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What comes after ‘You’ve got cancer’ is critical – but often not heard or said

They’re some of the most devastating words in medicine: “You’ve got cancer.”

No matter how gently or optimistically the doctor delivers the news, it’s often a deafening blow that drowns out any follow-up questions and answers.

Cancer conversations have always been difficult, especially when dealing with the prognosis for survival. There can be a jarring disconnect between what a doctor says and what a patient hears.

“This is a particularly fraught area,” said Dr. Richard Kravitz, a UC Davis medical school professor and co-chairman of research for UCD’s Department of Internal Medicine. “There is a lot of anxiety and terror around serious illness like cancer.”

Oncologists are not always direct in speaking with patients about their long-term prognosis, Kravitz noted, or patients may simply not be receptive to hearing.

“Maybe it wasn’t discussed,” he said. “Or it was discussed but it didn’t register or was couched in a way that was communicated poorly. Or the patient wasn’t in a place where they were ready to accept it.”

That disparity showed up vividly in a recent study by medical school researchers at the University of California, Davis, and the University of Rochester.

In a three-year study that concluded last October, they looked at 236 patients with advanced cancer and assessed their two-year prognoses. More than 68 percent of patients thought they had a far better chance of two-year survival than their doctors did. Of those, nearly 90 percent did not realize that their expectations differed from their doctors’ predictions.

In clinical trials and studies underway across the country for all types of cancers, doctors and researchers are continually seeking ways to improve cancer conversations. It’s considered critical because patients and doctors need to be on the same page when determining treatment for advanced cancer.

“Honoring patients’ wishes for medical interventions near the end of life requires high-quality communication as death approaches and treatment tradeoffs evolve,” noted the study, published last month in the medical journal JAMA Oncology. “For patients who wish to be involved in their treatment decisions, communicating effectively about survival prognosis is crucial.”

For instance, advanced-stage patients who have overly optimistic ideas of long-term survival might opt for more aggressive care that may not help, with side effects that could make them feel worse and unable to have meaningful conversations with family. Or they might be less likely to enter palliative care or hospice early enough.

The tough talks are often as difficult for physicians as for patients.

“As a doctor, it’s hard,” said Kravitz. “There’s a fear that patients will become withdrawn or depressed and not participate in their care,” if given a dire prognosis,” he said. There’s also concern that patient satisfaction declines when a physician delivers bad news.

Ask any cancer patient and they can recall exactly where they were and how they felt when told their diagnosis. For Laura Tyrrell, a Granite Bay resident who’s been battling breast cancer and other forms of cancer since 2000, the life-changing news was delivered in a perfunctory phone call from her doctor’s nurse. The call was primarily about scheduling the next appointment.

When the call came, her husband was at work and her three young kids were in school. Tyrrell was by herself.

“It was terrifying and a complete, utter shock,” she said. “To be there alone and told that news, it completely undid me.”

Tyrrell, who’s met with lawmakers in Sacramento and Washington, D.C., as a volunteer advocate with the American Cancer Society, said some doctors fail to address the fears that many patients face.

“You need to be your own advocate,” she said. Tyrrell has endured seven cancer surgeries and 10 different regimens of chemotherapy. “You should walk out of your doctor’s office feeling you’ve been heard, cared for and listened to.”

Tyrrell and the American Cancer Society support the use of palliative care, a medical team approach to provide emotional, physical and social support to those dealing with chronic illnesses, starting with their initial diagnosis.

Earlier this month, California lawmakers passed a joint resolution urging the state Department of Public Health to create an advisory council to develop better solutions for palliative care for chronically ill patients. The resolution, by state Sen. Richard Pan, D-Sacramento, is similar to palliative care initiatives in other states.

Tools exist to make cancer conversations easier and more productive. The American Cancer Society, for instance, has a daily, 24-hour helpline staffed by specialists who can answer questions at (800) 227-2345.

Sometimes patients devise their own solutions.

Jen Kraemer-Smith, creative director for a New York-based kids magazine, was spurred to action by her breast cancer diagnosis in 2012, when she was 38 and just a few weeks pregnant with her third child. She and her husband were overwhelmed as they sat together in the doctor’s office, hearing that her breast lump was a cancerous tumor.

“It was like a buzzing in my ears,” she recalls. “Whatever they were telling me, all I could hear were alarm bells going off.”

The couple left the office, sat in their car and cried. Eventually, she underwent a mastectomy, aggressive chemotherapy and radiation. The couple’s daughter, now 3, was born healthy.

When her cancer returned in 2014, Kraemer-Smith decided to focus on something positive for cancer patients.

In January, she and a colleague debuted The Cancer Conversation, a set of 40 cards designed to give patients, of any age and with any type of cancer, answers to practical concerns and emotional issues that doctors may not have time to discuss during office visits. (For details go to: www.thecancerconversation.com)

“At every oncology office, you get that generic manual about the disease, but it doesn’t answer all the questions,” said Kraemer-Smith, now on a two-year clinical trial for her cancer recurrence.

She vetted the content with medical professionals, including her oncologist at New York-Presbyterian Hospital. The topics range broadly, from what to bring to your appointment (a notepad and another person to be your ears) to how to graciously accept help from friends or fend off intrusive comments.

“People ask you questions without a filter, about things you’re not prepared to answer,” especially in front of children, Kraemer-Smith said. “Be prepared with a phrase to shut a person down,” she said. “Mine was: ‘I’ve shared with you everything I’m comfortable sharing. Please don’t ask me anything further.’ 

Oncologists have long been aware of the need for improving communication skills. Numerous studies and clinical trials advise doctors about the optimal ways to deliver bad news. Medical schools and nonprofits like VitalTalk.org offer courses and training to teach doctors how to balance honesty with empathy.

As part of the UC Davis clinical trial, oncologists were given communication training, using actors as stand-ins for patients and spouses. Patients were offered coaching to help them focus on what to ask during their medical appointments.

“Discussions between patients and physicians often focus less on prognosis and more on what we’re going to do,” such as surgery and chemotherapy, Kravitz said. “The reality is the discussions need to involve both.”

Conversations are a two-way street and every patient is different. Some want a frank assessment of their future. Others want to focus only on treatments and surviving.

“What’s most important is to know yourself,” Kraemer-Smith said.

“If you function best with a touch of denial that can help you go forward, that’s OK. Part of going forward is always having hope.”

Claudia Buck: 916-321-1968, @Claudia_Buck

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