Stage 4 Breast Cancer: Stories of Survivorship

“I’m sorry, but your breast cancer has spread to your liver.” These may be the words my oncologist used when he told me that I was now metastatic, but to be honest, I can’t recall them clearly. What I can remember is the emotions: shock, disbelief, and the feeling of doom.

From what I knew at the time, metastatic cancer was a death sentence.

Metastasis, the thing that all women with early stage cancer fear, happened to me only 4 months after my treatment ended. I thought, “How could this be?” I had been a stage 2A. I had no nodes. There was little to indicate that mets (metastasis) was going to be my fate.

I soon realized that “Why me?” is an unanswerable question. It doesn’t matter. It was me, and now my job was to live as long and as normally as possible … or so I thought.

Metastatic cancer strips life away from you bit by bit. First, it takes your health. Then it takes your time, your job, and finally your future. Sometimes, horribly, it even takes your friends or family. Those who can’t deal with a diagnosis of metastatic breast cancer drop away.

Magically, you rebuild in this new world. You find kindness in people you never knew cared. Their friendship unfurls in front of you like a flag. They send cards, bring food, and give hugs. They’ll do chores, take you to treatments, and even laugh at your corny jokes.

You learn that you’re more important to some people than you ever imagined and that these are the only people who count. They bolster you, and your spirits rise and fear dissipates.

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 lost hair but grew spiritually. I felt happy that I was able to have surgery to remove the cancerous half of my liver, and sad when cancer grew back in what was left. Battle metaphors applied: Like a warrior, I got out my gamma knife and radiated it.

I slept more than I knew a human could, but the times I was awake were simple and joyful. Hearing the laughter of my sons or the buzzing of a hummingbird’s wings — those things kept me grounded and in the moment.

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.

The present is where you must live when you have metastatic cancer. The future is only a dream, and the past is vapors. Today is all there is — not only for you but for everybody. This is the secret of life.

I was diagnosed with metastatic breast cancer in 2009 at the age of 43. Although the majority of people in the United States currently living with metastatic breast cancer were previously treated for early stage breast cancer, that wasn’t the case for me. I was metastatic from my first diagnosis.

Getting my head around this diagnosis was challenging. Here are six things I wish I had known back then. I hope they will help other newly diagnosed metastatic breast cancer 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 24 to 36 months. My 36 months came and went on August 28, 2016.

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’s been smooth sailing up to this point. There have been two separate rounds of radiation that caused nerve damage, three separate surgeries, two hospital stays, five different biopsies, and countless tests and scans. I’m on my fourth treatment plan and last non-chemo option.

Knowing that your time is going to be significantly shorter than you had imagined puts things into quite a different perspective. It became very important to me to try to help other people who may find themselves in the same position I did. I had no idea before my own diagnosis what metastatic breast cancer was — or that it was terminal. I went to work to establish a social media presence so that I could possibly inform and educate from my experiences. I began blogging, sharing on various platforms, and connecting with other women that had all forms of breast cancer.

I also learned two very eye-opening things: Metastatic breast cancer research is woefully underfunded, and breast cancer is anything but the “pretty pink club” that it’s portrayed to be. I wanted to help change that, to leave a legacy that my now 17-year-old son can be proud of.

This past August, two of my closest friends invited me to join them in forming a first-of-its-kind digital magazine/community for all those affected by breast cancer: The Underbelly. We’re committed to shining a light on the darker, but very important, aspects of breast cancer that normally go unspoken or are swept under the rug. When the common narrative of how to “do” breast cancer doesn’t resonate, we want to have a safe place for those who want to show up and be their honest selves without judgment. That’s just 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, this would have been light-years away from what my answer would have been. I have my days when I get angry because of what I have to do to make sure I keep going. I’d be lying if I said it was all hearts and glitter. But I do feel blessed that I get to work with my friends on a daily basis and I know — I’m positive — that I will leave a legacy that my son will be proud of and will share with his children should my time come before I get to meet them.