Breast Cancer Awareness, and Why Safety, Quality and Experience Matter

Added on Oct 10, 2018

By Carole Stockmeier, Partner, Press Ganey Strategic Consulting

carole and sonWe are in October—Breast Cancer Awareness Month. At this time last year, I started chemotherapy treatment for breast cancer. This year, I reflect on what has been a 15-month journey from my initial diagnosis on July 19, 2017. On that day, I said a prayer and asked God for three things.

1. Let me give thanks in all things.
2. Let me help others along the way.
3. Let me model for Max, my 6-year-old son, how to manage through a challenge in life.

To date, I’ve had 22 weeks of chemotherapy, 25 sessions of radiation therapy and six surgeries, with one more to go. While I’ll be glad to be on the other side of this, there has been so much good from so many perspectives.

Max and I have lived this together. He can tell you almost as much about cancer treatment as I can. We have smiled, laughed and played our way through it all. He’s quicker than anyone to pick out a pink ribbon. When he learned about Breast Cancer Awareness Month he specifically sought a pink shirt to wear to school last Monday. We have had a great past year, and cancer just happened to be a part of it. We continue to be surrounded by family, friends and colleagues who have been at my side whether in person or by phone, text or card. They have cheered me on, and have given me space to focus on my health.

Along the way, I met many wonderful, courageous people whom I would not have met otherwise. The bravest and dearest of all was a 30-year-old mother of two, Katie, with Ewing’s sarcoma. Katie and I sat through chemo treatments together. When I received a Press Ganey Courage Award last February, I told Katie I would accept that award in her honor, as I’ve never met anyone quite as brave as she. Katie passed away recently, and I’m a better person for having known her. I met Gabby just before I started chemotherapy a few weeks before I would lose my hair. Ironically, Gabby admired my haircut. She was looking for a style for the hair she had grown after finishing her chemo. Gabby shared her experiences with me, as I’m sure others shared with her, and as I will share with others after me.

Being on the patient side has given me a firsthand perspective of the safety, quality and experience of care that we work with our clients to influence. The first experience in my cancer journey was of compassionate, connected care. After having a diagnostic ultrasound on a Friday afternoon, I went to the grocery store across the street. Minutes later, I got a call from my primary care physician, who had just received the results of my ultrasound. She asked my preference of surgeon and said she would make the referral. As I was putting the groceries in my car, the surgeon herself called to schedule a biopsy for the very next Monday. Incredible.

Nearly all of my testing and care have taken place at a hospital in the system where I once worked as the director of Safety and Performance Excellence. Talk about shaping the kind of care you may one day experience! Every time I go there, I marvel at the work that’s been done: Safety and service are so much a part of the culture that you can’t tell where one starts and the other ends. It’s just how they do things. And that is a credit to a leadership team who personally and passionately believes that safety is the cornerstone of an exceptional experience.

There have been many standouts on my care team.

  • My tell-it-like-it-is medical oncologist, my primary care physician who calls me without fail before and after every procedure, and my plastic surgeon.
  • My physical therapist, Maureen. Physical therapy is not just about preventing lymphedema. Breast cancer patients would be well-served by having that physical therapy consult before the start of treatment rather than after!
  • My chemo nurse, Tina. She passionately believes in primary nursing where there is continuity in the nurse-patient relationship in the chemo setting. “When I know the patient,” she says, “I can recognize when something’s wrong even when it doesn’t show up in the bloodwork.”
  • My radiation therapists. Every day without fail, they would ask me my name and date of birth. They had them memorized after the first week. But they know as well as I that asking is not because they don’t know. It’s to force a pause and connect sight and sound to ensure the correct treatment plan is pulled up in the system.

I’ve had other insightful experiences as well. The first was when I realized I needed to change medical oncologists. There were issues in the practice that just didn’t feel right. Making a change was a big decision, and I made it just one week before my chemo was to begin. I swallowed hard as I made the calls to make the change. I remember thinking about patients who might not be aware that they can and should have a different experience when something doesn’t feel right, or those who don’t feel empowered to speak up to make the change. Another insight came when I realized I’d be on my own in making nutrition an integrated part of my cancer treatment. My interest in the role of nutrition in healing and prevention hasn’t been discouraged, yet care providers have not answered my inquiries with information on anything other than traditional treatment modalities. That should change.

The most impactful experiences, however, were the two safety events that occurred during my time as a patient—when I became part of health care’s harm statistics. Both events were precursor safety events. My harm was minimal. But even with 16 years of experience as a safety expert, I didn’t see either of them coming. It goes to show how vulnerable you are as a patient. Safety cannot be taken for granted—neither by patients nor by caregivers. While I advocate for Zero Harm as a professional, I am passionate about Zero Harm as a patient.  

During this Breast Cancer Awareness Month, we are reminded of the importance of annual breast cancer screening and performing routine self-exams. To those reminders, I’ll add this: Ask about and know the density of your breast tissue. Dense breasts have more glandular and connective tissue than fatty tissue. About 50% of women have dense breasts. Dense breast tissue appears white on a mammogram, as do breast abnormalities and tumors. This can make it difficult to differentiate abnormalities and tumors from healthy breast tissue. I found my tumor through a self-exam. And because I had dense breast tissue, my tumor could not be seen with 3D mammography. If I had not found my tumor or if it had been in a spot where I could not feel it, my cancer would have continued to grow and would have manifested at a far later stage. Learn more about breast density and the impact on cancer detection from the National Cancer Institute and DenseBreast-info.org.

Throughout the past 15 months, I’ve been sustained by a strong faith that has only grown stronger. In reflecting on that prayer that I said back on the day of my diagnosis, I’ve gotten everything I asked for, and so much more. For that, I am truly blessed.