There is no one-size-fits-all approach to cancer treatment. Patients often make personal choices based on countless cancer care and outcome studies. While some of this information comes from focused research, much comes from the meticulous collection of data by certified tumor registrars.
This is a process Ché Kuhns, CTR at Q-Centrix, has experienced from both sides. Diagnosed with breast cancer in 2009, Ché’s care decisions were significantly impacted by data collected from women who walked the same path. As a result, she is now 13 years past her cancer diagnosis.
Four years ago, Ché decided to earn her cancer registry certification and give back to the community that helped her, and millions of other Americans, evaluate the best treatment options. But what does it take to become a CTR, and how has the changing health care landscape impacted this vital role? What does the future look like for those interested in finding their purpose through clinical oncology data? We discuss with cancer registrars who are living through those challenges.
What is a certified tumor registrar?
Since obtaining her cancer registry certification, Ché has worked on a wide range of oncology data projects, helping influence and develop the future of cancer care. She and her 200+ fellow CTRs at Q-Centrix help hospitals manage all aspects of their cancer data, from comprehensive case finding to cancer registry operations and program accreditation support.
However, the role extends far beyond data collection. Certified tumor registrars are specialists in health information, working in hospitals and cancer treatment centers to gather and interpret the histories of cancer patients. The information and oncological biographies they curate on treatment, diagnosis, outcomes, and patient history are invaluable resources used to improve treatments and monitor results across the globe. In short, CTRs are researchers working to save the lives of every person diagnosed with cancer – just under 40% of all Americans.
“I feel I’m exactly where I’m supposed to be. I have a chance to help those cancer patients that come after me the same way I was helped. You can’t beat that for a job. As I work, I feel all those patients in all those waiting rooms around me.”
How to become a CTR?
People seek national certification in tumor registry work for many reasons, and everyone takes a different path. Before becoming a CTR, Ché was a nurse manager at a trauma center, a certified yoga instructor, and a competitive trap and skeet shooter for the Texas state team. When she began her road to certification at the start of the pandemic, she wanted to rediscover her purpose with a job that genuinely made a difference.
“I spent a great amount of time at The University of Texas MD Anderson Cancer Center in Houston the first year after my initial diagnosis. I thought it would be depressing; your days are filled with countless appointments and waiting rooms filled with other cancer patients.”
To Ché’s surprise, however, those waiting rooms were filled with laughter, funny stories, and, most importantly, hope. That hope came from knowing an entire team was dedicated to providing the best treatment.
“It struck me that we were all on the same team. From volunteers and lab technicians to the front desk and medical staff, we were a team working towards the same goal – lifting each other up.”
After winning her battle with cancer, Ché knew she wanted to rejoin that team as a CTR, paying it forward for the next generation of patients. To do so, Ché participated in the AHIMA certification program offered by the NCRA – one of several paths to becoming certified. Self-directed, online programs like AHIMA provide comprehensive preparation to help individuals qualify for the CTR exam and a position in a cancer registry.
Regardless of which program is pursued, all CTR candidates must also fulfill 160 clinical practicum hours and successfully pass the CTR exam. Review other paths to becoming a CTR, and the requirements of each, directly on the NCRA’s website. For those who have already completed their studies and have not yet sat for the national certification exam or those who have passed the exam and are just starting their new career, Q-Centrix offers a supplemental program: the Q-Centrix Institute. More than 50 clinical experts lead courses across all service lines for various clinical data specialties, including oncology.
What are the responsibilities of a certified tumor registrar?
The obligation of every CTR, according to Ché, is to tell the patient’s story as accurately as possible. The high degree of accuracy registrars deliver is often the vital difference between life and death for patients. Their findings drive state and national databases along with the research conducted using that data. Depending on the CTR’s experience and skills, that storytelling encompasses three significant roles.
Case finding is how many CTRs begin their careers. Only a select number of cancer cases qualify for abstraction and reporting. Accordingly, lists of admitted cancer patients must be thoroughly evaluated to determine which cases fall within the parameters.
Case finding is a great way to enter the field because it allows CTRs to become familiar with the type of cases they’ll be working through, building up the experience required for complete case analysis.
A cancer patient’s journey doesn’t necessarily end when the last page of the story has been analyzed. If cancer recurs or different types are discovered post-treatment, CTRs are responsible for documenting these changes for the remainder of the patient’s life.
Casework and analysis
The most demanding job of a cancer registrar is outlining and interpreting the patient’s cancer journey from diagnosis to the present day. Determining how the cancer was diagnosed and where the tumor was located to how the cancer was treated, the success of those treatments, and evaluating what other treatment options were available, a CTR analyzes vast quantities of data generated by the patient’s journey to provide a complete picture.
To accomplish their work, CTRs use a wide array of resources, including case notes, pathology reports, imaging, physician statements, and more. They also rely on standardized manuals to determine important factors such as histology, location, extent, and metastasis. To demonstrate the complexity of her work, Ché outlines an example of the considerations she usually makes while working on a case.
“Our work is that of an oncology detective. You know you have cancer or a tumor in the lung, but you also need to determine in what subsite of the lung the cancer originated. What is the full extent of the tumor? How many layers of tissue within the lung and other regions of the body has cancer spread to? Are any lymph nodes being affected? If so, are those lymph nodes regional or distant?
When a patient has surgery, you must also interpret what type of surgery occurred and how extensive it was. If they received other treatments, you must know what drugs were used and be able to distinguish between the different systemic and radiation treatments.”
As previously mentioned, accuracy in every step of this process is the ultimate responsibility of all CTRs. Ché stresses this criticality at every turn, reminding us that “every detail of what we do matters. If you’re not turning in quality data, realize you are negatively affecting research and patient outcomes across the country.”
What can tumor registrars expect for the future of their work?
Between the rising demand for experienced CTRs and a shrinking pool of qualified applicants, the future of oncology programs throughout the country is filled with as many challenges as opportunities.
For those driven by purpose, the CTR credential offers valuable opportunities to find a genuine appreciation for every workday. One of Ché’s most rewarding experiences as a CTR was helping the first facility she worked with begin reporting to the Commission on Cancer to work towards a new accreditation.
“That’s very exciting to me to see their growth and be able to move through that with them. Sitting in on their cancer committee conferences and ensuring my work meets the new standards has been a fantastic opportunity.”
However, Ché cautions that CTR work is complex, challenging, and constantly changing. This fact is indeed what draws many to become certified in the first place. In 2020, the Rapid Quality Reporting System and National Cancer Database annual call for data submissions were replaced, signaling a massive adjustment to previous protocols, and emphasizing the need for CTRs. Add regular updates to standards, constantly evolving care practices, and the increasingly competitive nature of hospitals; circumstances are becoming continually complex for registrars. Often, those changes are based on the data and insights submitted by CTRs themselves. As new research is compiled and our understanding of cancer treatment develops, so does the way we must follow patients’ cancer journeys.
What advice should CTR candidates be given as they prepare for their careers?
When asked to offer advice for those looking to become certified or to become more successful in the CTR role, several Q-Centrix CTRs highlighted the importance of adaptability and humility.
“The most important advice I would have for anyone looking to enter this field is that you can’t know it all. This field is so complex that asking questions is the best thing to do. Know that there are no stupid questions. Ask your colleagues for their opinions and how they would interpret something – even CTRs who have been working for 10-15 years ask questions every day to ensure we’re providing the most comprehensive and accurate information.”
“Volunteer in a cancer registry if you can. While it’s more difficult to get involved in physical practicum hours now with COVID-19, that is truly the best way to learn. If there’s an opportunity to spend time in a real, physical registry department, do it. It will go a long way in helping your career and performance.”
“I recently mentored a new CTR through the Q-Centrix Institute – what a great program for new CTRs and what an experience to train and see their growth in the field. The best lesson we learned was the importance of flexibility. One never stagnates in the field as there is always continuous education and strides in cancer treatment every day.”
“When I see new people starting, they’re afraid to ask questions because they don’t want people to think they don’t know what they’re doing. Know that I have never been made to feel dumb by any CTR I ask a question of. We are a supportive community, especially at Q-Centrix, because we want to get the data right.”
While tumor registry work is no simple task, it is easy to recognize that those in the field wouldn’t trade their work for any other role. For those willing to put in the effort, the life of a certified tumor registrar offers countless opportunities to rediscover personal purpose and empower patients to regain control over their care and their lives. Reflecting on her experience as a CTR, Ché provides a reminder of the value of this work.
“We love what we do, and we can’t wait to see how else our work will change the future of health care. While I’m over a decade past my cancer diagnosis, I became a CTR to get back on the team that surrounded me during my own experience with cancer. As I pour my morning cup of coffee before work every day, I know that I will do my very best for this team of mine.”