As treatment options for breast cancer have expanded, survival rates have also increased. The National Cancer Institute’s Office of Cancer Survivorship estimates that as of January 2016, there are 15.5 million cancer survivors living in the United States. Of that group, 3.6 million — 23 percent — are breast cancer survivors. The good news is that this population of survivors is expected to continue growing. The bad news is that many survivors face ongoing challenges even after their cancer has been “cured.” This is where survivorship programs can make a big difference in the length and quality of survivors’ lives.
Dori Klemanski, clinical director of survivorship at the James Cancer Hospital and Solove Research Institute in Columbus, Ohio, says that “survivorship starts from the day of diagnosis and continues through the balance of the patient’s life.” She notes that survivorship also extends to “caregivers and family members because we know that they’re also impacted by the cancer diagnosis, treatment and the effects that go along with being treated for cancer.”
[See: What Not to Say to a Breast Cancer Patient.]
Klemanski says the concept of survivorship began to take hold in the 1960s and 1970s as improved treatments led to higher survival rates. It soon became clear that just because these people had survived cancer, it didn’t mean their challenges were over. “Initially, a lot of attention was focused on the physical aspects” of survivorship, what she terms late– and long-term effects of breast cancer treatment. “By long-term effect, I mean something the patient experienced as a symptom that occurred during therapy and continues on after treatment concludes. So neuropathy, for instance, or fatigue, would be long-term effects.” Neuropathy is damage to the nerves of the peripheral nervous system. It’s a common side effect of chemotherapy and other treatments for breast cancer that manifests as tingling, pain and loss of sensation in the hands and feet and can negatively impact the survivor’s quality of life.
With late effect, Klemanski is referring to some of the additional medical challenges some breast cancer patients face that are related to treatment but typically start after it has been concluded. “Some women receive therapies that are toxic to the heart, and so we know that they can have cardiac problems in the future. So that would be a late effect.” Other late effects may include bone loss or osteoporosis, lymphedema (swelling of the arm and hand related to the loss of lymph nodes during surgery for breast cancer), infertility and sexual health issues, cognitive impairment and premature menopause. Managing these late- and long-term effects as they arise and anticipating them before they do become a problem is an important aspect of survivorship.
[See: 7 Innovations in Cancer Therapy.]
Although these physical effects are important, they don’t paint the whole survivorship picture, Klemanski says. “We really do try to focus holistically on the entire patient, so it’s not just acknowledging that there are physical effects but also recognizing that there are some psychological effects.” Depression and anxiety are major issues for many breast cancer survivors, as is the struggle to return to a “normal” routine of life. Klemanski says navigating that “phase between being a patient to actually finishing treatment and trying to figure out how to live life as a survivor” can be the most challenging aspect of survivorship for some patients. “It’s very complex. They’re facing many challenges in how to return and have a balance in their life, and they may be having those late- and long-term effects. That first year out can be difficult for survivors to deal with all the after-effects of cancer and get back into the routine of life,” she says.
Although she says she doesn’t want to over-generalize, Klemanski says the first year after completing treatment for breast cancer is often the most challenging for survivors. “That first year can be a difficult time. They’re reflecting back on what they went through and trying to reintegrate into life. Many people claim that they have a ‘new normal’ now.” A common misconception is that “when treatment ends, life returns back to that baseline before cancer. But that’s very rarely the case. Certainly, some people can have cancer that’s caught at an early stage and they’re doing well and they can return to what they would consider who they were before. But for the most part, cancer changes people forever. And it takes an emotional and spiritual adjustment to really find who they are with the experience they just went through.”
To help survivors cope with all of these potential issues and changes, Klemanski encourages survivors to communicate with their care teams. “The thing we advocate the most is for them to have a great communication pattern with the oncology team. We tell them to speak up before they feel overwhelmed and if they notice things like numbness and tingling or that they’re being emotionally overwhelmed. Share that information as soon as possible because there are interventions we can do.”
In December 2015, the American Cancer Society released a Breast Cancer Survivorship Care Guideline to help breast cancer survivors and their doctors manage their care long-term. The guideline offers recommendations on screening for new or recurrent cancers, how to manage side effects of treatment, how to make and maintain healthy lifestyle changes and how best to coordinate care among the various doctors survivors need to keep in touch with.
[See: A Tour of Mammographic Screenings During Your Life.]
Some of the interventions that breast cancer survivors may pursue include counseling, nutritional advice, increasing exercise and physical activity levels and reducing stress. “We try to talk about giving themselves permission to take a while to heal.” Klemanski says that just as physical scars need time to heal, emotional ones “can take that much longer for those to heal as well. Acknowledge it and be aware that the adjusting will take time.” The James offers yoga, art therapy or music therapy classes for survivors among other programs. “We also try to stress the importance of making sure their physical symptoms are addressed. If they’re experiencing fatigue, making sure it’s managed and making sure they’re seeking out things in a healthy coping mechanism ” are critical to a healthy survivorship.
In addition to open communication with the care team, Klemanski says it’s important for survivors to seek “open communication with the relationships in their life” and to find support from family members and friends.
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What Does Survivorship Mean for Breast Cancer Patients? originally appeared on usnews.com
