Life From Stage 0 to Stage 4
I had a feeling 2019 was going to be the year to “restart” my life, one that I had put on hold due to having children (now eight and four years old) and previous breast cancer diagnoses.
In 2016, I was diagnosed with ductal carcinoma in situ (DCIS) just before I turned 36. After the bilateral mastectomy, I had a pretty easy recovery and was told that I was CURED! I believed that fully until in 2017, the DCIS came back so I had surgery to remove remaining tissues in my breast. I was cured and told to live my life not only once, but twice! Although the thought of recurrence lingered, I held tight to the excellent prognosis that “ten years after DCIS diagnosis, 98% to 99% of women will be alive”[1].
As my children continued to grow, my intention to return to work full-time grew with it, while the fear of recurrence diminished. Afterall, I was closely monitored by three doctors after the last surgery and had clean scans and bloodwork throughout 2018. As I did not need other treatments after surgeries, I gradually regained confidence of my body and believed cancer was behind me. I envisioned myself returning to work in 2019, and with a few extra dollars in our pockets we could take a few more vacations, make more trips out west to see our families, and splurge on the stuff I’ve always wanted. I would get more fulfillment balancing work and family life. We have been planning our annual camping and road trip for summer of 2019, as well as a cruise with my family to celebrate my father’s birthday in the fall. In between all of the planning, I was juggling the daily grind as a stay at home mom and the volunteering duties of the kiddos. I had a game plan to tackle life as a working mom again!
All of that changed in late January this year when I received the newest diagnosis, this time, Stage 4, metastatic breast cancer (MBC). My disease was extensive in the liver, and metabolic activities shown in various lymph nodes and bones on the PET scan. In a matter of weeks, all my life goals and plans were thrown out the window and replaced with simply STAYING ALIVE.
Having experienced early-stage breast cancer twice, it was difficult to accept the metastatic diagnosis, because this time, there is no cure. Then it became clear to me that perhaps I (or the doctors who so wanted me to be cured) was wrong all along, as “breast cancer can come back in another part of the body months or years after the original diagnosis and treatment. Nearly 30% of women diagnosed with early-stage breast cancer will develop metastatic disease.”[2] I believe dealing with any stage or type of cancer is difficult, but for metastatic cancer patients, the future is truly unknown. Staying alive becomes the ultimate goal as that buys more time for newer and more promising treatments, and perhaps one day, for a cure. It is also a full-time job. It is my new full-time job.
In a way, my life did “restart” this year, however, I’ve been forced into a new game where “the end” is no longer just a fear, but a reality that I have to learn to live with. My new game began with twelve weeks of chemotherapy, literally hitting a reset button on my body as well as all cancer cells. It also involves ongoing treatments, for me hormonal and targeted therapy as I am ER/PR+ and HER2+, to keep the disease at bay. Ongoing means I continue to take them until I get hit by a truck or when the disease progresses demonstrating that the meds are no longer effective, then we try the next line of treatment. It’s great when medications work but they come with side effects. The chemo ones are hopefully temporary but ongoing medicine side effects are, well, ongoing. Fortunately, there are other meds or alternative therapies that can combat side effects. As any long-term plans are dependent on progression, my new game plan is simply living each day as meaningful as possible, and plan in three-month intervals, as that’s the time I have between scans. It has also forced myself to slow down and think about what is truly important – having a career for self-fulfillment, as I have discovered, is not, but staying alive for my family, is.
I’m very fortunate that “complete metabolic response” was shown in the PET scan done in May, which means the meds are working! However, the disease is not considered cured as in early-stage diagnosis. But I’ll take that! And even though my new schedule is now filled with numerous scans, tests, blood work, and ongoing treatments in needles and pill form with side effects, I am grateful that I am still here, still alive today and hope I will be in this cancer game for a long, long time.
For more stories from women living with MBC, click here.
Vivian Chu is a metastatic breast cancer thriver. She lives in Calgary, Canada with her husband, Sam, son and daughter, and is a Vancouverite at heart. She shares her cancer journey at www.wearefamilui.com
