Because of better diagnostic tests and advances in cancer treatments, more people are living longer than ever after being diagnosed with any type of cancer, including breast cancer. Experts estimate that there are about 3.2 million breast cancer survivors in the United States, and the number is expected to increase substantially.
Still, results from national surveys of patients, oncologists, and primary care doctors suggest that there are gaps in long-term care after primary treatment for cancer is completed. This long-term care is called survivorship care.
A study suggests that treatment summaries and a counseling session with a survivorship care nurse can help breast cancer survivors and their doctors better follow survivorship care plans.
The study was published online on April 18, 2017 by the Journal of Clinical Oncology. Read the abstract of “Randomized Controlled Trial of Survivorship Care Plans Among Low-Income, Predominantly Latina Breast Cancer Survivors.’
Breastcancer.org Professional Advisory Board members Patricia Ganz, M.D., professor of medicine and public health at UCLA, and Jennifer Griggs, M.D., MPH, professor of medicine at the University of Michigan, are two of the study’s authors.
Because of treatments they’ve received, many breast cancer survivors have a higher risk of developing other diseases as they age, including high blood pressure, heart disease, and osteoporosis. To make sure breast cancer survivors are regularly screened for these and other diseases they may be at higher risk for, experts have developed the idea of survivorship care planning.
This small study included 196 women who had been treated for stage 0 to stage III breast cancer:
- all the women were considered low-income
- 72.6% of the women were Latina
- the average age was 53 years
- all the women had been treated for breast cancer at two Los Angeles County hospitals
- fewer than 33% of the women worked outside the home
- more than 70% of the women said their health was fair or poor
The women were randomly assigned to one of two care groups:
- 101 women received a personalized treatment summary and survivorship plan that was tailored to their specific needs and concerns. The women also participated in a 1-hour counseling session with a survivorship care nurse. The counseling sessions included coaching on how the women could ask their doctors the three questions that were most important to them, as well as role playing to help the women talk to their doctors and ask that the survivorship care recommendations be implemented. Each woman was encouraged to make an appointment with the doctor that was most involved with her cancer care to discuss the treatment summary and survivorship plan, as well as her question list. The women also were encouraged to take a copy of their treatment summary and survivorship care plan to any future visits with any doctor. These women were called the intervention group.
- 95 women received the usual care. These women were given a personalized treatment summary and survivorship plan after the study was completed.
The researchers wanted to see if the doctors of women in the control group were better at implementing the specific recommendations in the survivorship plan compared to the doctors of the women in the usual care group.
The women in the study were contacted by telephone every 3 months for a year to assess:
- whether a woman’s doctor had implemented a recommendation in the survivorship plan, such as treating hot flashes with medicine
- whether a woman was following the doctor’s recommendation/prescription
The researchers found that the doctors of women in the intervention group were much more likely to implement recommendations in the survivorship care plans compared to doctors of women in the usual care group. Not surprisingly, women in the intervention group were also more likely to follow their doctors’ recommendations/prescriptions compared to women in the usual care group.
“This is the first randomized controlled trial of treatment summaries and survivorship care plans to show increased physician implementation of recommended survivorship care,” the researchers wrote. “Whether these findings are unique to this vulnerable population and their physicians or whether this type of intervention would be more generalizable warrants further investigation in other cancer survivor samples and settings. Future studies should include the impact of such interventions on breast cancer symptoms and examine whether greater benefits would accrue if the interventions were delivered at the point of transitioning off active treatment.”
After your main breast cancer treatment is done, it’s important to focus on what’s now most important: your good health. You have to make sure you get the best ongoing care and live your best life. If you’ve finished breast cancer treatment and your oncologist hasn’t talked to you about a survivorship care plan, it’s a good idea to bring it up at your next appointment. Here are some questions you may want to ask your oncologist:
- Can I get a survivorship care plan in writing that explains all the medical issues I need to consider and tells me which screening tests I need and when I should have them?
- Which doctor should I see for each medical issue?
- If your oncologist recommends that you see a specialist -- a cardiologist for example -- and you’ve never seen one before, you may want to ask for a referral to a specific doctor.
- If there is anything in your survivorship care plan that you don’t understand, ask your doctor or nurse to explain it
It’s also a good idea to talk to your primary care doctor about your survivorship care plan and ask which parts of it she or he will be responsible for.
There’s only one of you and you deserve the best care possible, both during and after cancer treatment. Because the idea of survivorship care plans is relatively new, you may have to advocate for yourself to make sure you that get a written plan.