What is metastatic breast cancer? 

Metastatic breast cancer occurs when the cancer has spread farther than just the part of the body originally affected by the disease. When this happens, the most common areas where metastases occur are in the bones, brain, liver and lungs.   

Receiving such a diagnosis is upsetting and creates many challenges: it is unlike any other breast cancer diagnosis. Resuming a “normal” life after this diagnosis is complicated and requires special support. 

 We’ve chatted with diagnosed members of our community to shed light on the realities of metastatic breast cancer and the different challenges it brings.   

1. THE DAILY FEAR  

We realize that the sword of Damocles is hanging over our heads.

Marie-Ève

When a person is diagnosed with metastatic breast cancer, there is generally no talk of post-treatment or cure: this is one of the main challenges mentioned by those affected. Indeed, living with this fatalistic reality, between “uncertainty and fear of the progression of the disease” as Josée explains, is a daily ordeal that is very difficult to overcome.  

With this disease, the fatigue is not only physical: it is also the “fatigue of living on long-term reprieve” according to Annie Isabelle. The heavy burden of managing the disease, but also the daily routine, can generate a significant mental burden. The journey is punctuated by medical examinations and the anxiety, stress and numerous questions that force people with metastatic breast cancer to “live in 3-month increments”, as Bianka confided to us. This constant fear of the progression of the disease is a daily challenge.  

One thing that can help is to talk to people who are going through the same. That’s why the Foundation has created the Club Stade 4, a private Facebook group dedicated to people living with metastatic breast cancer. You will also find discussionsled by a social worker.  

2. PERSONAL GRIEF 

There are times when you think that this might be your last time with or doing something.

Chantal

Beyond the uncertainty, living in the moment is difficult when the side effects of the disease and treatments are a constant reminder of this reality, including “pain and fatigue,” as Marie-Ève explains. You must constantly adapt and give up certain abilities, activities or projects. Limitations and loss of autonomy create “little griefs that we have to make on a daily basis. It’s hard not to be able to do certain things anymore,” said Melanie.  

The second challenge is to try to live as normally as possible.

Nilia

While it’s hard enough to take one day at a time, the loss of certain abilities only adds to the already present burden of a metastatic breast cancer diagnosis.  

3. FINANCIAL PRESSURE 

Although some women look good and work, there are times when we would like to enjoy life a little bit without having to work our 40 hours week, but financially it is not possible.

Chantal

The balance is even more difficult to find when financial worries are added. In Quebec, employment insurance sick leave is currently limited to a maximum of 15 weeks, regardless of the diagnosis. This is too shocking a reality for those affected. This situation can lead to anxiety that does not help the diagnosed person’s medical condition. When will financial assistance be better adapted to the reality of the disease? 

4. FAMILY LIFE AND THE ENTOURAGE  

The worst challenge for me is trying to organize my end of life and my children’s life after I am gone, to think of different ways to stay with them, even in the afterlife.

Nilia

Metastatic breast cancer also has a significant impact onfamily and those around them. When the diagnosis is made, and also as the disease progresses, patients must deal with the reactions and emotions of their loved ones, who are sometimes prone to denial, feelings of injustice and immense sadness. For many, like Nilia, the main challenge is to manage the disease with their children and to assume their role as mothers despite the vagaries of the treatments and side effects. 

5. LACK OF RECOGNITION OF THE DISEASE 

Having breast cancer is overwhelming, regardless of the stage. However, people with stage 4 breast cancer do not receive the same treatment or experience the same reality as others following their diagnosis. Understanding and recognizing that metastatic breast cancer should be treated likeit’s own disease is an important message for many people.  

The realities of metastatic breast cancer are many and very often difficult. Together, let’s shed light on metastatic breast cancer.  

Tools That Can Help  

Once I accept it (…) I regain power over my life. Over what happens next. And especially over HOW I DECIDE TO LIVE IT.

Annie Isabelle

Of course, in the face of these many challenges, people with the disease can implement strategies to improve their quality of life: give themselves time to accept/adapt to the diagnosis (a process that can be long and arduous), surround themselves well, try supportive treatments such as meditation, massage or art therapy… Each person is different, and the acceptance and continuity of life following the diagnosis is very personal and unique.