Cancer survivor: Clinicians can help patients through emotional support, meaningful communication

NASHVILLE, Tenn. — Members of the cancer care team can greatly help their patients by striving to reduce the overwhelming nature of their diagnosis, offering emotional support and engaging in meaningful communication, a cancer survivor told attendees at the Association of Community Cancer Centers National Oncology Conference.

“You are some of the most intelligent people on the face of the earth, but it is important that you remember to be human first and to be compassionate,” Brianne Joseph, LPI — a private investigator and author of the book “Punk Azz Cancer: How Dare you! How to Turn Your Pain into Power After a Cancer Diagnosis” — said during her presentation. “Everyone can see the scars we bear from our mastectomies or our lumpectomies. The scars that are the hardest to heal are the ones you can’t see.”

Joseph was a 38-year-old mother of two with no family history of breast cancer when she was diagnosed with invasive ductal carcinoma in situ.

“I didn’t understand what that meant at my first appointment,” she recalled. “At that moment, all I was interested in was if I was going to die, when I was going to die, and how much time I would have with my babies.

“My doctor was an excellent doctor and he was very professional, but he wasn’t very emotionally supportive to me, and he was very robotic in his explanation,” Joseph said. “Perhaps if my doctor had given me a hug, or at least told me that everything would be OK — after all, I was literally shaking — it would have made a world of difference in that moment.”

In preparation for her presentation, Joseph spoke with several young cancer survivors and asked them what advice they would offer to members of their cancer care team.

Several survivors spoke about the importance of compassion and reassurance, as well as a need for understanding that patients are juggling appointments, paperwork, referrals and disability or employment issues while still trying to learn more about their diagnosis and cope with their emotions.

“Acknowledge the shock,” Joseph said. “Hug us and let us cry. Give us an outlet for the moment.”

She also suggested members of the care team encourage patients to have a relative or friend accompany them to their appointments, and to bring a recorder.

“I really wish I had a recorder at my first appointment,” Joseph said. “I was not in any state of mind to comprehend anything my doctor was telling me. If I had a recorder, I would not have had to call the doctor’s office so often to ask about things the doctor had already explained.”

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Joseph also shared feedback from survivors about things they wished their providers did not say.

One shared the following advice: “Don’t ask, ‘How are you feeling today?’ Instead, say ‘Tell me how you’ve felt this week/month/etc’ or ‘Tell me what symptoms or side effects you have been concerned about. The first asks how you are in the moment, but not what symptoms or side effects you’ve had since your last chemotherapy or since your surgery. It also implies a certain ‘I don’t care’ attitude because it’s something everyone asks, and we just get used to saying ‘I’m fine’ because it’s easier than actually answering, and most people don’t really want to know. But our doctors should want to know.”

Joseph encouraged providers to be aware of the unique concerns that younger patients with cancer face, such as fertility preservation, the difficulties of balancing child care responsibilities while enduring treatment and side effects, and increased concerns about body image.

“It’s equally important that we are given resources to support the emotions we are feeling so we can become empowered,” she said. “Empowerment is simply about giving us the tools we need to so we can become advocates for our own health. It’s about giving us the tools to know what kind of questions we need to ask, and who to ask those questions to.”

She also offered to pieces of advice about communication.

The first is the importance of using layman’s terms.

“Break it down in plain English,” she said. “When you throw a barrage of unfamiliar terminology at us, you can imagine how overwhelming that may be. It’s like trying to decipher a code or learn a foreign language.”

The second is the need for providers to truly listen to their patients.

“A lot of times, the concerns we have may not be cancer related, but we don’t know that. Only you know that,” she said. “Whatever we are feeling or experiencing, it is important that they are addressed and not dismissed.” – by Mark Leiser

For more information:

The Human Face of Cancer. Presented at: Association of Community Cancer Centers National Oncology Conference; Oct. 18-20, 2017; Nashville, Tenn.

Disclosure: Joseph reports no relevant financial disclosures.