Once out of treatment, breast cancer patients come to a tough juncture.
After months of close monitoring by an oncology team, many are suddenly deemed “survivors” and set free. While some continue to see their oncologist every few months, others transition back to a primary care physician who may or may not know about the raft of treatment side effects they can face, let alone how to manage them.
Even survivors themselves may not recognize the full collateral damage wrought by surgery, chemo, radiation, endocrine therapy and reconstruction. Sure, many can see they’re more anxious or depressed, have trouble focusing and/or feel tired all the time. But what about achy joints, tingling hands and feet, a limb that begins to swell years after surgery or more serious concerns like sudden shortness of breath?
In other words, what, exactly, is “normal” for a breast cancer survivor? And what can doctors do about it?
Two of the country’s leading cancer organizations have teamed up to answer these questions — and ease the transition after patients leave the treatment “nest” — by creating clear, concise and comprehensive care guidelines for breast cancer survivorship.
Issued jointly by the American Cancer Society and American Society of Clinical Oncology and developed by a multidisciplinary group of cancer experts (including one survivor), the guidelines, published Monday, are primarily aimed at primary care physicians, although they can also be used by patients, oncologists, nurses and other health care providers.
“More and more long-term care is being handled by non-oncologists, so both organizations thought it was important to offer guidance — a set of comprehensive recommendations to health care providers caring for patients with breast cancer,” said Dr. Gary Lyman, a breast cancer oncologist and public health researcher with Fred Hutchinson Cancer Research Center, who helped create the guidelines. “This is the first collaboration between ASCO and ACS and we hope that there will be others, particularly around survivorship issues.”
Up until now, PCPs have had to rely on what Lyman called “piecemeal” information — multiple, and at times conflicting, recommendations issued by a host of professional organizations.
The new guidelines are much more streamlined, offering an in-depth, evidenced-based set of recommendations covering nearly 30 areas of health concerns — from chemo brain and cardiotoxicity to bone loss and sexual health — with specific clinical recommendations on how to tackle each one.
Written for doctors as well as patients (there’s very little jargon), the guidelines might be termed a “What to Expect When You’re Expecting” for breast cancer survivorship, with pretty much everything a survivor and her health care providers need to know moving forward.
The recommendations include information on surveillance for breast cancer recurrence, including what lab tests and scans should and shouldn’t be done; screening for second primary cancers such as cervical, colorectal, endometrial and lung; and extensive guidance on the management of long-term and late effects of treatment, including body image issues, lymphedema, cardiovascular issues related to treatment, chemo brain, anxiety and depression, fatigue, bone health, musculoskeletal health, pain and neuropathy, infertility, sexual health and premature menopause and hot flushes.
“This is an invaluable resource [for] breast cancer survivors, which is the largest group of survivors that primary care providers will see,” said Dr. Karen Syrjala, clinical researcher and co-director of Fred Hutch’s Survivorship Program. “It provides a definitive update on the state of the science for caring for breast cancer survivors, based on a systematic review of published evidence. Even more important, it lays out guidelines for caring for those survivors based on this latest evidence.”
Syrjala said the document contained a “huge amount of information” and lauded ASCO and the ACS for joining forces to address the needs of cancer patients and long-term survivors.
“This speaks to the importance of … not forgetting the needs of those we’ve cured or who are surviving for many years after a diagnosis,” she said.
According to the American Cancer Society, there are currently 2.8 million breast cancer survivors in the U.S.
Lyman, co-director of the Hutchinson Center for Cancer Outcomes Research, said the new guidelines will have “considerable impact across multiple disciplines,” but acknowledged that some recommendations might be hard for patients to understand.
Many patients, for instance, grow accustomed to regular scans and/or tumor marker tests since these can be common during staging and treatment. After treatment, survivors may expect (and want) these tests to continue; with no standardized recommendations, many in follow-up care still regularly receive them.
The new guidelines recommend no tumor marker (or biomarker) tests and no MRI, CT or PET imaging unless women are experiencing symptoms. Evidence shows that in asymptomatic patients, these tests offer no benefit and sometimes can do more harm than good (think unnecessary radiation exposure, misdiagnosis and overtreatment).
“This will raise concerns but it’s not new,” said Lyman, pointing to ASCO’s Choosing Wisely recommendations released in 2012.
Syrjala agreed that this particular guideline may get some pushback.
"The difficulty I see with patients is that the guidelines are based on evidence whereas individuals have strong beliefs about what they need," she said. "For instance, PET and other scans provide reassurance about disease progression. I anticipate some resistance by patients to the guideline on that."
Leigh Pate, a 49-year-old Seattle consultant and breast cancer survivor, called the new guidelines a “huge step forward that could improve quality of life for many women after cancer.”
Pate said the recommendation regarding surveillance testing doesn’t alarm her since “current tumor marker testing isn’t reliable.” But she did feel the science behind that finding was outdated.
“The next time these guidelines are issued, I want to see that the science has progressed," she said. "I want to see the next recommendations offer quality surveillance testing that is reliable. And treatments that improve a metastatic cancer patient’s remaining quality of life if it is detected early. And ultimately, a cure for breast cancer once it spreads. That's the real challenge.”
Lyman stressed that the screening guideline was only for survivors without symptoms.
“Importantly, the focus is on survivors, not people going through treatment or with advanced disease or patients with symptoms," he said. "These are asymptomatic individuals beyond their primary treatment.”
As for other tests, both baseline and follow-up bone scans are recommended since many survivors face a heightened risk of bone loss and fractures. Transvaginal ultrasounds, sometimes given to women taking tamoxifen due to its link to uterine cancer, are not recommended unless symptoms crop up.
The guidelines also outline ways in which health care providers can empower patients to bump their chances of survival through lifestyle changes.
“Oncologists are asked nearly every time we see a patient, ‘What can I do in my daily life to reduce the risk from the disease or reduce some of the side effects from the treatment?’” Lyman said. “So we decided we also needed to cover lifestyle issues like diet, nutrition, obesity, exercise and smoking cessation.”
A longtime breast cancer oncologist, Lyman said he definitely empathizes with women who, almost overnight, go from constant monitoring to intermittent surveillance. After all, breast cancer still kills 40,000 women a year.
“The natural thing with a prior diagnosis of cancer is to think every symptom that comes up could be cancer,” he said. “It has to be frightening, particularly if you’re not from a medical background.”
Rather than relying on tests, though, he said clear communication between survivors and their doctors is what’s truly needed.
“It’s the conversations,” he said. “Asking the right questions, developing a relationship with your PCP or your oncologist. If anything new comes up, we want to know about it then we can decide together if we want to take steps diagnostically. In some cases we’ll say, ‘Let’s watch it for a while,’ and in other cases, we’ll say ‘We’re going to send you off to get it X-rayed or scanned.’”
If a doctor doesn't acknowledge or understand the symptoms and side effects related to breast cancer treatment, Lyman said women should "absolutely" find another health care provider who does.
He also stressed the need for personalized or risk-adapted follow-up care since not all breast cancers are alike.
Toward that end, the guidelines emphasize the need for survivorship plans, which lay out the staging and biology of each patient’s cancer along with their surgeries, chemotherapy drugs, targeted agents and doses, type and location of radiation. These cancer care roadmaps, the guidelines state, are an “important tool to facilitate communication and allocation of responsibility during the transition from active treatment to survivorship care.”
Syrjala heartily agrees.
“We still need ‘interpreters,’ clinicians who can synthesize this information for an individual patient and work with both a patient and her health care providers in defining that person’s needs,” she said, pointing to the survivorship plans regularly created at Seattle Cancer Care Alliance, Fred Hutch's treatment arm. “These are an essential piece of the care puzzle needed to bring adequate care to these survivors. “
As for this sea change in survivorship, Lyman said it’s all about acknowledging and addressing the aftermath of current cancer treatment.
“I’d like to see this be the basis of a large, broad educational effort, primarily directed to PCPs and other non-oncology specialists who see breast cancer survivors after their early treatment,” he said. “It’s essential they are knowledgeable about the vast array of symptoms and questions patients have. I think it can’t help but improve care and reduce complications and needless testing.”
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Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at email@example.com.
Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.