At Diagnosis, What Do Cancer Patients Want?

A Q&A with Laura Benson, RN, MS, ANP, president of Conversations in Care, LLC;

Q: In our digital communication world of 2019, some patients may receive the initial message that YOU HAVE CANCER by cell phone, text, email, or even voice mail. When this happens, what do patients most want, and how can that best be accomplished?

A: When I first read your question, I was immediately brought back to a National Cancer Survivors Day around 1988. During the open microphone portion of the program, a patient bravely rose to address the audience. She proceeded to tell us she didn’t know she had cancer until she received the Survivors Day invitation, whereupon she turned to her attending physician and asked, “Well doctor, do I have cancer?” Since then, communication in today’s digital age has not seen a vast improvement. Indeed, a recent report out of California tells the tale of a patient and family learning he was dying via a video robot interaction.

What has not changed over the decades is the need for information that is easily understood, easily accessible, scientifically accurate, and delivered with compassion and connection. The dawn of the “Dr.Google” age has brought new and unique challenges. Continue reading…

The Crucial 90% Missed by Doctors on Computers

A Q&A with Kevin B. Knopf MD, MPH, chairman of hematology and oncology at Highland Hospital in Oakland, California;

Q: A successful patient-physician relationship depends upon effective bidirectional attention and mutual understanding. Many patients and physicians believe that common current versions of mandated electronic health records (EHRs) severely impede that interaction, especially eye contact. How can a competent and caring clinical oncologist overcome that problem?

A: For all my faults as a doctor, and I’m sure there are many, there is one thing I think I do correctly, and that is I am never on a computer in front of a patient.

I hear from many colleagues that they can be efficient and personable while going back and forth from the patient to their electronic health record (EHR)—and it is true there are various levels of skill here. However, none do as well, in my opinion, as a computer-free patient environment. I say this from my side as a patient having seen dozens of doctors myself—nothing compares to a doctor who spends all of their time looking you in the eye and interacting face to face. This human contact costs nothing, and yet is so vital. Continue reading…

Breast Cancer Patients Forego Post-Surgery Treatment Due to Mistrust, Study Suggests


“Nearly one-third of women with breast cancer went against their doctor’s advice and chose not to begin or complete the recommended adjuvant anti-cancer therapy to kill residual tumor cells following surgery, according to a study led by a Johns Hopkins Bloomberg School of Public Health researcher.

“A survey that included 2,754 breast cancer patients in Florida and Pennsylvania during a two-year period found that this ‘treatment discordance’ – not following a doctor’s recommended treatment plan in its entirety – was more likely among patients who reported a general distrust of medical institutions and insurers. The patients’ trust or distrust of their own doctors did not seem to be a factor.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.

After Mastectomies, an Unexpected Blow: Numb New Breasts


“After learning she had a high genetic risk for breast cancer, Dane’e McCree, like a growing number of women, decided to have her breasts removed. Her doctor assured her that reconstructive surgery would spare her nipples and leave her with natural-looking breasts.

“It did. But while Ms. McCree’s rebuilt chest may resemble natural breasts, it is now completely numb. Her nipples lack any feeling. She cannot sense the slightest touch of her breasts, perceive warmth or cold, feel an itch if she has a rash or pain if she bangs into a door.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.

Delay in Treatment, Missed Diagnostic Testing Found Among Lung Cancer Patients

“Patients undergoing surgery for lung cancer may wait too long to receive treatment, and too many patients skip vital diagnostic steps that are needed to help determine the best possible treatment, according to an article in the August 2015 issue of The Annals of Thoracic Surgery.

“The 5-year relative survival of all patients diagnosed with lung cancer in the United States is approximately 17%, according to the National Cancer Institute, and has changed little in the last 30 years. Fewer than half of all patients who undergo surgery for lung cancer survive as long as 5 years.

“Nicolas Faris, MDiv and Raymond Osarogiagbon, MBBS led a group of researchers from Baptist Cancer Center and the University of Memphis in Tennessee, who reviewed hospital records for all patients who underwent surgery for suspected lung cancer at Baptist Memorial Hospital between January 2009 and June 2013. Using only patients who had surgery for suspected lung cancer, the researchers examined how long it took to begin care and what steps were taken to determine appropriate treatment.”

Data Shows Disconnect Between Healthcare Professionals and Patient Perceptions of Impact of Chemotherapy and Radiotherapy-Induced Nausea and Vomiting

“Norgine B.V. has presented new data highlighting a perceptual gap between healthcare professionals and patients in terms of the incidence and impact on patients’ daily life of chemotherapy and radiotherapy induced nausea and vomiting (CINV/RINV).

“These data were sponsored by Norgine and presented at the joint Multinational Association of Supportive Care in Cancer (MASCC) / International Society of Oral Oncology (ISOO) 2015 Annual Meeting.

“The data demonstrate that physicians and oncology nurses overestimate the incidence of CINV/RINV, but underestimate the impact of the condition on patients’ daily lives (p1

“In addition, just 38% of patients reported full compliance with physicians’/nurses’ guidelines when self-administering anti-emetic medication, compared with 60% estimated by physicians and nurses. Leading factors given for poor patient compliance included reluctance to add to a pill burden and fear that swallowing itself would induce nausea/vomiting.”

Living With Cancer: Patients on Our Own

“I had to take my husband back to the hospital for a second operation on a torn tendon, but the pills from the cancer trial had not yet arrived. Surely doing without one or two days of the drug would not necessarily lead to a recurrence, I told myself in an effort to still rising waves of anxiety. There were more pressing matters to attend, namely righting wrongful care.

“Two weeks earlier, a fall on the basement steps led to an operation on Don’s knee. The surgeon called it a success and sent us home. After I wrote an essay about my welcoming the prospect of caring for my beloved caregiver, the first reader responded: ‘No one has training in these tasks, especially families who are too emotionally connected to really be effective.’ A nurse judged our being entrusted with home care ‘dangerous.’ They were both spot on.

“The first night home in a brace, Don’s leg buckled beneath him and he fell again. At the ER, he was given a longer brace. However two arduous weeks later — while we thought the knee was healing — the orthopedic surgeon explained that the tendon had torn again probably because of that fall two nights after surgery: Don would need a reoperation.”

Cured From Cancer, Almost

“I had to admit I was more than a little excited to see my next patient. This was a big day, for both of us.

“Five years earlier, when he was 68, he had come to the emergency room, feeling terrible. His white blood cell count was higher than his age, and he was profoundly anemic — really, to a degree that was almost incompatible with life. He was transferred to our hospital, where we performed a bone marrow biopsy that clinched the diagnosis of acute leukemia.

“ ‘You sat on my bed,’ he said to me, ‘and you gave it to me straight. You laid out my options.’ He stared up toward the fluorescent lights in the clinic room, thinking back to this seminal moment. His wife sat next to him, focusing on his face, her smile frozen as she probably thought about that same moment from her own perspective.

“For people approaching their eighth decade, the decision of whether or not to take chemotherapy for leukemia is anything but straightforward. The treatment can be brutal, confining a person to his or her hospital room for a month, and it can accelerate a death that might have taken months if the leukemia were left to its own devices. People go through with it to try to win the golden ticket — the chance to be cured of leukemia. In someone my patient’s age, that occurs only 5 percent of the time.”

A Third of Breast Cancer Patients Concerned About Genetic Risk

“A new study from the University of Michigan Comprehensive Cancer Center finds that many women diagnosed with breast cancer are concerned about the genetic risk of developing other cancers themselves or of a loved one developing cancer.

“Overall, 35 percent of women with breast cancer expressed a strong desire for genetic testing, but 43 percent of those women did not have a relevant discussion with a health care professional. The study also found that racial minority patients with a strong desire for testing were less likely than white patients to discuss it with a professional, even though studies show that minority patients are not at lower risk for these mutations.

” ‘Our findings suggest a marked unmet need for discussion about genetic risk,’ says study author Reshma Jagsi, M.D., D.Phil., associate professor of radiation oncology at the University of Michigan Medical School.

“About 5 percent to 10 percent of breast cancer patients have an inherited genetic mutation that drives their cancer. Many of the women who reported interest in genetic testing were at low risk of having a mutation and doctors would not typically discuss genetic risk with them.”