“I’m grateful for the five extra years I got to spend with my mother.”

Bruyère Zimmerman

ALK Positive Belgium

Interview with Bruyère Zimmerman of ALK Positive Belgium

Bruyère is 22 years old. This summer, she lost her mother Florence to ALK+, a rare form of lung cancer, after a five-year struggle. Though the loss is overwhelming, she also looks back with a sense of gratitude. “My mother wasn’t fighting against cancer; she was fighting for life. That’s why it feels like we gained five years.”

You lost your mother to ALK+ lung cancer, Bruyère. Could you tell us a bit more about this rare form of lung cancer?

ALK stands for Anaplastic Lymphoma Kinase, a protein we all have. People who are ALK-positive, or ALK+, have a non-hereditary mutation in the ALK gene that leads to uncontrolled cell growth, which causes lung cancer. As the disease progresses, the cancer often spreads to other organs as well. This genetic mutation is responsible for 4% of all lung cancers. 

Nearly half of patients diagnosed with ALK+ are under 50. The causes remain unknown, making the disease particularly difficult to treat. While there is currently no cure, some therapies do exist that slow the progression of the cancer.

"This genetic mutation is responsible for 4% of all lung cancers."

Your mother was diagnosed with ALK+ in 2019 at the age of 46. How did she respond to this diagnosis?

It may sound strange, but the diagnosis came as a bit of a relief to my mother. She had felt unwell for over a year and had to stop her work as a diplomat. She knew something was off, but the doctors couldn’t pinpoint the cause. They tested for cancer, but not for lung cancer. Given her age and the fact that she had never smoked, no one suspected lung cancer.

After more than a year of uncertainty, the diagnosis of ALK+, which is a rare and incurable form of lung cancer, came as a shock, but it also brought a sense of calm. At least we knew what was happening. My mother immediately decided to face the situation with positivity. She wasn’t fighting against cancer; she was fighting for life. Every extra moment was seen as a victory.

"She wasn’t fighting against cancer, she was fighting for life."

As her daughter, how did you cope with this difficult time?

I was 17 when she was diagnosed, and I’ll never forget that day. I knew I was going to lose my mother, the most important person in my life. It was devastating.

Yet, the clarity the diagnosis brought also gave me a sense of peace. She did her best not to show it, but I already knew how serious it was even before the official diagnosis. There were times when I had to pick her up after she’d gone shopping because she couldn’t get back home on her own.

I’m 22 now. Losing her is still incredibly painful every day, but I’m grateful for the five extra years we got to spend together.

In 2020, your mother co-founded ALK Positive Belgium. What did she hope to achieve with this organization?

It was her way of helping others. She wanted to connect ALK+ patients so they could share their experiences with the challenges they faced and the treatments they received. But she also wanted to keep them informed about scientific research and clinical trials related to ALK+, showing that progress is being made on this rare form of cancer. She also wanted to raise awareness of the disease among the general public, healthcare providers, and policymakers.

These are the goals that ALK Positive Belgium continues to pursue every day.

Having experienced the disease firsthand, how can people with ALK+ receive better support?

The most important thing? Listen to patients. 

As the tests did not reveal anything, my mother had to struggle for a long time to be taken seriously and to make physicians understand that something was really wrong. Sadly, many people will be able to relate with my mother’s experience, even those with other illnesses. No patient should have to fight just to be heard.

For ALK+ in particular, more awareness is crucial. This applies to the general public as well as healthcare professionals and policymakers. Since the disease is so rare, it often isn’t considered as a potential diagnosis.

"No patient should have to fight just to be heard."

Do you have a message for policymakers?

Yes, for both policymakers and the industry. 

Thanks to scientific progress a lot more treatment options are available today than was the case ten years ago. However, investment in therapies for rare diseases like ALK+ is far below that in therapies targeting diseases that affect a larger population. Profit is too often prioritized over life.

At the end of every year, people try to raise money for research into treatments (for various conditions). While this is positive, funding for research into rare diseases should not depend on these efforts. The public and private sectors must join forces to find solutions. Life should always come before profit.

This campaign also seeks to debunk myths about lung cancer. In your view, what is the biggest myth?

That lung cancer is always caused by smoking, and that people who get it have “brought it on themselves.” 

My mother never smoked, she didn’t drink alcohol, and she had a very healthy diet. Yet she was diagnosed with lung cancer at the age of 46. The simple fact that we have lungs means we can all get lung cancer.