President’s Corner: Cancer Survivorship Month

Greetings, all! And welcome to summer!

Advances in cancer screenings, early detection, treatment, and survivorship care led to a 32% drop in the cancer mortality rate between 1991 and 2019, which translates to about 3.5 million fewer cancer deaths. There are approximately 17 million people living with, and surviving beyond, cancer in the United States today, and more than 43 million cancer survivors worldwide. Every one of us working in the oncology field has been impacted by cancer, not only in our chosen profession, but we all know someone personally impacted by cancer. This year’s TxTRA board is fortunate to count two survivors among its members- Kimberly Kinney, a breast cancer survivor, and Mildred Jordan, a lung cancer survivor. During the month of June, we recognized both Cancer Survivors Month and National Cancer Survivors Day. Many registrars, particularly those that do not work in a facility or cancer program management, do not realize the critical role cancer registrars have played in this decline in the cancer death rate.

One of the most recent advances in survivorship has been ensuring each patient receives a survivorship care plan. This is a more standardized format of what most oncology programs called a follow-up plan in the past, given to each patient after treatment ends, that contains a summary of their treatment, with recommendations for follow-up care. In many programs, including my own, the cancer registry plays an important role in ensuring that standardized plans, based on our standard setters’ guidelines by site and histology, are provided to each patient. In partnership with clinicians, we have helped develop a comprehensive pathway for moving forward, beyond cancer, that includes not only schedules for physician visits and screenings, but physical, emotional, social and lifestyle support, such as suggestions for changes in diet and exercise and smoking cessation.

Data from registries has also changed the way cancer is treated, and we have contributed not only to the quantity but to the quality of life. Information from registries, collected by you, has helped stop the mutilation of tens of thousands of women, up to 90% of breast cancer patients persisting into the 1970s, by showing that the Halsted radical mastectomy did not have a survival benefit over less invasive procedures such as lumpectomy and total mastectomy with sentinel lymph node biopsy, with excision of the nodal basin only if necessary. If you are unfamiliar with the Halsted procedure, it was developed in 1894 and included not only the removal of the breast, but the musculature, along with lymph node harvesting from the arm down to the waistline, and even the removal of tissue unrelated to the breast, supporting musculature, and lymphatics. It left many women brutally disfigured, some unable to use their ipsilateral arm and in lifelong pain. More recently, we have shown -YOU have shown- that lumpectomy has an equivalent survival benefit, as does nipple-sparing mastectomy, in appropriate candidates, with a dramatic improvement in cosmesis, and reduction in life-altering side effects like lymphedema. In just this one site, breast, registries have been instrumental in ensuring patients are not overtreated, and thus facing a lifetime of complications as a direct result of their cancer treatment.

We also support survivors beyond cancer through our community outreach programs. Mildred and her facility, also one of my former facilities, Texas Health HEB, celebrate those who are both actively undergoing treatment, and those diagnosed within the past five years, by sponsoring the Bluebonnet Retreat. If you, a friend, or a loved one are a patient at Texas Health Resources, you likely know about this fantastic camp, the only one of its kind in North Texas. The camp is free, through funds from the Texas Health Resources Foundation Endowment, and provides not only fellowship, but the opportunity to work one on one with patients, while providing access to specialists like those in fitness, diet and nutrition, and oncology clinicians. The patients I met while working at Texas Health and gotten to know through the Bluebonnet Retreat’s social media since that time are lifelong friends, and I love helping support them. My Bluebonnet family grows every year and allows me to celebrate every clear scan, every step forward, with actual cancer survivors, and more importantly keeps me close, despite now working remotely.

There are many ways we can support survivors through our registries, facilities and in our communities.

  • Hold a celebration for a survivor, or survivors. Let them know you’re here for them. Today, I hope you’ll join me in celebrating Mildred, Kimberly, and all our survivors in TxTRA.
  • Form a team to take part in an annual event for a local cancer organization, like the American Cancer Society Relay For Life. It’s fun, gets us away from the computer, and again, provides a living connection to what we do.
  • Express gratitude for our providers and participate in their events. I know it can be a struggle sometimes sitting with them at cancer committee, or working with them during survey, but they are at the heart of what we do. They are crucial to our surveillance activities during survivorship, as well.
  • Simply talking about cancer with a survivor may be exactly what they need. Let them share their journey. As professionals in the oncology field, we see what they have undergone, we can “speak the language” of cancer.
  • Volunteer with cancer survivors, join them in their efforts to support one another. Show that you stand with them and celebrate their survival.
  • If you aren’t comfortable going out into your facility or community, advocate by sending letters to our legislators asking them to support our activities at the local, state, and national level.
  • Most importantly, simply doing your job supports survivorship every day. You’re amazing!

Surviving cancer is a unique experience for each person, and Kimberly (our beloved KK!) has written a very personal article for this newsletter which I hope you will all take the time to read. Also take a minute to check out survivorship statistics at the Surveillance, Epidemiology, and End Results Program (SEER), or read some studies at the National Library of Medicine- National Institutes of Health (NLM-NIH), the source of the statistics within this article, all of which are a result of your hard work.

Thank you!
~Kimberly