a second opinion or psychological support, making a patient declaration, or organizing care—or she simply listens.  Sometimes, patients are unable or unwilling to discuss their cancer with their family. Loved ones may be anxious or grieving. Occasionally, even medical doctors seek her advice on locating sarcoma experts.

From patient to advocate: A life with challenges

For her own survival, Karin searched the internet - back in 2005 - and found a publication on soft tissue sarcoma, contacted the authors and decided to be treated by them, far from home and the family. Since then, she was in expert care and connected also with other patients through an online forum.

Looking back at Karin’s life, it becomes clear that she has always been someone who dares speak up for her own and other people’s rights, and to venture into unknown fields. Born in the German Democratic Republic, she studied informatics and was sympathetic to opposition circles. Despite facing job loss and unemployment due to her commitment to push for workers' rights and reforms, she continued her efforts but eventually, her career was cut short by the diagnosis of clear cell sarcoma.

Despite poor initial prospects, Karin has been cancer-free since 2008, dedicating her energy to patient support and advocacy ever since. And through extensive study, she became a quasi-expert herself, building a vast network of patients and sarcoma experts.

 Making patient voices heard

It is no surprise that the grandmother of five kids is also an active player in the institutional set up of the cancer specialist world. She is driven by the firm conviction that patients’ voices need to be heard by decision-makers and doctors, particularly for rare cancers such as sarcoma.

Looking back on 15 years of patient advocacy work in Germany, Karin highlights the following milestones in improving sarcoma diagnosis and care:

1.  Since 2010, the annual German Sarcoma Conference has served as a key platform for specialists to exchange knowledge, learn from one another, brainstorm big-picture ideas, and discuss actions. Also, it is an opportunity to engage and inspire younger medical doctors in this field of rare cancers.
2. In 2018, the first sarcoma center was certified by the German Cancer Society. Today, there are 21 certified sarcoma centers in Germany, and mandatory treatment guidelines for soft tissue sarcoma have been co-developed and approved by patient representatives. This enhances the chances for better diagnostics, improved care and ultimately better prognosis for patients, while ongoing efforts to maintain and advance sarcoma care must continue.
3. Sarcoma has been established as a thematic focus area in the cancer research initiated under Germany’s National Decade against Cancer.  This means that funding can be requested for sarcoma research, with patients playing an integral role in shaping research questions and design from the very beginning on.

Karin Arndt emphasizes the need for more progress in reaching out to first-contact healthcare providers, such as GPs and doctors of various specializations, who rarely see sarcoma cases and thus may not consider it as an option. After all, sarcoma account for only 1-2 % of malignant tumors in adults. Yet, the first point of contact is crucial for a path to correct diagnosis.

Helping people is her greatest reward

It is a volunteer job that requires a lot of time and energy, particularly since she is struggling with health issues herself. What keeps Karin going is the certainty that she can make a difference for everybody who contacts the hotline. And this is often rewarded with an immense gratitude.

What is the downside? “The time I am giving to other people, I am not available for my own family. And that hurts sometimes.”

This year, as she turns 70, Karin decided to stop the yearly control scans after 20 years.

Happy Birthday.

 

Photo credits:  Portrait cover by Uli Deck, other photos provided by Karin Arndt for publicationmi