The Spectrum of Sharing a Cancer Diagnosis With Employers

Whether a patient with cancer discloses their diagnosis with their employer is a personal decision, but one that requires proper information from the cancer team to have their needs met at work, experts explained.

Sometimes this decision may come at a very overwhelming time, when the diagnosis, treatment options and other matters are circling one’s mind, two oncology social workers with Iris by OncoHealth, a digital care telehealth platform, told CURE®.

“It can feel really fast paced and things are happening really quickly, a lot of changes,” said Jessica Fox, LCSW, OSW-C, APHSW-C, senior oncology social worker with Iris by OncoHealth. “So giving yourself a little bit of time, if you can, hopefully with the support of someone else in your inner circle, to think through, ‘What do I want to discuss with HR? What do I need from them? And what do I need to give them at this time?’ And knowing that you can always go back and disclose more information, if you're just not sure at this time if you want to disclose certain information.”

Some of the information that may be disclosed to an employer also includes certain accommodations a patient may need during and after cancer treatment.

“It's important to be upfront and clear with the medical team about what your work actually involves,” Alexandra Gubin, MSW, LCSW, senior oncology social worker with Iris by OncoHealth, said in an interview with CURE®. “(Be) very detailed about everything from if you're seated near a bathroom or not, all these things that we may not think about so much, but you need to start thinking about more, especially the physical aspect of work.”

Disclosing Information to Employers

Patients are not technically required to disclose their cancer diagnosis to their employer, although some patients choose to do so to address any time they may need to miss from work for appointments and side effects, among other reasons.

READ MORE: Disclosing Cancer to Employers: Survivors Share Their Reasons to Tell or Not to Tell

“If you’re getting chemotherapy or radiation — and then also the side effects that you might have — that might affect your ability to work,” Fox said. “It’s thinking through with the medical team both what to expect time-wise for treatment and then also how that might affect your ability to be able to work. … You might need to change what you’re doing at work, whether that’s how often you’re going or even if you’re able to attend work.”

Organizations exist to help guide patients with cancer through the laws and regulations regarding cancer in the workplace.

Legal rights may come into play when a patient requests accommodations at their workplace, Fox added. These rights protect a patient’s job and provides benefits, although not every employer is obligated to uphold Americans With Disabilities Act accommodations

“Some people I’ve worked with have worked in smaller independent situations where they may not actually quality or have any sort of legal protections,” Gubin said. “The first step is to find out (and) inquire. Some (workplaces) don’t have a formal HR department, (but try to) understand the landscape, culture and environment of where you do work.”

To find more information about the rights and legal protections patients with cancer have in the workplace, there are several organizations that provide education including Triage Cancer, Cancer and Careers, and Cancer Legal Resource Center.

Both Fox and Gubin also urge patients with cancer to research the protections and legal rights they have, as they can differ by state and by the size of your employer, among other factors. Some of these rights include short- and long-term disability, in addition to Family Medical Leave Act (FMLA).

Taking Comfort into Consideration

Beyond benefits and legal rights, patients with cancer may disclose their diagnosis with their employer because they work at a safe, supportive environment.

“They know that they’re also going to get the support that they need and that they want,” Fox said.

Although there are patients who may not feel as comfortable sharing this information with their employers, sharing aspects of one’s diagnosis is a spectrum rather than a yes-or-no decision; they may not need to disclose every aspect of their diagnosis including duration of treatment and stage of their disease, for example. This may be a situation where patients may not have worked at their employer for a long time, they are still trying to figure out the work culture or maybe the patient is a private person.

“It’s a personal decision ultimately, thinking about what you’re sharing in terms of what you need, what is it that you’re asking for that you need,” Gubin said. “I always like to think less is more; if you’re unsure about how much to share, you can always go back. If your medical team is completing, let’s say, family medical leave paperwork on your behalf, if you haven’t provided enough information, there’s always an opportunity to go back and update that information. Also, you may be someone who thinks I’m going to try this out for now and work. Know your needs may change over time, so just knowing it’s a fluid process.”

Fox added that taking into consideration why a patient decides to disclose information on their diagnosis will help them decide how much information to share with their employer. She also mentioned that patients can ask for privacy when discussing this topic with their employer.

“You have protection as far as privacy when you're working with HR or talking with your employer,” she said. “It's always to your benefit — even if you have that legal right — to say, ‘I'd like this conversation to be kept private,’ ‘I want this conversation to be between the two of us,’ and to reinforce with anyone you speak to if you want that to be private, to let them know that.”

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