A Guide for the Newly Diagnosed
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 IV breast cancer do not know anyone else who is metastatic. But you are not alone.
TELLING FAMILY AND FRIENDS
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 others coping with metastatic breast cancer may fill a void that, at times, only they can fill.
The impact of getting stage IV cancer news does not end with the announcement. It can envelop you 24/7 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.
The impact of getting stage IV cancer news does not end with the announcement. It can envelop you 24/7 for weeks or months.
THE DOCS, THE TESTS
Trust and confidence in your medical team are critical to all aspects of your well-being. Some people want to know everything; some do not. You should let your doctors know which 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 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. At some point, your drug may stop working or become intolerable, and you 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 person with metastatic breast cancer. You will be the teacher to your family and friends. Conversations with others facing metastatic cancer, 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 brochures, and, again, know that you are not alone as you work your way through your treatments.
DID YOU KNOW?
73,000 to 86,000 Americans are diagnosed with metastatic breast cancer each year.
LIVING WITH STAGE IV BREAST CANCER
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 people 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 know that you are so much more than stage IV.
A diagnosis of metastatic breast cancer rocks the world of anyone who hears those words from their doctor. Access to support can make a significant difference in your ability to cope, find comfort, and keep going. Meeting others who share your illness can be an enormous source of support and validation of your own experience. Metastatic breast cancer support groups can be difficult to find, but they do exist, and social media has also expanded the options for online support.
Metastatic breast cancer support organization METAvivor has a Peer To Peer Support Group program for people with metastatic breast cancer. To find a list of support groups offered through this program, you can visit the METAvivor interactive map at METAvivor.org.
Excerpted with permission from METAvivor, metavivor.org
This article was published in Coping® with Cancer magazine, July/August 2018.