We’re all at a loss for words when a good friend or loved one is diagnosed with an illness, especially one as elusive as cancer. Of course, cancer comes in many forms and guises. But what makes it particularly hard to understand is the fact that it is a deformation of our own DNA which turns our own cells against us. As if a terrorist is discovered – not in your hometown, but in your body – transforming your own cells into a growing frenzy.
For those of us living with metastatic breast cancer, the words “you’ve got cancer” were followed by “we’re sorry but you cannot be cured.” When my oncologist told me this over two years ago, I had no idea I would still be here today. I was 42 years old, vegetarian, worked out, consumed very little alcohol, and have never smoked. From one day to the next, I had become a cancer patient with maybe a few weeks to live.
When I asked the oncologist how much time I had, he didn’t dare answer me but his eyes and body language said enough. I figured I had some weeks left, but not many.
At my first diagnosis, my cancer had already permeated my liver so badly that my liver was failing. I had no idea that I was sick. I felt betrayed by my own body. He told me my liver was full of cancer; it was one-and-a-half times as big as it should be. My bilirubin was at 50. My sister offered part of her liver for a transplant, but that was not an option. Hormone treatment could probably help, if only “we had enough time to try it.” Later I learned you need about six to eight weeks for it to “catch on.” I had an ER+, half PR+ and HER2- breast cancer (Luminal B subtype).
I have since noticed that doctors always talk about “we” when they really mean “you.” After all, you’re the one who is facing death. But even doctors and nurses find death a difficult thing to talk about. I have no fear of death. But I wasn’t planning on dying so soon, either. In the media, the words “metastatic breast cancer” seem synonymous with death. I am living proof that there is much more to living with metastatic breast cancer.
After my initial diagnosis in July of 2012, I was given a combination of chemo treatments (AC) which slowed the cancer but also caused neutropenia and infections. I was hospitalized at the end of September 2012 with strep throat and mouth sores. Within a week, I had gained 20 pounds of IV fluid which my body couldn’t process. I was all swollen and had mucositis.
My oncologist told me then that I had just a few weeks to live (which meant I would not live to see Christmas that year), that the cancer was coming back fast and that only one treatment option was left (which turned out not to be possible if one had liver issues!). That was a breaking point for me. I couldn’t talk or eat because of my painful mouth sores, and I couldn’t walk, either. I decided to leave the hospital and was allowed to go home in October 2012. I asked another hospital for a second opinion.
Days after being discharged, I was referred to the national cancer hospital in Amsterdam where I was given chemo using intervention radiology. The radiologist inserted a thin plastic catheter into my artery in my leg and pushed it all the way into the liver. Then he injected the liver with Mitomycine-C (primarily used to treat bladder cancer). I was given this treatment twice and my liver recovered quickly after that. Within two months most of the tumors in my liver were replaced by scar tissue and my bilirubin levels dropped to normal.
I started to recover, could walk again and was given Xeloda (Capecitabine). After a trip to see friends in the US in early 2013, I started to feel better. My hair grew back, I gained strength, and my markers dropped.
In May 2014 my new oncologist gave me hormone treatment, and the results were great. The cancer in my right breast (which had been nearly three inches in size) had gone, the lymph nodes looked clean and the liver had stabilized. I went back to work and have not had any problems or recurrence since. The cancer is still there, but inactive, and all blood tests show the same stable results.
I have been back at work since May 2013. I never thought I would get a job, but I did. Now I’m happy and living a full life without pain. I can even run again and I love to walk outside in the woods with my dog.
I tell you all this to give you some hope and strength to persevere. Doctors don’t always know what is possible, so ask for a second opinion, if you can. And the power of perseverance is very strong. Having said that, if you feel bad, or have pain everywhere, just having hope will not make you better, but you may feel stronger.
What is perhaps so amazing is not that many of us will die of this disease, but that there are more and more women and some men living with metastatic breast cancer now than ever before, and living longer. In the US alone, there are over 150.000 women with metastatic breast cancer. Still, 40,000 patients die each year – most of them women.
In April of this year, I had the good fortune to attend a Living Beyond Breast Cancer conference in Philadelphia, where more than 150 women and men with metastatic breast cancer joined together. What struck me most was the spirit of this wonderful group of people, united because we all once heard those words “you cannot be cured.”
Dr. Julie Gralow MD, a professor at the University of the Washington School of Medicine, gave the keynote speech (link to video) and told us about the many new studies that are underway with new treatments for MBC patients. She expects that more patients will live longer, and some may even be cured. Of the nearly 1.5 million newly diagnosed patients, only about 50,000 participate each year in clinical trials.
At the conference, I met two wonderful women from Halifax who have created a support network for MBC in Nova Scotia. Everywhere in the world there are people helping each other. So even if you or someone you love has heard those fatalistic words, there is always hope. I just hope that more patients can live with MBC the way I have. The right treatment has allowed me to enjoy every day of my life and I am now part of a wonderful community of survivors.
I wrote a little poem for survivors:
A thing called hope
There is this thing
Tucked away in a far corner
Of our being
A casket locked down tight
Too tight to budge
Light and airy, it floats on the current
Like a butterfly or fairy
Not quite sure if it is real
A fleeting solace
Or solid rock of faith