Interviewees:

• Patricia Toussainte (Rehabilitation Team Coach)
• Marie Martin (Psychologist Coordinator, Workplace Options)
• Jolien Hemelsoet (Psychologist Coordinator, Workplace Options)
• Emmanuelle Fourcade (Rehabilitation Manager, Workplace Options)

Q: I think that, a lot of the times, when people first think about cancer—whether they’ve heard that someone’s been diagnosed or has been undergoing treatment for it—the first place they go to in their minds is, “Well, what’s the survival rate?” If it’s not a good number, then right away they’ll be able to grasp just how hard, how challenging this person’s journey is going to be. While it is very much excellent news that all survival rates related to breast cancer have significantly improved over the last few decades—as the overall 5-year survival rate now sits at or above 90 percent—the challenge that patients as well as survivors then experience is dealing with the ignorance that the people around them display when it comes to their treatment journey. One’s journey with breast cancer is never black and white: it’s not just chemo, or radiation, or mastectomies, and then you’re done. As I explain in a past blog, breast cancer treatment comes with a range of side effects, including physical changes like pain, extreme fatigue, nausea and vomiting, loss of appetite, sleep disturbances, changes to weight, loss of hair, loss of appetite, loss of libido, and so much more; it can lead to anxiety, depression, body dysphoria, loneliness, grief, and self-disgust; and worst of all, it can interfere with relationships: it can impede upon a person’s ability to fulfill work, family, and social obligations, and the pain of the experience can be so incredibly isolating for the person. With that in mind, what is something you wish more people knew when it comes to how breast cancer and its treatment impacts patients’ daily lives and overall wellbeing?

Rehabilitation Team: Everyone reacts differently to the news of illness and treatment. When the diagnosis is announced, people need to respect the integration phase of the announcement. During this sensitive period, the person will be more or less receptive to information about their illness. For healthcare professionals, it’s not a question of giving more or less information, but rather the right information, adapted to what the person can hear. In other words, the most important thing is for the person to know, when the diagnosis is announced, is that they will not be isolated, and that a multidisciplinary team is taking charge; that they will be able to express their questions, fears, feelings, and needs to healthcare professionals; that those close to them will also be able to mobilize resources throughout their treatment, and that they won’t have to deal with the anxieties of those around them.

Then, throughout the treatment, offer a dedicated space and time to receive and process this sensitive information: with a psychologist, a dedicated nurse, a peer group, expert patients to give feedback. Belonging to a peer group should not be overlooked, as it helps to unite and protect. “When I was on chemo, it was with my chemo buddies that I felt good”. 

And finally, it’s important to pay attention to fatigue, which is not visible.

Q: In addition to the misconception that ‘death’ is the worst thing a person battling breast cancer can experience, what are some other common stigmatic beliefs, stereotypes, or misconceptions that you see getting in the way of patients’ relationships with their friends, families, and co-workers?

Rehabilitation Team: What comes up most often are the preconceived ideas and/or accepted social expressions to which those around us (friends, family, work colleagues, etc.) can relate. These are often out of step with the original intention, and can be counterproductive. For example, the expression “you’re going into battle”, which could be used as a form of encouragement before chemotherapy, may not be appropriate because “you don’t go into battle, you have no choice.”

The simplest thing to do is to try to remain neutral and not project any of your worries, anxieties or preconceived ideas. One patient told us that she particularly appreciated contact with animals during this period, because “there’s nothing in their eyes about the disease.” 

In other words, being viewed through the prism of illness can reduce one’s status to that of a patient, and affect the quality of social relationships in the broadest sense.

Q: What are some of the ways in which breast cancer or its treatment can impact people’s mental health, their spiritual health, their financial health, their social health, as well as their physical health, that people might not know about? For instance, what are some ‘hidden costs’ of cancer? How can it impact their work and work life?

Rehabilitation Team: It’s very difficult to answer this question because there are as many possible situations as there are people with cancer. I can, however, give the example of someone for whom the disease, chemotherapy, an operation to remove a breast, fatigue and pain created a cascade of reactions.

It started with marital difficulties that ended in divorce. Then the wife was unable to keep her home because she could no longer pay the rent on her own. She had to move away from her place of work. This distance, combined with post-treatment fatigue, meant that she was unable to return to work on a stable basis: she would go back to work for a few weeks, then be off sick again. Her employer ended up recruiting someone else to do her job. The woman felt caught in a vicious circle that increased her anxiety and meant she couldn’t feel strong enough to return to work. She remained incapacitated and began to exclude herself socially.  

Q: With these costs and consequences in mind, it’s doubtless important that those battling breast cancer not only get the clinical care that they need but help for their holistic health instead. What are some complementary methods of care that are recommended for those going through treatment, rehabilitation, or recovery? Are there certain benefits or programs that employers should strive to invest in for their employees with breast cancer?

Rehabilitation Team: Not being “just a patient” is a notion that often comes up.

As a result, support treatments such as socio-aesthetic care (massages, facials, and body treatments, makeovers), dietetic workshops (to find the right foods for energy recovery), sophrology, wellness cures (seawater, body and facial treatments, massages), cognitive remediation workshops (for memory disorders, attention concentration), and adapted physical exercise (muscle strengthening, yoga, pilates, dance) are used. These treatments help to pamper the body, which has been badly affected by illness and treatment, and to restore self-esteem.  

At the same time, psychological support provides a space to let go of anxieties, and to work on the painful experience of illness and treatment, as well as the associated traumas, from the diagnosis to the post-cancer period. It’s all about allowing yourself this space to free yourself from pain and support your emotions.

Last but not least, employers are well advised to invest in and offer post-cancer care to their employees, in order to support them in their return to a balanced state of health, and to prepare them for their return to work under the best possible conditions.

It’s important to anticipate and prepare for the return to work, especially after a long-term illness, because it’s important to think about how to reorganize one’s professional activity in view of the changes brought about by the illness and/or the factors behind the absence.

Q: What are some key ways in which managers, supervisors, and the teams they lead can support colleagues who are undergoing treatment or grappling with the recovery and return-to-work process?

Rehabilitation Team: The main ones include:

• Staying in touch and sending messages of support and encouragement to affected employees, and suggesting what help is available when needed;
• Respecting and understanding if they do not get back, as they have other priorities and constraints that they may be dealing with at this critical stage of their life;
• Knowing how to ask for and give news without being intrusive or distant, and without polluting the absent colleague with negative work news;
• Preparing for the return-to-work, i.e., working with the employee to co-construct a return-to-work scenario that is compatible with their new health situation (e.g., adapted workstations, gradual increase in workload, etc.);
• Keeping in mind that fatigue will be present without always being visible, and that it is not always easy to ask for help for this reason; and
• Working with the team who will be welcoming the employee back to work to help them through this stage, so that the relational pitfalls described above are limited, if not avoided.

Q: What are some things that people often struggle with the most upon returning to the workplace—or just returning to life in general—after breast cancer treatment? How can counselors and coaches help with these transitions?

Rehabilitation Team: The issues that come up most frequently are:

• The fear of other people’s gaze, of pity or overprotection or, on the contrary, of indifference;
• The fear of being lost, of feeling useless, of no longer knowing how to do things, or of no longer fitting in;
• Difficulty coping with fatigue and pain that cannot be seen, existential and/or professional questioning, the psychological and moral after-effects of the fight against the disease, and the feeling of the sword of Damocles; and
• Difficulty coping with anti-recurrence treatments and their effects (hot flushes, fatigue, etc.), and perhaps the physical changes that have taken place (e.g., self-image issues).

As a result, it seems important for counselors to help the person, without being exhaustive, to:

• Accept physical changes and the gaze of others;
• Learn how to express and work around their new health constraints and functional limitations;
• Know how to position themselves in relation to the different reactions of colleagues (e.g., indifference, overprotection, envy of workstation adjustments, reproaches concerning workload transfers, etc.); and, if necessary
• Change jobs and retrain

Q: What are the benefits of having a team of clinicians, counselors, coaches, employers, family, and community members working together to support someone battling or recovering from breast cancer?

Rehabilitation Team: A breast cancer patient needs to be supported. The announcement of the disease, as well as the disease itself and its treatment, mobilize and concentrate the patient’s energy. That’s why it’s so important to give them the opportunity to have a guide or support group to “hold their hand and show them the way.”

From the moment the diagnosis is announced, through the various care protocols, to the consolidation and remission phases, each person will provide moral support, ensuring that the patient does not feel alone, isolated, or abandoned by his or her illness. Each person will intervene at different times and, in his or her own way, will help the person in care to have a connection, information, a relay, a response, a positive projection, emotional support, a parenthesis, entertainment, etc.

Q: After all this talk about how others can support those in their life who are battling breast cancer, how can those individuals themselves take care of their own health and retain a sense of agency amid this oftentimes debilitating and invasive illness?

Rehabilitation Team: “Illness is like a pause in your life”, said one of the people we accompanied.

That’s why it’s so important to help breast cancer sufferers find the spaces and means they need to ensure that cancer is “a page in the book of life, but not the book”. For example, having a pace of life that doesn’t generate continual stress, being able to disconnect, establish social links, develop creativity, optimism, and positivity; practicing regular physical activity, eating healthily, adopting a healthy lifestyle, preserving the quality of one’s sleep… are all levers on which everyone can act.