Because of better diagnostic tests and advances in cancer treatments, more people are living longer than ever after being diagnosed. This is true for all types of cancer, including breast cancer. Experts estimate that there are about 2.8 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.
Now another small study suggests specifically that Latina women who’ve been diagnosed with breast cancer are likely to experience many gaps in care after breast cancer treatment is completed.
The study was published online on Nov. 2, 2016 in Public Health Nursing. Read the abstract of “Perceptions of Survivorship Care among Latina Women with Breast Cancer in Los Angeles County.”
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 that they may be at higher risk for, experts have developed the idea of survivorship care planning.
In this small study, 74 Latina women ages 30 to 75 who had been treated for breast cancer took part in focus groups that asked questions about survivorship care. About half the women were considered to have low income, were uninsured, or were publicly insured. The focus groups were conducted in both English and Spanish.
The researchers found many gaps in care and needs that were not being met. The women reported problems with:
- continuity of care
- access to information
- symptom management
Many of the women were unsure who was in charge of their healthcare in the future, as well as the schedule for follow-up exams, which self-care activities were recommended, and what to expect regarding their physical and psychological well-being.
"Among the women in our focus groups, survivorship care plans were scarce," said Carolyn Mendez-Luck, assistant professor of public health at Oregon State University and one of the study’s authors. "The vast majority of participants reported never having heard of them, or associated them with a completely different meaning -- making a plan for how their families could carry on after they were gone."
She also explained that Latina women are more likely to be diagnosed with later-stage breast cancer than non-Hispanic whites and face linguistic and cultural barriers to diagnosis and treatment, including modesty, spiritual beliefs that cancer is God's punishment, de-prioritizing their own healthcare in favor of their roles as mother and wife, and being passive when interacting with healthcare providers out of respect for their authority.
In addition, there are often financial hurdles -- more than 25% of Latina women live in poverty and lack health insurance.
"Understanding the cultural context in which women receive care is important," Mendez-Luck said.
The research also showed that depending on the person, the word "survivor" could have negative or positive connotations.
"Negative perceptions included feelings that being identified as a cancer survivor was depressing, victimizing, and stigmatizing," Mendez-Luck said. "Also, that thinking about the cancer could potentially contribute to an increased likelihood of a recurrence, either by 'tempting fate' or from the stress brought on by negative thinking."
Positive views, she said, included feeling special, strong, and blessed by God. Many survivors felt they had a special purpose for living, often including a mission to serve others.
"A survivorship care plan is meant to be this living document for you and your care providers, a document a patient can follow through this entire process of what's going on with the cancer and what she can do to stay healthy and reduce the chances that the cancer will return," Mendez-Luck said. "It makes the patient truly a partner in her own care with health providers. But that's not happening, clearly, at least not for these women. There's an enormous opportunity there for improvement."
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.