How to have a conversation about cancer at work

15 Mar 2023

By Luan Lawrenson-Woods.

Telling people at work about your breast cancer diagnosis can be an added stress during an already extremely stressful, emotional and uncertain time. You might not know what your treatment is going to be, what side effects you’ll have, or how that will impact work.

Sue Woodall was 59 and at the pinnacle of her career when she was diagnosed with ER+/ HER+ breast cancer in 2020. Following a lumpectomy Sue had treatment for two and a half years: IV chemotherapy and radiotherapy for 6 months; 3 weekly Herceptin infusions over 12 months; and then took Neratinib for a year. She’s now on an aromatase inhibitor (Arimidex) for 5+ years.

“I was unprepared for the side effects both short- and long-term. And those long-term side effects persist, like fatigue, concentration, memory loss, lack of energy, muscle aches, joint pain, and the psychological issues of dealing with it.”

“One of the very early experiences I found most difficult was explaining my diagnosis to those around me. And that included my family, my friends but also my work colleagues," Sue says. There was limited understanding about breast cancer sub-types and the different types of treatment. “I felt I needed to explain, sort of justify why I was always on treatment and why I was always feeling pretty poorly.”

Initially Sue thought that she’d be able to work through treatment. “But the minute I started chemotherapy, which was Doxorubicin (‘red devil’) and Cyclophosphamide and Taxol, I knew that I just couldn't work. I did try for a week or so, but it wasn't going to happen. I was a senior executive, and I just knew that I was not operating at the same pace. I didn't have the same cognitive ability. I had memory issues. And I just knew I would fail.”

Sue shared with her colleagues that she couldn’t work during treatment. “It empowered them to have similar conversations in their workplace. We are individuals that have a life and, you know, we don’t talk about the most intimate details (like breast cancer) at work. But a cancer diagnosis is a common experience.”

Ultimately Sue realised that it was impossible for her to continue in her role. “I had changed. I had lost my self-confidence. It would be too difficult to go back to work mentally and physically. That left me grieving because I'd lost control of my life and my work, all because of this cancer diagnosis.” She knew that she wasn’t the only person experiencing these challenges. “It was happening to people around me and this was highlighted in the research I started to immerse myself in.”

“You’re living and you’re working and then all of a sudden cancer comes in and intersects with all that.”

Sue saw an opportunity to start conversations in workplaces about different cancer journeys that acknowledge that no two experiences are the same and help improve the return-to-work experience for people who’ve had a diagnosis. She’s set up LiveWorkCancer which brings together her lived experience of cancer with her professional leadership experience and skills. She’s also trained as an IECL coach and is a registered Cancer Council Support Group Leader.

LiveWorkCancer helps people reintegrate back into the workplace through one-on-one mentoring (the first 3 sessions are free, with a notional fee afterwards); support groups for people balancing work and cancer; and information and networking forums. Sue also offers consultation services to help businesses create ‘cancer kind’ workplaces.

For Sue, open two-way communication is key. She recommends that you talk to your employer as soon as possible after diagnosis. “You're not looking for sympathy, you’re just calling it as it is,” she says. “It also gives you the opportunity to set expectations.” While anything you talk to them about will be confidential, Sue suggests that you only share what you want to share.

Having the convo at work

Here’s some of Sue’s tips on talking to your employer about working after a cancer diagnosis.

1. It can be difficult to start the conversation. Consider asking someone to go with you when you talk to your employer. They can help you articulate what’s happening but also listen, take notes, ask follow-up questions, and remember what is said.

2. Be sure to keep the communication going because things evolve. You might think you’re going to be OK and then suddenly the cumulative impact of treatment affects you. If employers know what your limitations are, they can help support you better.

3. Encourage people around you to inform themselves about cancer. You don’t need to become the font of all knowledge about cancer – you need to look after your health.

4. Be upfront and realistic about your capacity and capability. Don’t set your expectations based on your very best day – do it in reverse. What was your average or tough day? Use this as your starting position and then you work up from there.

5. Consider whether you need a different work environment (if you’ve had reconstruction, lymphoedema or neuropathy, for example) or if you can limit travel time by working at home more.

Sue stresses that it’s important to be realistic about what’s going to help you return or continue to work. Some of the things you could consider:

  • Working shorter or fewer days
  • Changing your work duties
  • Requesting additional time to complete tasks
  • Modifying performance expectations
  • Retraining for your job
  • Training in new skills to help adapt to the ‘new you’
  • A coach or someone who can ‘job shadow’ you
  • Fewer meetings and/or more breaks
  • Asking for additional paid health/wellbeing leave

Your rights

Be prepared that you might be setting a precedent in your workplace. Sue’s found that many workplaces don’t have policies that address the needs of employees receiving treatment for early or metastatic breast cancer, or who are experiencing the long-term, chronic side effects of treatment and ongoing medication. “Even though you know that you’ve got the law to back you, there’s really a sense of isolation.” Sue advises that you inform yourself about your rights and look to places like the Cancer Council who have a wide range of free resources, including:

  • A booklet that outlines your workplace rights and responsibilities.
  • A pro bono workplace referral service, where you can talk to HR professionals about employment issues and your rights.

Sue’s diagnosis has given her the opportunity to enter a new chapter in her life. While that wasn’t through choice “it’s enabled me to give back to the community and I am truly committed and passionate about helping the next person who walks the work-cancer trek.”

Read our blog about some of the long-term side effects of breast cancer treatment and how to manage them

Dealing with the long-term side effects of treatment can be frustrating. Read how Luan’s re-framed her thinking to accept ‘what is’, to help her recognise what support she needs after her diagnosis.

This content is brought to you in partnership with Eli Lilly Australia and developed independently by the team at Pink Hope.