‘We aren’t aliens’: The unseen struggles of breast cancer patients as they return to work after treatment
After a life-changing diagnosis and treatments, some breast cancer patients who return to work find themselves struggling with post-chemotherapy side effects, body image issues, prejudice and discrimination. This breast cancer awareness month, CNA Women asks: What can we do differently?
Faced with an uncertain future, as well as painful and expensive treatments, and mental distress and anguish, breast cancer patients also grapple with disruptions to their career and financial well-being.
Some continue to work while receiving treatment, while others choose to take between three and 12 months off work for chemotherapy, surgery and radiotherapy, noted Dr Samuel Ow, consultant at the Department of Haematology-Oncology, National University Cancer Institute, Singapore (NCIS).
In fact, some patients may leave their jobs altogether. Globally, between 26 and 53 per cent of cancer survivors lost their job or quit over a 72-month period after diagnosis, noted Hillary Hoo, assistant senior social worker Singapore Cancer Society (SCS) Psychosocial Support Services.
Regardless of when they return to work, many breast cancer patients experience some form of stress and anxiety, said Hoo. Their workplace may have changed, their own bodies have changed, and they may not receive the support they need to make a good transition.
BACK-TO-WORK CHALLENGES AFTER BREAST CANCER
Many people may have some knowledge of the side effects of chemotherapy, which include fatigue, insomnia and poor concentration also known as “chemo fog”.
Few however, are aware of the long-lasting residual side effects that linger even after the completion of chemotherapy. In addition to fatigue and poor concentration, these may include numbness in the fingers or toes, as well as mental health issues, said Dr Ow.
Stage 2 breast cancer survivor Yeo Ai Lin recalled being caught off guard by these post-chemotherapy side effects, such as joint pain and body aches. For Yeo, the post-chemotherapy side effects were more intense than during the chemotherapy period, making it challenging for the cafe owner to work.
“My actions and movement need to be slowed down or readjusted so that I don’t over-exert my body, so it takes a longer time to complete tasks. My hands are also weaker than before, making it more challenging to move goods or furniture.
“Instead of making a single trip to replenish the canned beverages in the fridge, this has to be broken down into two to three trips,” she said.
Those who aren’t self-employed also worry about whether their boss and co-workers would be sympathetic towards their new limitations and needs. In fact, some may return to work feeling like “damaged goods”, said Hoo.
Others struggle with body image issues due to hair loss from chemotherapy, as well as changes to the appearance of their breasts due to mastectomy, reconstruction or radiotherapy. Younger patients may undergo early menopause from the treatment, which may result in physical changes such as dry skin and weight gain as well, noted Dr Ow.
Their workplace may have changed, their own bodies have changed, and they may not receive the support they need to make a good transition.
In non-inclusive work cultures, breast cancer patients and survivors may even face discrimination. “Some have shared how co-workers distanced themselves because patients were deemed to be 'bad luck' or 'contagious'. They also found themselves the subject of gossip, or were excluded from work opportunities,” Hoo said.
In some companies, questionable employment practices include forcing patients to use their annual leave for medical appointments despite still having medical or hospitalisation leave remaining, poor performance appraisals despite having met all work targets, as well as conversion from full-time to part-time or contract work without prior notice, Hoo added.
Patients may even face unlawful terminations. A US study suggested that 20 to 30 per cent of breast cancer patients will lose their jobs.
“Patients looking for new jobs also worry about whether disclosing their breast cancer diagnosis will negatively impact their chances of getting the job, and many have faced rejections despite already being in remission,” said Hoo.
EASING THE TRANSITION BACK TO WORK
That said, for many breast cancer patients, work is an essential part of their recovery journey. “Time really passed slowly when I was resting at home. Working helps me to keep my body and mind active and distracts my mind from the pain. It also allows me to meet people and engage in conversations,” said Yeo.
In addition to its financial benefits and social support, returning to work also helps to restore a sense of normalcy to patients’ upended lives.
While this transition is understandably challenging, Dr Ow suggested that exercise, proper nutrition and keeping a positive outlook will keep side effects more manageable. Cancer rehab, which includes physiotherapy, occupational therapy, dietetics, counselling and support groups, also helps.
“The side effects may not completely ameliorate with time, but patients can learn to compensate and cope with them over time,” he explained.
Patients who need emotional support may also reach out to SCS’s Return To Work Programme, the National University Hospital’s Women’s Emotional Health Service, as well as other support groups.
A little planning also goes a long way towards easing the back-to-work transition, especially if patients prep for difficult conversations in advance. Unless the nature of their work requires it, patients should know that they are not required to share their health condition with employers, said Hoo.
Should they choose to do so to seek support from their co-workers, they should decide in advance whom they would like to disclose the information to and how much they are willing to share.
“Be mindful of the boundaries you would like to put in place surrounding this conversation, be prepared for questions and do not be afraid to communicate when you feel uncomfortable talking about certain topics so that others are aware and can be mindful,” Hoo explained.
It would also help if patients make it a point to update employers of their recovery progress, needs and any changed goals or priorities, and inform them about appointment schedules in advance, to minimise work disruptions.
In many cases, flexible arrangements can work for both patients and the company. These may include a compressed work week where patients work full-time hours but fewer days per week, staggered hours where patients are given the flexibility to start and end work at a time that better suits their health and work commitments, part-time work, hybrid work, as well as a phased return to work with a reduced workload at first before slowly returning to working at full capacity, Hoo suggested.
DEALING WITH INSENSTIVITY AND DISCRIMINATION
While not everyone has personal knowledge or experience with breast cancer, and co-workers may sometimes make insensitive remarks, patients have the right to be respected and should make it a point to share their boundaries clearly, constructively and kindly with co-workers, suggested Hoo.
When it comes to workplace discrimination, she advised trying to communicate and negotiate with employers as a first step before escalating the matter. In such cases, it also helps for patients to put together evidence surrounding their claims.
“If the cancer patient is working in a company where the Singapore branch is a subsidiary, there is also value in reaching out to the main company overseas by writing to management explaining one’s situation with the hopes of reaching a mutually beneficial conclusion,” she said.
If this fails, patients may explore lodging a complaint with Tripartite Alliance for Fair Employment Practices (TAFEP) or the Ministry of Manpower’s Labour Relations and Workplaces Division.
“It is free or usually very affordable to file a claim with MOM for wrongful dismissal if one is dismissed due to a medical condition,” said Hoo.
SUPPORTING CO-WORKERS WITH BREAST CANCER
The onus should not fall squarely on patients and survivors to manage this return-to-work transition. Given that breast cancer is the most common cancer globally, as a society, we should make a collective effort to find out more about the disease and side effects, and be mindful of a co-worker’s or friend’s daily struggles.
“We're not just dealing with the cancer diagnosis; we're dealing with a new body image, losing strength on one side, and struggling to build back our confidence and self-esteem,” said Aisha Jiffry, a breast cancer survivor.
Don’t ask if you can touch our reconstructed breasts, or make comments such as ‘Hey, someone I know also went through it’.
“Be understanding during this tough period. Be our friend and invite us for lunch. Although many of us may have undergone a transformation, we aren’t aliens, you know?”.
Co-workers should also refrain from making negative comments or offering unsolicited and unhelpful advice on how patients could better take care of themselves, said Hoo.
“Don’t ask if you can touch our reconstructed breasts, or make comments such as ‘Hey, someone I know also went through it’. Everyone's journey is different so stop comparing us,” Aisha added.
With inclusive and supportive work cultures, breast cancer patients may continue to contribute meaningfully as part of a team. “Patients who return to work do have a strong sense of commitment and drive to do well and contribute to their workplace and society, especially if the workplace had been supportive during their cancer journey,” said Hoo.
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