If a woman has one breast removed, the remaining breast is screened by mammogram (and sometimes MRI if a woman is high-risk), but there are no imaging tests recommended for women who've had a double mastectomy, said Dr. Patricia Ganz, UCLA professor and a director at the Jonsson Comprehensive Cancer Center.
Other tests, including bone scans, liver ultrasounds, CT scans and tumor markers, are not recommended for routine breast cancer follow-up in patients with no symptoms, the American Society of Clinical Oncology says.
A new blood test can detect cancer cells that have broken free from a tumor in the breast and help identify patients with a high risk of recurrence, researchers recently reported in The Lancet Oncology. But the test may lead to overtreatment, and the findings need to be confirmed by larger trials. The test is commercially available and has been approved by the Food and Drug Administration for use in metastatic breast cancer patients.
Other blood and urine tests shed light on what's going on inside the body, but with the exception of blood cancer, these tests generally can't confirm a recurrence.
Get help: Two years after cancer treatment, patients often transfer from an oncologist to a primary care doctor and gynecologist. But there are concerns: One survey showed 94 percent of primary care doctors were unaware of the long-term side effects of four commonly used chemotherapy drugs. Research has also shown that the lack of communication between oncologists and primary care physicians makes survivors less likely to receive adequate post-treatment care, according to the Institute of Medicine.
Gynecologists can thus play a critical role in the transition, especially since patients often struggle with menopausal symptoms and sexual difficulties.
Amanda Nixon, 34, a survivor outreach advocate for the Keep A Breast Foundation in San Diego, used a psychosocial oncologist to help with her fear of recurrence. Therapists and social workers can help with anxiety, anger and managing guilt when friends pass away from cancer. Exercise aids weight loss, relieves stress and can help balance mood swings.
Lasting side effects
The scope of physical complications after treatment is "shocking and upsetting" said Kathryn Schmitz, a cancer and exercise researcher at the University of Pennsylvania School of Medicine. Her research has shown more than 60 percent of breast cancer survivors report at least one treatment-related complication even six years after their diagnosis.
The problems — stemming from chemotherapy, surgery, radiation treatment and hormone therapy — rarely exist in isolation: For instance, many women with the painful limb-swelling condition lymphedema also struggle with fatigue and bone health challenges, according to Schmitz's study, published in April in the journal Cancer.
Care for these problems is fragmented, and some doctors believe certain problems can go untreated. Further, oncologists and surgeons are often poorly linked to physical therapists who may be able to help with side effects, the Cancer study showed.
Side effects such as insomnia, fatigue and difficulties with memory and concentration can also wreak havoc in the workplace. Financial pressures often force women back to work before they're ready, and the Institute of Medicine found that survivors experience subtle employment discrimination.
"My professional life has been affected by chemo-brain, lymphedema, insomnia and premature aging such as bone and muscle loss, as well as attending several doctors' appointments for follow-up care," Nixon said.
Women face the potential of abrupt-onset menopause and its symptoms, including hot flashes and sleep issues. These symptoms may decrease over time. Treatment can also affect fertility and the menstrual cycle, and in general, survivors should wait until at least the two-year disease-free point before trying to get pregnant, Salani said, because the mother's survival rate is higher.
Get help: Physical therapists can help reduce pain, improve flexibility, strength, endurance and range of motion. Therapists who are certified in lymphedema management (clt-lana.org) work with patients to provide bandaging, manual lymphatic drainage, exercises, self-massage training and compression-garment fitting, which can help with repetitive action and air travel.
Schmitz strongly advocates exercise, which builds strength and stamina and helps with fatigue, insomnia and mental clarity. If you can't find a certified cancer exercise trainer, try looking for fitness trainers who are affiliated with your hospital, said Vik Khanna, a St. Louis-based exercise specialist and CET.
Mind-body therapies, including yoga and meditation, can help with both physical and emotional issues. Meditation, for example, has been shown to help with menopausal symptoms. Psycho-oncologists can address the effects of chemo-brain and cognitive problems due to radiation and chemotherapy drugs.
For fertility or pregnancy issues, consult with an oncologist, gynecologist or fertility specialist. Fertilehope.org provides a list of fertility specialists and sperm banks, financial support and information on risks, and options.
Body image, mood, libido
Treatment drastically changes the body and a woman's relationship to it. Chemotherapy can age the body the equivalent of a decade over the course of just one year. In addition to the possible loss of one or both breasts, survivors also deal with weight gain, a common treatment side effect that may be exacerbated by a drop in physical activity, due to fatigue, nausea and pain. Treatment scars can be jarring reminders.