More people are living longer after being diagnosed with breast cancer and need personalized survivorship care plans to meet their differing needs, according to a Dutch study.
Researchers presented the study, “Towards tailored follow-up care for breast cancer survivors: cluster analyses based on symptom burden,” at the European Society for Medical Oncology (ESMO) Breast Cancer 2021 Virtual Congress, which ran May 5-8, 2021.
What are survivorship care plans?
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 3.8 million breast cancer survivors in the United States, and the number is expected to increase substantially.
Still, 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.
Survivorship care plans are written documents made up of two parts.
The first part is a treatment summary, a record of all the breast cancer treatments you’ve received.
The second part is basically a roadmap of what you can expect in the years after treatment, including any late or long-term side effects you might have, and a schedule of how you’ll be monitored for these side effects and other health conditions. This part of the survivorship care plan usually includes:
- the tests you’ll have
- which doctors will order the tests
- a schedule of when the tests will be done
- healthy living recommendations for your unique situation
- resources, if you need more information
Studies suggest that the percentage of cancer survivors who have survivorship care plans is much lower than national cancer organizations would like.
To make it easier for you and your doctors to develop a survivorship care plan, professional organizations such as the American Society of Clinical Oncology have developed templates you can use as a starting point.
About the study
Survivorship care recommendations for people who’ve been treated for breast cancer vary from country to country.
In this study, the researchers wanted to see if the recommended follow-up care for people treated for breast cancer in the Netherlands was meeting survivors’ needs.
Dutch breast cancer survivors have a yearly visit with their doctor for 5 years after their breast cancer treatment ends. If a woman is younger, she has these yearly visits for 10 years after her treatment ends.
The study included 404 Dutch women who had been treated for stage I to stage III breast cancer 1 to 5 years earlier. All the women had breast cancer surgery; the researchers didn’t report how many of the women had treatments after surgery, such as radiation, chemotherapy, or hormonal therapy. All these treatments after surgery could affect the type and severity of long-term side effects the women might have.
The researchers asked the women to fill out a survey about specific long-term side effects they were having, as well as how severe the side effects were.
The survey asked about:
- shortness of breath
- trouble sleeping
- lack of appetite
- cognitive issues (trouble thinking or remembering)
- emotional issues
Based on the women’s answers, the researchers classified them as having low, intermediate, or high symptom burden:
- 28.7% had low symptom burden
- 55.4% had medium symptom burden
- 14.6% had high symptom burden
The researchers also had a representative sample of women in the general population of the Netherlands fill out the same survey.
Women in the low-burden group were less affected by the side effects than women in the general population.
Women in the intermediate-burden group were affected by the side effects about the same as women in the general population, though the breast cancer survivors’ scores for fatigue, trouble sleeping, and cognitive issues were slightly worse.
Women in the high-burden group were much more affected by all the side effects than the general population.
“This was the smallest group, only 15% of our population, but nonetheless, one in six women in our study had worse scores than the general population for all symptoms — and the differences, ranging between 15 and 20 percentage points, were large enough to be considered not just statistically significant, but clinically relevant as well,” said lead author Kelly de Ligt, Ph.D., of the Netherlands Cancer Institute, in a statement.
She added that the results confirm the need for personalized approaches to follow-up care for people treated for cancer.
The researchers also found that women with other health issues, such as heart disease and diabetes, were more likely to be in the high symptom burden group.
What this means for you
After your main breast cancer treatment is done, it’s important to focus on what’s now most important: your good health. You deserve the best ongoing care so you can live your best life. If you’ve finished breast cancer treatment and your oncologist hasn’t talked to you about a survivorship care plan tailored to your unique needs, it’s a good idea to bring it up at your next appointment.
Here are some questions you may want to ask your oncologist:
- Ask for a survivorship care plan in writing that explains all the medical issues you need to consider and lists which screening tests you need and when you should have them.
- Ask for which doctor you should 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 get a written plan.
For more information, listen to the Breastcancer.org Podcast episode on survivorship care plans, with expert guest Dori Klemanski, DNP, CNP, clinical director of survivorship at the Ohio State University Comprehensive Cancer Center-James Cancer Hospital and Solove Research Institute.
Written by: Jamie DePolo, senior editor
Reviewed by: Brian Wojciechowski, M.D., medical adviser
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