To say that the first year of a stage 4 breast cancer diagnosis is like a roller coaster ride is an understatement. As a new metastatic breast cancer patient we hope you will find both validation and hope. Also, the non-patient family, friend or caregiver might also gain a sense of what it means to be someone just beginning to live with stage 4 breast cancer.
There is little in life that prepares you for hearing, “You have cancer and it is metastatic”. “Your breast cancer has come back – in your bones”. “Your cancer has spread to your liver and lungs.” “Your cancer has spread beyond the breast and there is no cure.” It is very probable that most women and men diagnosed with stage 4 breast cancer do not know anyone else that is metastatic. If you are reading this, you have found METAvivor and you will learn you are not alone.
There is no easy way to tell those you love that you have metastatic breast cancer. It is difficult to tell and difficult to watch those you love listen to what you and your doctor have to say. There is no one way to do this. The range of emotions is limited only by the number of people who must hear this diagnosis. Reaching out beyond family and friends and connecting with other MBC patients may fill a void that, at times, only they can fill.
The impact of getting stage 4 cancer news does not end with the announcement. It can envelop you twenty-four/seven for weeks or months. It will take time to work through the grieving process. Coping strategies span a broad range: gathering family and friends around you, learning, traveling, organizing, reading, the arts, diving into a hobby, seeking counseling, finding a support group. Allow yourself space and time to adapt to the new rhythm of living with metastatic breast cancer.
Trust and confidence in your medical team are critical to all aspects of your well-being. Some patients want to know everything, some do not. You should let your doctors know who you are. Tests and doctor visits can be stressful in their own right. You may find it helpful to take someone with you to take notes and help you listen. Good news or not, plan for activities that will bring relief from the tensions and stress of these visits and tests.
Medications can be the proverbial “double edged sword”. We all hope for medications that control the cancer with few or no side effects. Unfortunately, this is not always possible. Sooner or later each drug stops working or becomes intolerable, and we have to move to another drug. When that happens it will be up to you and your medical team to decide on the next treatment. Fortunately there are a variety of options for each patient. You will be the teacher to your family and friends. Conversations with other metastatic patients, in person and online, are the times and places where you will be able to nod your head in agreement, ask questions that are not answered in the pharmaceutical brochures and, again, know that you are not alone as you work your way through your treatments.
Slowly, ever so slowly, you will acquire a new normal. The proverbial “one step at a time” really is true. At times, it may be hard to remember that as a mets patient you are still fundamentally you, but you are! Only now, it is you living with metastatic breast cancer. Some patients work full-time, some are retired, some are still raising children. There may be a new urgency in many things you do or you may have a new laissez faire attitude. But once again, if you, as a patient, are reading this you are living with metastatic breast cancer. You are so much more than stage 4.