What Can Patients with Cancer Teach Their Oncologists?

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There was a pervasive theme underlying the various presentations given during the 25th Annual MD Anderson Network Cancer Survivorship Conference that took place in late September in Houston, TX. It was a theme not mentioned in any promotional materials heralding the event.1,2

I sensed this theme, but I couldn't identify it at first…

That is, until I spoke with Lorraine Reitzel, PhD, an Assistant Professor in the Department of Health Disparities Research at MD Anderson Cancer Center (MDACC). Dr. Reitzel, who was also a presenter at the conference, told me the story of a woman she'd known named Mary Beth Shinebaum.

“I'm sorry, it's hard for me to say this without crying,” Dr. Reitzel said. “Mary Beth was diagnosed with pancreatic cancer and her deterioration was very rapid. She always had a deep sense that her doctors hadn't asked the right questions about what might have influenced her cancer, so on her deathbed, unable to move, she dictated to her husband a comprehensive cancer patient intake questionnaire.”

What Mary Beth Shinebaum composed just before her death at the age of 68 was a wish list of questions she thought she should have been asked upon intake after her cancer diagnosis. Ms. Shinebaum's suggested questions included: How often do you use a cell phone? How much soda do you drink? Have you ever lived next to high-voltage transmission wires or a corn field which was fertilized by a crop duster? She thought these questions might give doctors better guidance for the diagnosis of future patients with cancer. Questions which, had they been asked to her, might have had an impact on her own survival. 

Dr. Reitzel's presentation at the M.D. Anderson Survivorship conference was titled “Can your neighborhood affect your survival or chance of getting a second cancer?” The data she presented correlated the instances of head and neck cancers with the socioeconomic conditions of the patients. In short, those surrounded by poor socioeconomic conditions—even if they are affluent—face a greater risk of developing head and neck cancer.

The story of Mary Beth Shinebaum was not part of Dr. Reitzel's presentation, but it obviously had a deep influence on her. It revealed that individuals with cancer are gaining a voice from their experiences and may offer oncologists important insight into how cancer diagnosis and treatment should be approached.

“Cancer survivors are becoming a powerful voice in the fight against cancer,” Dr. Reitzel said. “The details of cancer survivorship have a lot to offer practicing oncologists by way of practical insight into what helps patients fight cancer and recover, and what brought about cancer in the first place.”

Patients as Their Own Advocates

Dr. Dalliah Black, MD, FACS, Assistant Professor in the Department of Surgical Oncology at MDACC, gave a presentation about current disparities in breast cancer care. 

Much like Dr. Reitzel, Dr. Black offered data strictly related to her presentation topic, but spoke candidly with ChemotherapyAdvisor.com after the fact. An important subtext of Dr. Black's message was that patients with cancer, as well as cancer survivors, have the power to influence the decision making of practicing oncologists, and that being informed about their disease can make a real difference in how both they and their doctors approach treatment.

“There is a sudden groundswell of patients going through different cancer treatments and recovery regimens who have a lot to say, and oncologists should listen,” said Dr. Black. “They want doctors to know they are treating an entire person. And if we remember survivorship issues, it reminds us that this is an entire person who will advance beyond my goal of just curing their cancer,” said Dr. Black.

To make their point, patients are more frequently becoming the first to ask about the intangibles of their condition, including the possible reoccurrence of disease, infertility issues, and changes to long-term prescription drug regimens. Dr. Black, in particular, has met with breast cancer survivors who felt good about their tamoxifen use and wanted to know if they could keep taking the drug, unaware that recent clinical trials determined that 10 years of tamoxifen versus 5 years reduced the reoccurrence of breast cancer from 25.1% to 21.4%.3 The gap in communication about these standards of care is narrowing now that patients and survivors are speaking out more, said Dr. Black.

Challenging Standards of Care

Likewise, Beatrice Edwards, MD, MPH, FACP, an Associate Professor of Geriatric Medicine at MDACC who gave a presentation on bone health in cancer survivors, touched on her growing concern about standards of care and current treatment guidelines, as well as her observations of how these standards were often being challenged by cancer survivors.

“Updates to current guidelines of standards of care are not based strongly enough on the opinions and experiences of cancer survivors,” said Dr. Edwards. She also mentioned that drugs like denosumab (Prolia®; Amgen Inc) can help prevent bone loss during chemotherapy, but prescribing it during treatment is not part of the current standard of care most doctors follow. Another concerning fact is that prevention of bone loss during cancer treatment was only briefly mentioned in guidelines for postmenopausal osteoporosis, she added.  

“I think we need to do more research in this area, and there needs to be more collaboration between doctors and their surviving patients,” said Dr. Edwards. 

Listening to what patients and survivors have to say and passing that information along can help oncologists better personalize care. The presenters who spoke to ChemotherapyAdvisor.com agreed this was the true take-away from the conference. This upsurge of important patient feedback is directly related to the fact that there are simply more cancer survivors, said Dr. Edwards. And these survivors are speaking out more than ever before.

“We have not had a generation of cancer survivors before now. So, for oncologists to keep abreast of what they could learn from this growing population, there needs to be much more collaboration between themselves and cancer survivors.”

Without being scripted in advance, the power of knowledge patients with cancer can offer oncologists and clinicians prevailed without dispute as the underlying theme of this year's MD Anderson Network Cancer Survivorship Conference—a theme which will undoubtedly gain more attention in the oncology community as the number of people who become cancer survivors increases.


1. The University of Texas MD Anderson Cancer Center. 2013 Anderson Network Cancer Survivorship Conference registration. http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/patient-and-family-support/anderson-network/support-programs/patient-conference.html. Last Accessed October 2, 2013.

2. The University of Texas MD Anderson Cancer Center. 2013 Anderson Network Cancer Survivorship Conference agenda. http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/patient-and-family-support/anderson-network/support-programs/agenda.pdf.  Last Accessed October 2, 2013.

3. Andrew Pollack. Bigger Role Seen for Breast Cancer Drug. The New York Times. December 5, 2012 issue. http://www.nytimes.com/2012/12/06/health/extended-use-of-breast-cancer-drug-suggested.html?_r=0.  Last Accessed October 2, 2013.

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