After my first breast cancer diagnosis, in 2010, the odds for a cure were seemingly all weighted in my favor. A routine mammogram screening had picked up a small—less than 1 cm—mass in my right breast, and a tissue biopsy confirmed it was stage I estrogen receptor–positive breast cancer. I had no family history of the disease, so I was unprepared for the diagnosis.
Still, because the cancer was discovered at such an early stage, and the only treatment I would need was a lumpectomy, followed by radiation therapy and 5 years of anastrozole endocrine therapy, it was a relief to be assured by my oncologist that my outcome would be good.
Pam Kohl
At the 5-year mark of the end of my treatment, with no evidence of disease, my oncologist declared me cured. When I asked him whether I should continue the aromatase inhibitor for another 5 years, which clinical trials were beginning to show offered a small additional reduced risk of cancer recurrence,1 he said, “No. You can look cancer in the rearview mirror. You are done. You are cured.”
My family and I were jubilant and celebrated my triumph over cancer. However, our happiness was short-lived. Three years later, in 2017, I had a cancer recurrence, which was crushing.
Waiting for an Elusive Cure
I had gone for my annual mammogram screening, and a few days later, I got a call back from the radiologist, something a cancer survivor never wants to get. She told me the film showed what looked like scar tissue from the lumpectomy, and I needed to have a follow-up mammogram and ultrasound to get clearer images of the lesion. After the ultrasound test, the radiologist said she still thought the lesion was scar tissue from the previous surgery, but I needed a tissue biopsy to know for sure.
The test came back positive for the same type of breast cancer as my original diagnosis. The news was devastating, but once again, I was assured this setback was “was just a cancer recurrence” and that after a mastectomy to remove my malignant right breast, and 5 additional years on endocrine therapy, I would be rid of the cancer and could get on with my life.
Throughout these conversations with my oncologist, he never recommended a positron-emission tomography (PET) scan to ensure the cancer had not metastasized to other organs, which raised my concern that not everything was being done to give me a true picture of my cancer status. When my radiation oncologist called to tell me she was 95% certain I would not need adjuvant radiation therapy following the mastectomy, but she was taking my case to the tumor board for confirmation, I asked her to recommend to the board that I have a PET scan to eliminate metastasis. Although she initially balked at my request because she said I was at such low risk for metastatic disease, she finally agreed to the test. A few days later, I got a call that the scan had picked up two spots on lymph nodes near my right lung. A biopsy confirmed I now had stage IV metastatic breast cancer.
Preventing Extravasation
I was prescribed palbociclib in addition to anastrozole to keep the cancer stable. However, several months later, I switched oncologists because I felt I needed someone who would take a more aggressive approach to my treatment plan. I was right. Over the past 5 years, the cancer has progressed to my bones and chest, and I have been treated with radiation, cryoablation, and the cyclin-dependent kinase inhibitor abemaciclib along with anastrozole, and the combination of treatment has kept the cancer stable.
However, I live in constant fear that the cancer will spread to distant organs. To stay on top of the possibility of disease advancement and to catch it early, I have a computed tomography scan and a bone nuclear imaging test every 3 months.
I rely on the accuracy of these scans to alert my medical team and me to the first sign of cancer spread. They are critically important for patients with metastatic cancer, as well as for newly diagnosed patients with cancer to stage the disease. However, I’ve discovered that a frequent injury called extravasation can potentially damage the tissue and distort the quality of the image, rendering it inaccurate. This happened to me during one of my nuclear imaging scans; since then, I’ve become involved with Patients for Safer Nuclear Medicine (www.safernuclearmedicine.org), a coalition of patient advocacy organizations dedicated to ensuring the safety and transparency of nuclear medicine scans.
This past spring, the World Health Organization issued a policy brief for health-care providers on the importance of integrating ethics into the existing framework designed to protect patients from harmful radiation effects during medical procedures.2
Living in the Moment
I have had metastatic breast cancer for 5 years. What is encouraging to me is that my treatment has kept the disease stable, and I know there are other effective therapies waiting for me once the cancer becomes resistant to my current regimen. I can’t help but worry, though, that at some point, I’ll run out of treatment options and will have to make difficult quality-of-life choices. I try to remain optimistic, but this year, three women in my metastatic breast cancer community died of the disease, so I can see my future.
To compensate for my possible limited time, I try to be very intentional about creating memories with my family and living in the moment. I also always have a plan B in case I experience harsh side effects from treatment. For example, if I’m planning a trip, I now buy travel insurance, which I never did before my diagnosis.
Women with early-stage breast cancer are given the message by oncologists that if we can remain cancer-free for 5 years we are cured, but with a tenacious and smart disease like breast cancer, that’s just not true. I am not asking you to take away our hope for a cure, but make sure it is realistic hope, so we can stay vigilant about our health and be better prepared for whatever our future may hold.
Ms. Kohl lives in Raleigh, North Carolina.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
REFERENCES
1. Davies C, Pan H, Godwin J, et al: Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of oestrogen receptor-positive breast cancer: ATLAS, a randomized trial. Lancet 381:805-816, 2013.
2. World Health Organization: Ensuring radiological imaging is ethically provided: New WHO policy brief. April 13, 2022. Available at www.who.int/news-room/feature-stories/detail/ensuring-radiological-imaging-is-ethically-provided--new-who-policy-brief. Accessed September 13, 2022.
