Mar 27th 2020

Patient Perspective: Delivering My Cancer Diagnosis

Delivering a cancer diagnosis is never an easy job for providers. It's nuanced. It's complicated. And even when there's hope for treatment or recovery, it's still cancer—something no one wants to have.

On the other side of the table, it's an entirely different experience.

We spoke to patients who were on the receiving end of a cancer diagnosis and here's the feedback they wanted providers to know about their experience.

Feedback 1: Be direct and detail-oriented

Kandace* was diagnosed with cervical cancer just two weeks after starting a new job. A nurse navigator relayed the diagnosis over the phone — and she helped Kandace coordinate her various appointments.

"It was nice that I heard it from someone I had been speaking to multiple times previously," she says.

And when she had her first oncology consult appointment with a gynecologic-oncology (gyn-onc) surgeon, Kandace was pleased. "She was super-efficient and explained upfront what the options would be depending on the pathology results," Kandace says. "It put guardrails on how far my mind wandered during the waiting phase."

The gyn-onc also helped Kandace think through the overwhelming logistics of 25 daily radiation treatments.

Feedback 2: Open communication is appreciated—don't sugar coat

Don't say, "That's the good kind of cancer," says Joanna, who lives with thyroid cancer. "It isn't good. I now lack a thyroid so my body can't flex to needs for T3/T4."

Joanna believes honesty is the best policy when it comes to something as life-changing as a cancer diagnosis, whatever type it may be. "Saying 'I'm cancer free' is never an option. For the rest of my life I do annual testing to monitor for regrowth and to adjust my thyroid levels," Joanna says.

Feedback 3: Consider the patient's preferences and potential frustrations

What didn't help Kandace? Not getting a referral that fit with what she was looking for. "The doctor totally didn't get my personal preference for evidence-based treatments over the doctor's bedside manner," she says. "It would have been better had the doctor reviewed the top two or three gyn-onc programs in our area."

Kandace eventually had three physicians as part of her care team: a gyn-onc surgeon, a medical oncologist, and a radiation oncologist. The one doctor who was always in a rush and didn't listen carefully to her complaints or concerns was a source of frustration for Kandace. "Brushing over the long-term side effects of radiation wasn't helpful either," she says.

Feedback 4: Patients aren't the only ones affected

A cancer diagnosis can concern many other people besides the patient: a partner, children, colleagues, caregivers, and others.

Kandace's supportive gyn-onc surgeon kept this in mind and helped her secure an early morning appointment slot so she could still get to the office without missing too much work or disrupting her kids' schedules.

"I preferred going to appointments alone so that my husband could keep the kids on a stable routine," says Kandace.

She also spoke highly of Cancer & Careers, a resource for those living and working with cancer. Kandace was grateful to the provider who recommended this invaluable resource, as working while undergoing treatments was a priority for her.

Conclusion

Each patient is different, and cancer affects each patient differently. But one thing all cancer patients agree on? Clear, compassionate communication and an understanding of preferences and priorities are the best ways to establish a proactive care partnership.

*Names changed to protect patient privacy