Metastatic breast cancer: an ultramarathon

Joelle Thils - testimonial on metastatic breast cancer

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Around one in every eight women will develop breast cancer in their lifetime*. A percentage of them will be affected by an advanced form of the disease – metastatic breast cancer.

This is what happened to 52-year old Joëlle, whose cancer came back after 14 years of remission. An enthusiastic sportswoman, Joëlle compares her cancer to an ultramarathon that requires endurance, strength and never giving up. The consequences of long-term treatment on her day-to-day life and her loved ones are onerous but often go unnoticed by others. Like many others, Joëlle also often feels forgotten because of the chronic nature of her illness. In order to ensure that breast cancer does not become a heavy, life-long burden, she is adamant that continued research is vital.

Joëlle’s story

Joëlle was first diagnosed with breast cancer 14 years ago at the age of 38. Together with her husband Philippe, she has a son, Léo, who was just six years old when she became ill. She underwent surgery, chemotherapy and, for fear of a relapse, she even decided to have both breasts removed.

“I did everything I possibly could to make sure it wouldn’t come back…”.

The years went by, punctuated by regular check-ups. After 10 years and no symptoms, Joëlle considered herself cured. She continued to indulge her passion for sports during her treatment, setting herself challenges like the famous Marathon des Sables, a five-day footrace of 250 km through the Moroccan Sahara, which she ran in 2017.

Not only was this a sporting milestone, it was also a way for her, at the time, to mark 10 years of living breast cancer free.

But then, 14 years later, she experienced a relapse. Joëlle felt a strange sensation in her arm while running. She underwent an MRI (magnetic resonance imaging) and the diagnosis showed that the cancer had come back, this time in her brain. For her and her family, the world fell apart at that moment. This was followed by brain surgery, radiation and hormone therapy, which Joëlle continues to undergo in order to ensure that no other cancer cells are lying dormant elsewhere in her body.

A disrupted day-to-day life and a heavy burden to bear

Joëlle has a heavy burden to bear that no-one else can see: check-ups every three months, the after-effects of the operation affecting her movements, the scars and traumas of the various treatments and operations, not being allowed to drive, the stress between MRIs, the isolation, and the worry that she may not live to see her grandchildren.

“We don’t talk enough about the long-term consequences on patients’ lives. After the treatments, I felt very alone, having to manage my stress and follow up with the different specialists who were each treating me separately. It’s hard, and the pandemic has made things even worse.

During the pandemic, Léo would come to the hospital on his bike and stand outside in the parking lot where he could see my hospital room window (which was on the fifth floor). It was very hard at that time.

People don’t realise I’m sick because I’m trying to live a normal life. But I know I’m not out of the woods yet, it’s there, it can come back anytime. After the operation, you are ‘fine’ but you don’t feel any better. There is a risk of further relapse and you have to be able to manage this burden. Metastatic breast cancer is like an ultramarathon, you are in it for the long haul. You have to be vigilant, and take care of yourself and your body,” Joëlle confides.

We need further research

Despite the enormous progress already made in early-stage breast cancer, metastatic breast cancer is still an incurable disease that affects many patients. And while some patients live longer than others with the disease, we still don’t understand why.

There is an urgent need to find better treatments for these patients and, to do so, further research and funding is required.

“We have definitely come a long way. Most women with breast cancer are now able to get through it because they are receiving increasingly targeted treatments. There is a public perception that this disease is almost under control, which is not true. The progress mostly concerns early-stage breast cancer. Once the cancer spreads to other organs or recurs, we doctors have far fewer options for our patients. It is our duty to carry out further research. It’s vital,” stresses Dr Martine Piccart, co-founder of the Breast International Group and President of BIG against breast cancer.

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