1.When you are diagnosed with MBC you are best served by a doctor who focuses on the treatment of MBC and treats a large number of MBC patients. You can find this out by asking questions when you call to make an appointment.
2. Be sure that there is mutual respect and trust between you and the doctor you choose. Does the doctor explain the results of your tests and welcome your questions and answer them in language you understand? Does the doctor care about you as a person and take time to understand your goals and values? If good communication is lacking, consider finding a different doctor.
3. When a prior early-stage diagnosis recurs as MBC, you should not assume you have the same kind of breast cancer as your first experience with the disease. MBC is complex and can mutate or change in its molecular makeup upon diagnosis or progression. A biopsy is very important to knowing what you have.
4. Biopsy results are to be believed, not discounted. If a doctor is doubtful about a biopsy, discuss the doctor’s concerns. If you are not satisfied with the answer, consider getting another opinion. If a doctor chooses to ignore the results of a biopsy, press why.
5. The patients who seek out knowledge about their particular MBC are generally more satisfied with their treatment experience and have better outcomes. Knowledge is power! Begin by finding out where your cancer cells grew in your breast—the ducts or the lobules. This will inform you if you have ductal or lobular breast cancer—an important distinction in imaging and treatment. Second, be sure you know your subtype—what is causing your cancer to grow—Hormone Positive MBC, Her2+ MBC, or Triple Negative are the main categories. Your subtype will inform treatment choices.
6. Genomic sequencing tests are part of what is called Precision Medicine—finding the right treatment for the right patient at the right time. The FDA now suggests that every newly diagnosed patient have their tumor sequenced. Medicare reviewed the FDA’s recommendation and offers coverage. The benefits of such test are mutations in the tumor are identified. Particular mutations may allow a patient to qualify for an approved targeted therapy or may suggest that the patient consider a particular clinical trial.
7. You have right to understand the nature of your disease and the reasons why the doctor is recommending particular treatments. If your doctor is not patient in explaining this or uses language you do not understand, then it may be time to find a new doctor.
8. Different types of therapy can be helpful to a patient with MBC. Radiation can take care of painful bone lesions. A newer form of therapy, Stereotactic Radiation Therapy can be used to remove a small number of lesions called oligometastasis. If you are newly diagnosed and are told you have a small volume of disease (i.e, very few lesions) ask if you are oligometastatic and if this gives you additional treatment options. This type of therapy also should be explored in oligoprogression—when there is a progression of just a few lesions. Your doctor should be keeping current with the latest oligometastasis research–if not, seek a second opinion with someone who is.
9. Immunotherapy is also being studied as a new class of treatment in MBC. While most research has been done in Triple Negative Breast Cancer, immunotherapy is also being considered in other subtypes of MBC. Do your research to see what clinical trials exist and talk to your doctor.
10. When receiving a treatment for MBC, you should ask when the doctor when and how the doctor will find out if it is working. A non-targeted treatment that is not working will attack all your cells and weaken you, making it difficult to handle the next line of treatment.
11. If your doctor offers you two possible treatments, ask questions until you clearly understand the benefits and toxicities of each recommended therapies before deciding to use a new treatment. Consider also if a particular treatment fits in with what is important to you in life. Would some toxicities strongly impact your quality of life? If you are not able to make a decision, consider a second opinion.
12. All approved treatments are the product of a clinical trial. When you progress, you expect that another treatment will be available for you to try. But, without patient participation in trials, we cannot expect new treatments will be there for patients. Since some doctors do not bring up clinical trials, patients should be proactive on their own to find trials for which they might qualify. Use the search engine, Metastatic Breast Cancer Trial Search which is on the MBCN website. or by joining the patient experience registry, MBC Connect.
13. Become a partner is research by joining MBC Connect at mbcconnect.org, an interactive, web and mobile friendly patient experience registry. There you can share your disease history, treatment experiences, and quality of life information. Beginning at the end of October, every person who is a registry member will receive a list of clinical trials for which they might qualify and based on their treatment history. This service greatly simplifies the burden of searching for a clinical trial. MBC Connect is available in English and Spanish.