Living with breast cancer means working closely with doctors, nurses, and other health care professionals. These medical experts are responsible for your diagnosis and future care.
But you also play a vital role in your breast cancer journey and can be your own best advocate. This is why it's essential to understand your condition and your rights as a patient.
In fact, asking for ESR1 mutation testing is important for anyone with estrogen receptor-positive (ER-positive), human epidermal growth factor 2-negative (HER2-negative) metastatic breast cancer.
Find out more about this testing, why it's important, and how to speak up at your doctor's office.
The Importance of Health Literacy in Cancer Care
Health literacy is the ability to find, understand, and use health information and services to make informed health decisions. When you have a serious medical condition such as breast cancer, health literacy becomes even more crucial.
Here's how health literacy can help in your diagnosis and treatment journey.
Understand Your Condition
As you gather information and ask questions, you gain a deeper understanding of your medical condition. This is especially important when you have ER-positive, HER2-negative metastatic breast cancer with an estrogen receptor 1 (ESR1) mutation, since this condition can be more serious than other types of breast cancer.
Breast cancer that is estrogen receptor-positive and has an ESR1 mutation means the hormone estrogen helps the cancer cells grow faster. And this can worsen how your breast cancer responds to medicine, making it more resistant to treatment.
Preparing for doctor's appointments
The first step in taking control of your cancer will be in the doctor's office.
Gather information
At the doctor's office, be prepared to get as much information as you can about breast cancer in general, and your specific diagnosis.
Get extra help and second opinions
Lean on the expertise of others, from those who are going through their own cancer journey to other medical professionals.
Understanding Your Rights as a Patient
You have the right to certain services and protections from your doctors and other health care providers. The hospital where you get treatment may outline them in a patients' bill of rights. Some of these rights apply to specific states.
Asking the right follow-up questions
Once you've completed treatment for breast cancer, the next step is follow-up care. This involves doctor's visits, screenings, tests, and managing your physical and mental health concerns.
If you have ER-positive metastatic breast cancer with an ESR1 mutation, follow-up care is critical. People with this form of cancer tend to have their cancer return or worsen sooner than people with other forms.
Doctors use established medical guidelines to tailor your follow-up care plan to your specific type and stage of cancer. Here are some questions you can ask about your survivorship care plan:
Questions to ask about the future
- What is the chance that my cancer will return, and how can I lower this chance?
- What are the long-term side effects of my treatment, and how can I manage them?
- What follow-up exams, tests, and screenings do I need, and how often?
- What symptoms should I be looking for, and who should I contact if they appear?
- Who will monitor my long-term health, and are there other specialists I might need to see?
- How long will I need to continue with follow-up appointments and tests?
Questions to ask about care and support
- What is my full follow-up care plan, and can I get a written summary?
- What kind of care should I expect after my treatment ends?
- What support services are available to me, such as support groups, nutritionists, or mental health counselors?
- How can I be as healthy as possible during survivorship?
- Which doctor should I see for my follow-up care?
Questions to ask about managing your health
- How can I manage any ongoing physical changes or side effects from treatment?
- What healthy lifestyle behaviors (like diet and exercise) do you suggest for me?
- Do I need to take any special medications or follow a special diet?
Show Sources
Photo Credit: Moment/Getty images
SOURCES:
MedlinePlus: "Health Literacy."
Asia-Pacific Journal of Clinical Oncology: "Importance of health literacy in oncology."
Fox Chase Cancer Center: "The Importance of Health Literacy in Cancer Care."
PLOS One: "The role of health literacy in cancer care: A mixed studies systematic review."
Medicine: "Health literacy among cancer survivors: Results from the 2016 behavioral risk factor surveillance system survey."
American Cancer Society: "Informed Consent," "Understanding Your Options for Cancer Treatment," "Follow-up Care After Cancer Treatment."
Dana-Farber Cancer Institute: "Patient Rights and Responsibilities."
Stanford Medicine: "Protecting the rights of cancer patients."
Alliance Cancer Specialists: "Patient Bill of Rights."
Mayo Clinic: "Cancer treatment," "Cancer."
Hartford HealthCare Charlotte Hungerford Hospital: "10 Questions to Ask When Your Cancer Treatment Ends."
Henry Ford Health: "11 Questions To Ask When Cancer Treatment Ends."
College of American Pathologists: "ESR1 Mutations in Hormone Receptor Positive Breast Cancer."
