5 questions with oncology nurse, co-founder of Lymphedema Prevention Program
Sabrina Korentager, MSN, RN, BS, CLT-UE, never imagined a conversation with a cancer survivor would catapult her career from an oncology nurse to co-founding the Lymphedema Prevention Program at The University of Kansas Cancer Center.
“I was working in oncology and routinely had ‘roundtable conversations’ with patients and survivors about various things, including changes that were needed at the cancer center,” Korentager, a now retired clinical nurse coordinator from The University of Kansas Cancer Center, and current advisor to ImpediMed, told Healio. “On this one particular day, I was speaking with a woman who had beaten cancer twice and made a complete recovery but was reminded every day that she had cancer because of her lymphedema. It was so profound to me that here is this woman who had beaten the odds and yet wasn’t able, from an emotional sense, to get past a cancer diagnosis.”
Korentager recalled thinking in that moment that she wasn’t too familiar with lymphedema.
“I later had the opportunity to take classes and learn more about the condition, what can be done for patients and why patients with cancer are at risk,” she said. “Then I met a surgeon who had been coming to our campus to start the breast cancer program a little bit more in depth than it was, and lymphedema happened to be her passion as well. From there, that became our brainchild of starting the first comprehensive prevention program for lymphedema.”
Healio spoke with Korentager about the purpose of the program, the intervention strategies that they developed and her advice for other women in oncology who may be interested in a similar career path.
Healio: What is the purpose of the Lymphedema Prevention Program?
Korentager: Lymphedema isn’t something that we, as medical professionals, should just watch and wait to see what happens. There has been a long-time thought in medicine that lymphedema is a common side effect and that if it happens, then we’ll deal with it. When we started this program, that was the general thought in medicine. It wasn’t necessarily that the field meant to have that attitude but we just didn’t know there were options.
It wasn’t until we came along and said let’s see if we can find it early and fix it early. Since that time, other organizations began to recognize that it doesn’t have to be a wait-and-see side effect. We can look for it and we can treat it and do better for our patients.
Healio: What intervention strategies did you develop?
Korentager: This has been a learning process for us. When we started the program, we had this grand idea of how we would make a difference. A lot of times, patients are prescribed garments for lymphedema, physical therapy, etc.
Initially, we had comprised this program of compression garments and massage, and things like this. But we recognized early on that to prevent lymphedema, we had to intervene differently because patients weren’t exhibiting all the signs and symptoms of lymphedema — we had to meet the patient where they were and figure out a way that worked for them.
That led to the creation of different intervention types. If somebody didn’t have full-on lymphedema and were only having early changes, one of the things that we did was supply compression garments because those are fairly easy and don’t interrupt patients’ day-to-day life. Then, instead of having them go to outpatient physical therapy where they needed to take time off work, get childcare, pay a copay, etc., we thought we could have patients do some form of physical therapy at home in a modified version. At that time, I was a licensed lymphedema therapist; I had gone back to school to make sure that I had the training to teach this to our patients.
We taught patients a modified lymphatic massage that was about 10 minutes vs. the 30 to 45 minutes that they would have at an outpatient visit. We had patients do that along with some basic stretching exercises each day because we know stretching is holistic, especially for patients undergoing cancer treatment who should be doing this anyway because of the nature of skin tightening that happens after surgery, radiation, chemotherapy, etc.
We put all of these components together and made an at-home program where patients were able to do this in the privacy of their own home, whether it be in the morning or after their children were in bed, that would take them anywhere from 10 to 15 minutes per day. We then monitored them in 4-week intervals and found we had an enormous amount of compliance with the program. Patients were happy to not have all those additional appointments, having to take time off from work, the added costs, etc.
Healio: What are you working on now?
Korentager: Through this process, we have found that the standard of care not only for breast cancer, but for all cancers, has changed. We know that lymphedema can happen with many cancers, such as prostate and gynecologic cancer, melanoma, etc.
This is an area that medicine has been hesitant to address for a few reasons. There also haven’t been good pathways, which is what I am working on now — finding pathways so every institution can find a way to implement some type of lymphedema surveillance program. The organization I worked for uses a fairly easy, quick, noninvasive type of measurement known as bioimpedance spectroscopy (BIS) that looks for subtle changes, and it’s applicable to all cancer types except head and neck cancer. I would like to see it become a standard of care for all cancer institutions to be required to have some type of lymphedema prevention for all cancers, because if we had that, we could dramatically decrease the incidence of lymphedema cases.
Healio: What advice can you offer other women in oncology who may be interested in the same career path as you?
Korentager: I often think back to that day I was having that conversation with that patient and realize that, had I not had that interaction with her, my path may not have led to potentially the best thing that has ever happened to me in my career.
This is a nontraditional career path for nurses. One of the beauties of being a nurse is that we can create a pathway wherever we go. I was a cardiac nurse for a long time, I had also worked in risk management, and I did a little bit of administrative work, but administrative work was not well suited for me.
I did have to forge my own way to get to where I am today. Initially, lymphedema was thought of as a physical therapy domain, not registered nurses. However, the nurse is really the center of how the patient accesses care in many ways. Surgeons provide amazing care, and all of the medical team provides amazing care, but oftentimes it is the nurse who is helping coordinate care and who knows what is really benefiting each patient.
I had to work at developing relationships with other teammates to show them how a registered nurse can be integral to lymphedema prevention. In the facility where I came from, we now have a handful of registered nurses doing this, and there are others throughout the country.
If a nurse is interested in this type of work, the first area of entry is oncology because that is where they will experience the most cases of lymphedema. For those who happen to be working in oncology and recognize the need for this, just speaking up and working with the providers at their institution may work. Many times, providers get questions from their patients about what lymphedema is and how to prevent it. By being a resource for those physicians, that nurse can find an opportunity to perhaps get a program underway and collaborate with other teams and providers within the system.
Healio: Is there anything else that you would like to mention?
Korentager: Lymphedema has been a passion of mine for some time now. In general, it is poorly understood. People think it is a side effect, but lymphedema is a disease that is preventable when caught early. Our own research shows that when caught early, we can reduce lymphedema by greater than 90%, even in very high-risk patients — those with very aggressive cancer. Ultimately, when you’re dealing with people who are experiencing a life-threatening disease, such as advanced cancer, you want to give them the best opportunity not only to survive, but to have an amazing quality of life once they have survived their cancer.
The conversation about lymphedema screening should begin at the very first appointment, which is when the navigation team can talk about the quick screening for lymphedema. It is important to start the screening at that very first visit to have that baseline when the time comes and you are having those crucial conversations about risk and all of the indicators. We have the information we need so that we can tell the patient that we have the information to take care of them because we started that process from the very beginning.
Lymphedema is something that, as a medical community, we need to do better with. Lymphedema needs more attention and it needs to be brought front and center to all cancer conversations.
For more information:
Sabrina Korentager, MSN, RN, BS, CLT-UE, can be reached at skorentager@gmail.com.
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