After being diagnosed with breast cancer, Hollye Jacobs felt like she lost her health, her breasts and her mind. But when she finished with radiation and started settling in at home, she was hit with another loss: She missed having treatment.
For many breast cancer patients, medical therapies — though grueling — can feel like a safety net. Once treatment ends and life is poised to return to "normal," survivors enter an often bewildering new phase of cancer care. Support dissipates, yet they still may face a host of physical and mental challenges, ranging from fear of recurrence to concerns about leaving their oncologist, questions about fertility, depression and sexual difficulties.
"It's easy to assume that as soon as treatment is done you'll bounce back," said Jacobs, 41, a Santa Barbara, Calif.-based nurse who chronicled her cancer journey on "The Silver Pen" blog. "But healing and recovery is a physical, mental and emotional process that takes an incredible amount of time. The more treatment, the more time it takes to heal."
The number of Americans living with cancer will increase by nearly a third to almost 18 million by 2022, according to a recent report by the American Cancer Society and the National Cancer Institute. Breast cancer survivors are the largest segment of that population, and they range from very young to elderly. Men make up less than 1 percent of all cases.
But even with that many survivors, there remains a lack of clear evidence showing the best way to care for them, and support varies widely, according to a 2005 report by the Institute of Medicine.
"How often do you follow them and what tests, images and screenings need to be done? There are very few guidelines for this," said Sheldon Greenfield, chairman of the institute's committee on cancer survivorship.
First things first
A critical first step after treatment ends is to craft a "survivorship care plan," said Linda Jacobs, the director of the Livestrong Survivorship Center of Excellence at the University of Pennsylvania's Abramson Cancer Center.
Ideally written by the oncologist, this plan should include the type of the breast cancer, which treatments were received (dates and dosages), as well as recommendations for screening and follow-up care to help with mental and physical side effects that may arise.
But not all institutions are equipped to offer the plans, and studies show that fewer than 20 percent of patients receive information on how to create one.
"It's very important," said Linda Jacobs. "Cancer is a trajectory. The end of treatment is not, 'I'm finished and out.' It's the next part of care."
Several organizations, including Livestrong (livestrongcareplan.org) and Journey Forward (journeyforward.org), offer tools to help craft a plan.
Hollye Jacobs' plan involved a diverse group. In addition to working with doctors and nurses, she saw a nutritionist, an acupuncturist for pain, constipation and insomnia, and a yoga instructor. She also used guided meditation with a psychologist to help with debilitating side effects.
"I worked very closely with my team to develop my plan of care," she said. "It's a dynamic, ongoing process, not a static one. Patients have an active role to play."
Still, it's not always obvious how to get the right kind of help. What follows is a look at some common concerns of survivors, as well as potential resources.
Fear of recurrence
Karen Walson's greatest fear is that cancer will return in a different part of her body. It's a legitimate concern: Women diagnosed with breast cancer before age 40 have triple the risk of developing a second primary cancer, and a 4.5-fold increased risk of a subsequent breast cancer, according to the ACS.
"Once women survive one cancer, they need to keep monitoring for other cancers," said Ritu Salani, an assistant professor of gynecologic oncology at the Ohio State University College of Medicine.
Overweight and obese women face an increased risk of recurrence of the most common type of breast cancer (invasive ductal carcinoma), according to a new study published in the journal Cancer. Extra body fat causes hormonal changes and inflammation that may trigger a recurrence, the results suggested.
Regular physical exams and mammography are the cornerstones of breast cancer follow-up care, according to guidelines issued by the American Society of Clinical Oncology. Physical exams, which help doctors detect symptoms or signs of recurrence, should be performed every three to six months in the first three years following treatment and every six to 12 months in years four and five. At the five-year mark, annual exams are in order.