Cancer, Statistics, and Coping with Uncertainty by Lisa Murphree
I used to love statistics. I loved how I could use statistics to understand my world and guide my decision-making. For example, knowing that seat belts reduce the risk of fatal injury to front seat passengers by 45%[i] is great motivation to wear one. Being aware that running for one hour could add seven hours to your life[ii] makes you want to put your running shoes on. Thinking that you are doing the right thing is comforting, and it is satisfying when statistics confirm your decisions.
From my late-twenties and into my thirties, I thought that if I did all the right things – exercise, eat right, maintain a healthy weight, manage my stress, wear sunscreen, do not smoke, and try not to do anything stupid – I would be ok. Through lifestyle management I tried to minimize my risk for developing an illness like cancer, heart disease, or diabetes. I ran half marathons, took up yoga, switched to a mostly plant-based diet, and had regular check-ups with my doctor. I felt confident that the good health decisions I made now would help to stave-off the development of a serious illness like cancer. In my mind, if I were going to get cancer, it would be much later in my life. Getting a breast cancer diagnosis in my thirties never entered my mind…
I received the diagnosis by phone at about 5:40pm on May 9, 2020. It was the Saturday before my very first Mother’s Day as a new mom, and our baby girl was just less than two months old at the time. The news that the lump, which I had discovered in my third trimester, was invasive ductal carcinoma took a while to sink in. I had been so convinced that this lump would turn out to be a benign fibroadenoma cluster, just like the one I have in my other breast. So convinced, in fact, that I had forgotten to make the biopsy appointment after giving birth. My nurse practitioner, to whom I owe so much, had to remind me to make a biopsy appointment during a post-natal tele-health appointment.
What were the chances of something like this happening to someone like me at this point in my life? The National Cancer Institute (NCI) reports a risk of 0.49% for developing breast cancer for women in their thirties in the US[iii]. Half a percent? Really? My risk was not even one whole percent? And what about all the exercise, healthy food, and stress management? In the world of statistics, I guess I am what you would call “an outlier”.
The nine days between receiving my diagnosis and knowing the prognosis was the hardest week of my life. There was so much uncertainty. I needed to know what stage and type my cancer was, then I could find the right medical journal articles to read and discover the statistics that I could cling to. I wanted to know the survival rate for women my age with my type of cancer. Did I dare to envision living long enough to watch my daughter go to college or get married? It is like being snuggled comfortably in a warm quilt of assured longevity one moment, and the next moment feeling cold, naked, and vulnerable in the darkness of an uncertain future. I hoped that my doctors and the subsequent journal papers I read would give me the information I craved.
And here is the information, in all its glory, which I keep in a marked page in my journal to refer to regularly: With my type of breast cancer (HER2+, ER+, PR+, tumor size of 2cm and negative nodes) and with the chemotherapy treatment I am receiving (six infusions of Taxotere and Carboplatin, 17 infusions of Herceptin and Perjeta), the three-year rate of invasive-disease-free survival is 97.5%[iv]. The risk of my cancer returning three years after finishing Herceptin and Perjeta is 2.5%. The absolute risk of recurrence within the next ten years after a lumpectomy is 35%, but this risk is halved by having radiation[v] (of which I had 20 rounds).
At first, the prognosis seems not-so-bleak: 97.5% survival rate. But then I wondered, “what about after three years? And after ten years? And what if I am an outlier again? My risk of recurrence in the first three years (2.5%) is higher than my risk of getting breast cancer was in the first place (0.49%), and the risk of recurrence within the next ten years is substantially higher (19%)[vi].” I also wondered how I would cope with facing treatment again – and the associated hair-loss, nausea, fatigue, medical bills – should the cancer come back.
Cancer survivors cannot sit comfortably with the statistics pertaining to their diagnoses and prognoses. They must somehow live with the uncertainty of their futures, knowing that a long life is not guaranteed. However, a long life is guaranteed to no one, and becoming acutely aware of this fact through cancer diagnosis and treatment can be viewed as a gift: An opportunity to live and love more intentionally, more fiercely, than one would have otherwise; an opportunity to release your grasp a little and to relinquish some control; and an opportunity to practice faith.
In discussing the issue of faith, Dr. Martin Luther King Jr said “You don’t have to see the whole staircase, just take the first step.” As cancer survivors, we may not be able to see all the steps ahead of us, but having faith that the rest of the staircase is there can give us the courage to move ahead. And as we place a foot on each step, we can feel the certainty and promise of today, a day to witness, explore, discover, love, and live. We have this day to right our wrongs, correct our mistakes, to hug our loved ones, and to make a difference to someone. We have this day to demonstrate our love and faith to others as we walk through the fire of cancer.
You don’t have to see the whole staircase, just take the first step. – Martin Luther King Jr.
[i] https://www.teendriversource.org/teen-crash-risks-prevention/rules-of-the-road/seat-belt-use-facts-and-stats
[ii] https://www.nytimes.com/2017/04/12/well/move/an-hour-of-running-may-add-seven-hours-to-your-life.html
[iii] https://www.cancer.gov/types/breast/risk-fact-sheet
[iv] Minckwitz et al., 2017).
[v] BreastCancer.org
[vi] BreastCancer.org