Cancer Survival, Lymphedema, and Entrepreneurship in Belgium: Can They Coexist? 

Karine Tollenaere is an entrepreneur and survivor of breast cancer who has to live with Lymphedema, a long-term condition where excess fluid collects in tissues causing swelling. The lymphatic system is a part of the immune system and it is vital for our bodies immune function. Lymphedema affects an estimate of 240 million people around the world. She has created a brand of clothing for women like her that suffer from Lymphedema and want to look gorgeous: Neliane.

What’s the current situation of cancer and Lymphedema and their patients in Belgium like? Where is it heading?

There’s too much focus on the medical side. We are making big progress in defeating cancer but there is still not enough care about the physical, social, and emotional impact of cancer.

Cancer affects one out of three people. That’s a very appalling number to me. It takes tons of energy, both physically and mentally, to cope with the diagnosis and treatment of cancer. No doubt about that. But once you have survived this struggle and ought to enjoy life again, you still are confronted with a number of side effects that often remain unseen by the people around you.

One very common side effect is Lymphedema, which often develops after cancer treatments involving surgery and/or radiotherapy. Only when it affected me too did I fully understand what this condition meant.

Most people have never heard of lymphedema. Even the doctors often misdiagnose it. Risk patients that get lymph node dissection and radiation often forget about the everlasting risk of developing lymphedema. Many doctors don’t want to talk about the risk of this side effect while it is so important to know upfront so you can take preventive actions.

Which changes would you like to see happening in the way cancer and Lymphedema are treated?

Doctors need to pay more attention to the side effects of cancer treatment. They need to bring up the risks and side effects immediately after diagnosis. Doctors are also imposing treatments on patients, while there should be more room to discuss and go for a second opinion.

How are you dealing with Lymphedema? 

When I was diagnosed with breast cancer in 2015 it had already spread to the lymph nodes in my armpit. I was treated successfully, but soon afterward I developed Lymphedema. Ever since, I’ve been dealing with the symptoms and discomforts of it every day. Suddenly I found it very hard to find elegant clothes that flattered me, but weren’t too tight on my affected arm and armpit. The only thing I could do was buy a bigger size, but that certainly didn’t make me look or feel like a million dollars.

Eager for a better solution, I screened the entire internet, but didn’t find a single answer. Instead, I stumbled upon a number of fellow Lymphedema patients who were equally desperate to find appropriate clothing. Then there were those who had not yet developed Lymphedema, but were at high risk. They also had to wear comfortable clothing out of precaution following doctor’s orders. We all had the same question: where do we find clothes that are comfortable enough, but still make us look gorgeous? So I decided to launch my own brand of clothing. 

With Neliane I want all those strong ladies out there to regain their dignity and self-esteem by wearing clothes that ease and mask the discomforts of lymphedema, durable clothing with a unique design.

Cancer has turned my world upside down, that’s for sure.  But I seized this moment to turn a bad story into a wonderful opportunity to contribute to society. I genuinely hope to help my fellow patients cope with the daily distress of lymphedema. 

Besides Neliane I also started the lymphedema awareness campaign in Flanders in cooperation with the Beautiful After Breast Cancer foundation, of which I’m a board member. I want to put this chronic disease more on the radar. 

What advice would you give the participants of Hack Healthcare to provide solutions for cancer patients?

They should reflect on:

1. How can we convince doctors to be more open towards the physical impact of cancer on patients?
2. How can we better handle the reintegration into the workforce?
3. How can we avoid discrimination against cancer patients by insurance companies?

What brings you to Hack Healthcare? Which themes are more interesting to you? 

As a patient, I’m very aware of all the roadblocks. I want to make participants aware of them.

What would you like to see coming out of Hack Healthcare? 

Proper actions and campaigns towards medical staff and companies.