If you have been through the diagnostic process and a biopsy has revealed cancer, you probably have mixed feelings of shock, disbelief, and fear. You also likely have dozens of questions. Knowing what to ask when diagnosed with breast cancer is important because studies show that educated patients are better able to understand and manage their illness. Your oncologist should take the time to offer answers and support. Questions will arise throughout the process, so there is no set list of what to ask when you’ve been diagnosed with breast cancer. That said, here are ten broad questions to start with.
1. What type of breast cancer do I have?
Cancer can arise in the milk duct (ductal), milk gland (lobular), or other breast tissues and can be “in situ” (in place), or the cells may have invaded other breast tissues or lymph nodes. Approximately 70-80% of all breast cancers are invasive ductal carcinomas. The type of breast cancer is also a reference to the unique features of the tumor cells. Is the cancer estrogen, progesterone, or HER2 receptor positive? If not, and you receive a diagnosis of triple-negative breast cancer or another less common form of breast cancer, ask if gene expression profiling can show which subtype it is and if there is a targeted therapy to combat it.
2. What stage is my cancer?
How large is the cancer? What is the location? Has it spread to lymph nodes or distant areas of the body? These are among the questions and considerations used to determine the stage of cancer, which ranges from 0 to IV and describes the severity of illness. The American Joint Committee on Cancer TNM system is the most commonly used staging system and was updated in 2018. Using set criteria, your doctor will determine the stage of disease, which will be used to guide your treatment.
3. What is the prognosis?
Doctors use stage and tumor type to determine prognosis. Ask how your age, overall health, and your response to treatment may affect your individual prognosis. Five-year survival rates are used as a standard measure, but you should know that this is only an average. Many who survive five years also go on to live many more years. Approximately eight out of ten women diagnosed and treated for breast cancer are alive ten years later, and breast cancer prognosis overall is improving.
4. What are my treatment options?
Targeted breast cancer treatment options and newer treatments are changing the way that many healthcare professionals view long-term prognosis, even in cases of metastatic disease. There are a series of questions that patients should ask about surgery, chemotherapy, endocrine therapy, and other targeted therapies. The American Cancer Society and the American Society of Clinical Oncology (ASCO) each have a list of various questions to ask, including: “How soon do I need to start treatment? Will a delay affect prognosis? What are the side effects, and what if a first line treatment doesn’t work?”
5. Do I need additional tests?
There are various tests that your oncologist will rely on to monitor the treatment response. Depending on your tumor type and what your oncologist has already told you, you may want to inquire about genetic testing. Are you a candidate, and what are the pros and cons of genetic testing? Separately, has gene expression profiling been done to further identify the subtype of cancer that you have? If so, is that allowing for a more personalized treatment approach?
Many patients will continue regular mammograms after treatment. On this front, ask the doctor: “Where is my cancer located, and could a recurrence evade standard mammography?” Some tumors on the chest wall may require closer scrutiny due to the tumor location. In other cases, certain types of cancers can be missed during regular screenings.
6. How will treatment affect my life?
More specifically, you may be wondering: “Will I be able to work? How will treatment affect my daily activities? What support groups are available for both emotional and physical support during this time?”
Fortunately, there are numerous organizations that offer logistical support and ways to keep family in the loop. It’s also important to ask about insurance coverage. There are various online support organizations, such as Breastcancer.org, SurvivingBreastCancer.org, Touch, The Black Breast Cancer Alliance, and Triage Cancer, that cover a range of issues.
7. What lifestyle approaches can boost treatment?
Lifestyle factors can affect cancer risk, and many of these same measures are crucial considerations when battling existing tumor cells. Exercise, diet, and weight should all be assessed. Ask your oncologist for ways that you can boost your body’s ability to fight cancer, and ask about lifestyle factors that could be detrimental.
8. Should I get a second opinion?
Knowing who is part of your cancer care team is essential. What are the credentials and backgrounds of each team member? ASCO offers tips for choosing an oncologist. The American Cancer Society also has advice about choosing an oncologist and a hospital. If you are at a major medical center and your cancer is at a lower stage, you may be comfortable moving ahead. Either way, take the time to review your treatment team, and know that getting a second opinion is encouraged.
9. Are there clinical trials available to me?
Clinical trials can offer investigational treatments not yet available to the public. Ask your oncologist which clinical trials they may have heard about. Keep in mind, though, that your doctor can’t possibly track the thousands of clinical trials constantly underway. Unfortunately, not knowing about a trial is one of the barriers that patients face in identifying potential new treatment options. Another is that records aren’t being sent to the right organizations quickly enough. Ciitizen aims to break down these barriers by offering a free clinical trials matching service that helps patients compile and share their medical records and explore treatment options.
10. How do I get a copy of my medical records?
Many hospitals have patient portals that don’t sync up with other databases. There may also be delays in retrieving records, which can affect treatment or the ability to enter a clinical trial. Other questions that patients grapple with include: “Which health records do I need? How should I best organize them?”
Breastcancer.org consistently advises patients to compile all their records and lists Ciitizen as a free tool that simplifies the process for patients. It ensures that medical records are compiled and sent to other organizations or physicians seamlessly and without delay.
Ciitizen is a free service that helps patients get more out of their health records. Our platform enables patients to find better treatment options and gives them the opportunity to advance the research for cures.
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