Post-Breast Cancer Guidelines Are Crystal Clear, but Are Providers Listening?

Miscommunication may be the only cause of ambiguity

Toni L. Kamins, MA


June 22, 2017

Recent research into post-cancer treatment standards found that guidelines vary widely and can be vague and even confusing for primary care providers (PCPs) and their patients. The findings, published in the May 2017 issue of JAMA Internal Medicine,[1] have raised concerns about the absence of clear guidelines in nine types of cancer: breast, colorectal, lung, prostate, melanoma, uterine, bladder, thyroid, and testicular. The authors found that "ambiguous recommendations were present in 83% of the guidelines."

Similarly, findings presented at the Cancer Survivorship Symposium earlier this year revealed that there may be some confusion about which providers are responsible for breast cancer follow-up care—PCPs or oncologists. Not everyone agrees, however. Some experts vehemently argue that the guidelines could hardly be more clear.

Tari King, MD, associate division chief for breast surgery at Brigham and Women's Hospital in Boston, Massachusetts, told Medscape that "breast cancer is one area where there have been multidisciplinary groups to provide standardized guidelines." She went on to say that "if you do a literature search, as the authors of the JAMA study did, you can find different approaches to follow-up cancer care in general." But if you look at breast cancer alone, you will find a very good set of guidelines[2,3] that provide comprehensive care and follow-up for women. "The JAMA article gives the situation a negative spin," she said, "but it doesn't really apply to breast cancer."

Dr King pointed out that "survivor follow-up has evolved over the years as treatment has evolved. Twenty years ago we questioned whether or not to have follow-up imaging and blood work." Breast cancer is the most common type of noncutaneous malignancy among women, but studies have shown that women who had these follow-up tests did not have better outcomes in the long term than women who did not get tested, she said.

Each cancer group has done its best to make sense of the data, and it has been challenging to find a single clear set of follow-up guidelines, according to Dr King. But breast cancer specialists have tried to synthesize all of the available data and have come up with a solid set of guidelines.

For example, the National Comprehensive Cancer Network (NCCN) Guidelines[2] include information on recommended scrutiny for recurrence of new cancers. The NCCN also includes symptom-specific survivorship care guidelines that address a range of issues, including "anthracycline-induced cardiac toxicity, anxiety and depression, cognitive function, fatigue, pain, sexual function, sleep disorders, healthy lifestyles and immunizations and infections."[3] The American Cancer Society/American Society of Clinical Oncology (ACS/ASCO) Breast Cancer Survivorship Care Guideline[3] takes these recommendations a step further, providing "comprehensive, holistic recommendations specific to post-treatment breast cancer clinical care," to improve post-treatment primary care of breast cancer survivors.

Shifting the Burden Away From Primary Care

Polly Niravath, MD, breast medical oncologist at Houston Methodist Hospital in Houston, Texas, told Medscape that in the past, there were some shortcomings in survivor care. When a patient returned to the PCP after cancer, "more of the burden was shifted to the PCP." Oncologists were not always good at providing follow-up guidelines. That has changed, and now "oncologists have set the standards." This is vitally important because the PCP may be unaware of exactly what to monitor and may order unnecessary tests out of an abundance of caution. Of course, communication is key. The patient and the PCP will need to be informed lest the oncologist's guidelines remain unknown and go unheeded.

Dr Niravath also stressed the importance of monitoring breast cancer survivors for the full range of general health concerns as well as the serious ones, such as diabetes, cardiovascular disease, and colorectal cancer. "A survivor is more likely to die from cardiovascular disease [than from cancer], as these things can be overlooked when a history of breast cancer is present and noted by the PCP."

"We're fortunate that advances in technology allow us to constantly review and update the guidelines based on new information," said Marleen Meyers, MD, director of New York University Langone's Perlmutter Cancer Center Survivorship Program in New York City. In the case of breast cancer, "we have been following survivors for decades" and have very good data on which to base survivor-care guidelines. "Because there are so many breast cancer survivors, survivor-care guidelines are a very big issue and have become comprehensive."

Survivorship Care Moves to the Fore

Shikha Jain, MD, oncologist and hematologist at Chicago's Northwestern Memorial Hospital, pointed out that survivorship care is a fairly recent phenomenon simply because so many patients are living cancer-free much longer than they used to. Dr Jain told Medscape that "ASCO recommends that each patient have a survivorship visit with her doctor—an hour-long general discussion about testing and routine follow-up, and a conversation about the symptoms of reoccurrence. This is very important in order to minimize unnecessary testing."

NYU Langone's Dr Meyers emphasizes the need for the PCP and the patient's cancer team to have very clear lines of communication, and that the cancer team should be responsible for creating each patient's survivor care plan for patient and PCP. This plan should enumerate specific points, such as screening for other cancers and promoting healthy lifestyle choices going forward.

Dr Meyers noted that "most women with estrogen receptor–positive (ER positive) breast cancer, the most common form, will be in treatment for 5-10 years and will make the transition to a survivorship program following the end of cancer treatment.

Patricia Ganz, MD, senior author and co-chair of ASCO's breast cancer survivorship guidelines,[3] told Medscape that "many care guidelines are not evidence-based. But in the case of breast cancer, we've been monitoring survivors for so long that we have good evidence." She warned that great care should be taken when looking at guidelines that are not based on clear evidence. "Sometimes the person writing the guidelines or someone on the guidelines committee may remember something in a particular way, and if that person is a thought leader he or she can have a lot of sway" on the way the guidelines are written, even when the memory does not agree with the evidence.