Women with stage 4 breast cancer share their stories.
Editor’s note: This story was first published on July 29, 2014 and has been updated over time. Its current publication date reflects a new medical review.
“Your breast cancer has spread to your body. I can’t remember the words my oncologist used when he told me that I was now dead. I can’t remember the feelings of shock, disbelief, and the feeling of doom.”
I knew that cancer that had spread to other parts of the body was a death sentence.
“After my treatment ended, metastasis happened to me, which is a fear for women with early stage cancer. I wondered, how could this be? I was a stage 2A. I didn’t have any nodes. There was no indication that mets was going to be my fate.”
“I realized that the question is not an answer. It doesn’t matter. I thought that my job was to live as long as possible.”
“You are no longer alive because of metastatic cancer. It takes your health first. It takes time, your job, and finally your future. It can take your friends or family. Those who can’t deal with a diagnosis of breast cancer are left out.”
“You can rebuild in this new world. You find kindness in people you don’t know. Their friendship is like a flag. They bring food and give hugs. They will do chores, take you to treatments, and even laugh at your jokes.”
You learn that you are more important to some people than you thought and that these are the only people who count. They help you, and your spirits rise.
The years since I was diagnosed haven’t always been easy, but you’ll note that I said years. Nobody gave up on me, including the most important person: my doctor. No end date was stamped on me, and progress was always expected. Some of the chemos I underwent worked for a time. Some didn’t, but we never quit.
I grew my hair back. I was happy that I was able to have surgery to remove the cancer from my left side, but sad that it came back. I got out my knife and fought.
I slept more than I knew I could, but the times I was awake were simple and joyful. Hearing the laughter of my sons or the buzzing of a hummingbird kept me grounded.
Amazingly, I am now cancer-free. Perjeta, a drug that was not on the market when I was diagnosed, has done what seven chemos, three surgeries, an ablation, and radiation couldn’t. It gave me my future back. I tentatively step ahead, but I won’t forget the lessons cancer taught me.
When you have cancer, you must live in the present. The future is a dream and the past is not. Today is all there for everyone. This is the secret of living.
“I was diagnosed with breast cancer at the age of 43. Most people with breast cancer in the United States have been previously treated for early stage breast cancer, but I didn’t. I was diagnosed with cancer after my first diagnosis.”
It was difficult to get my head around the diagnosis. I wish I had known more about these things. I hope they will help other patients.
- Understand that not all metastatic breast cancer is the same. My mom died from metastatic breast cancer in 1983 when I was 17. Mom lived for 3 years with the disease, and those were 3 very difficult years. I immediately assumed that my experience would be identical to hers, but Mom had aggressive, widespread disease. I do not. I have a minimal amount of bone mets, which have been largely stable for the past 5 years. And, of course, treatments have changed over the past 30 years. I have never had chemo and won’t have it until all of the less toxic options have failed. Some people with a low volume of bone-only disease can do well for a long time. I’m fortunate to be one of them.
- Remember that your mileage may vary. You may assume that a metastatic breast cancer diagnosis means massive changes, but that’s not necessarily the case. I see my oncologist every other month, but I do everything I used to do prior to having stage 4 breast cancer. I go to work every day. I travel. I volunteer. I hang out with my family. Not everyone with metastatic breast cancer can say that, but don’t write yourself off!
- The issue is the tissue. Your pathology report holds the key to understanding your treatment options. While other factors (age, prior treatment, etc.) must be considered, your ER/PR and HER2 statuses are your guideposts. If you were previously treated for breast cancer, insist on a new biopsy if feasible. Cancers can and do change!
- Get the help you need. If you had a headache, you would almost certainly take an aspirin. So, if the stress and your emotions are overwhelming, speak up. Ask your doctor for help. There are effective anti-anxiety medications, and most cancer centers have counselors or can refer you to one in your community.
- Find support — in person or online. Here is a listing of in-person support groups across the United States and Canada. There are many online groups (Breastcancer.org and Inspire are two examples) that have virtual meetups or discussion groups for people living with metastatic breast cancer. One association (Living Beyond Breast Cancer) has an annual conference specifically for people living with metastatic breast cancer.
- Take it 1 day at a time. You can worry about what did happen or what might happen, or you can enjoy the present time for the gift it is. Stay focused!
The memories I have of the first meeting with my oncologist are hazy, but I clearly remember her saying that she would do all she could to try to keep the cancer at bay. But she also said that there wasn’t a cure for metastatic breast cancer. While sitting there hearing her voice without really comprehending much of what she was saying, the voice in my head was saying, “How did we get here? It was just a backache.”
It’s hard to believe that was a little more than 3 years ago. According to the statistics — if you go by statistics — I should be dead. A metastatic breast cancer diagnosis has a median life span of
A note on median survival
The story was written in the year of 2017: The writer mentioned a median life span when the story was first published.
Because of treatment updates, median survival for people with metastatic breast cancer has improved. According to research from 2022, median survival for people receiving certain treatments may be as long as 57.1 months.
I was diagnosed with stage 4 metastatic breast cancer de novo in 2013. The cancer had spread outside my right breast, through my bloodstream, and set up shop in my spine and ribs. I had no idea until my back began to hurt earlier that month. The mammogram I had 9 months earlier had been clear. So, to say this diagnosis was shocking is an understatement.
I wish I could say it has been smooth sailing. There have been two separate rounds of radiation that caused nerve damage, and three separate surgeries. I have four treatment plans and a non-Chemo option.
“It’s a different perspective when you know that your time is going to be shorter than you had thought. I wanted to help other people who were in the same situation I was. I had no idea what breast cancer was until I was diagnosed. I went to work to establish a social media presence so that I could inform and educate from my experiences. I started sharing my stories on various platforms and connecting with other women who had breast cancer.”
I learned that breast cancer is not the same as the “pretty pink club” that it is portrayed to be. I wanted to leave a legacy that my son can be proud of.
“Two of my dearest friends invited me to join them in forming a first-of-its-kind digital magazine for those affected by breast cancer: The Underbelly. We are committed to shining a light on the darker aspects of breast cancer that are usually hidden or not talked about. We want to have a place for people who want to be themselves without being judged, when the common narrative of how to do breast cancer doesn’t sell. That is what we do.”
My initiatives to help raise more money for meaningful metastatic research have led me to become an outreach coordinator for The Cancer Couch Foundation. This newly formed organization is run by volunteers and privately funded. All donations go directly to metastatic breast cancer research, and 100% of all funds are matched by the institutions that are funded by this amazing foundation. This means the money is doubled. There is no other MBC organization like it, and I am very proud to support all their efforts whenever I can.
If someone had asked me 5 years ago what I would be doing and what my life would be like, I would have said nothing. I have days when I get angry because I have to do things to keep going. I would be lying if I said it was all hearts and glitter. I feel blessed that I get to work with my friends and that I will leave a legacy that my son will be proud of and that I will share with his children.