Breast cancer survivors face numerous challenges in their recovery journey, but one of the most devastating and often overlooked complications is lymphedema. This chronic condition, characterized by swelling in the affected limb, can significantly impact a patient’s quality of life and pose substantial financial burdens. However, recent advancements in technology and a growing emphasis on prevention are transforming the landscape of breast cancer aftercare, offering new hope for patients at risk of developing lymphedema.
Lymphedema is a consequence of cancer treatment, particularly for breast cancer patients who undergo lymph node removal or radiation therapy. According to the American Cancer Society, up to 58% of cancer patients diagnosed with breast cancer, melanoma, or pelvic area cancers are at risk for developing limb lymphedema. For breast cancer patients specifically, this risk can climb depending on the type of treatment received.
The impact of lymphedema extends far beyond physical discomfort. Patients often experience emotional distress, social isolation, and a constant reminder of their cancer journey. In my experience with patients, early onset of lymphedema typically occurs between the ninth and tenth month post-operatively.
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One of the biggest myths about lymphedema is that it’s not preventable, treatable, or reversible. This misconception can lead to delayed intervention and poorer outcomes. In reality, early detection is crucial, just as it is for those who get a mammogram for early breast cancer prevention; it is equally crucial for lymphedema. Identifying lymphedema early allows for timely intervention that can effectively address all three aspects — prevention, treatment, and reversal — resulting in better quality of life and outcomes for patients.
Traditional diagnosis and its limitations
Historically, lymphedema diagnosis relied on visible swelling or changes in limb circumference which is measured with a tape measure. However, these methods often detect the condition only after significant damage has occurred. It’s crucial to understand that swelling is a late sign of lymphedema. The earliest sign, observed in most women and men, is an unrelenting, heavy aching that does not wax and wane.
This limitation in early detection has long been a frustration for healthcare providers and patients alike. Traditional methods such as water displacement, perometry, or tape measurements can be inconsistent and fail to capture subtle changes in fluid levels before visible swelling occurs. Tape measurements require waiting for a 2-centimeter change in limb circumference, making them a more reactive than proactive method.
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The BIS revolution: Early detection and prevention
Enter Bioimpedance Spectroscopy (BIS), a groundbreaking technology that is revolutionizing lymphedema care. BIS offers a noninvasive, quick, and highly sensitive method for detecting fluid changes in the body. By sending a small electrical current through the body and measuring the resistance, BIS can identify subclinical lymphedema long before visible symptoms appear.
BIS is designed to catch subtle changes in lymphatic resistance, essentially detecting when fluid isn’t moving as efficiently as we’d like. This early detection allows for intervention before symptoms occur, much like redirecting traffic before it hits a road detour.
In my experience, BIS has been a game changer in lymphedema care. It has transformed the process because it’s noninvasive and quick. Patients don’t have to get undressed, and the measurement can be done in real-time in a clinic setting. The patient simply steps onto the scale-like device, the measurement is taken and steps off with instant results.
The advantages of BIS extend beyond its ease of use. It allows for consistent, reproducible measurements, crucial for tracking changes over time and across different healthcare providers. This reproducibility is a significant advantage over other methods, enhancing the reliability of lymphedema monitoring.
BIS is rapidly gaining ground as a go-to technology in breast cancer survivorship care. Just recently, the National Accreditation Program for Breast Centers (NABPC), a quality program of the American College of Surgeons, updated its 2024 accreditation standards. For the first time, these standards include BIS as an evidence-based guideline for managing lymphedema. NABPC-accredited programs are required to adhere to evidence-based survivorship guidelines, regularly monitor their compliance, and undergo an onsite review every three years to maintain accreditation.
Implementing lymphedema prevention programs
The introduction of BIS has paved the way for comprehensive lymphedema prevention programs. These programs begin with establishing a baseline measurement before cancer treatment, which is considered the absolute gold standard in lymphedema care. This baseline is crucial because it allows healthcare providers to detect subtle changes in a patient’s physiology that might indicate the onset of lymphedema, especially given the numerous changes a body undergoes during cancer treatment.
Following the baseline, regular monitoring post-treatment is essential. While there are standard monitoring schedules (such as 3-6-9-12-18-24 months), it’s critical to set up a program that patients will adhere to. This often means aligning follow-ups with other appointments, such as visits to surgeons, oncologists, or physical therapists to ensure high compliance.
Patient education on risk factors and early symptoms is also a critical component of these programs. By empowering patients with knowledge, we enable them to be active participants in their care and to recognize potential issues early on. This education should include dispelling myths, such as the misconception that having lymph nodes removed will drastically change what a patient can or cannot do in their daily life.
When subtle changes are detected through BIS or patient reporting, early intervention strategies can be implemented. These might include wearing compression garments, exercise regimens, or manual lymphatic drainage techniques. The key is to intervene before the condition progresses to a more severe stage.
I cannot stress enough that best practice is prevention. Prevention means early conversations and baseline measurements before surgery, not after, and early detection of some kind. More importantly, these initial steps should be designed in the patient’s appointment schedule to not incur any additional costs, and a patient should never go into surgery without having had a conversation about lymphedema prevention.
The role of nurses in lymphedema care
Nurses play a pivotal role in the success of lymphedema prevention and management. As primary educators and points of contact for patients throughout their cancer journey, nurses are uniquely positioned to provide comprehensive lymphedema care. This includes conducting regular monitoring and assessment using BIS technology, providing patient education on lymphedema risk and prevention strategies, implementing early intervention when changes are detected, and offering emotional support and guidance for patients dealing with lymphedema.
Nurses serve as the hub, ensuring that all pieces of patient care fit together. They should regularly check in with patients about their symptoms and progress, serving as the central point that keeps the entire care team informed about the patient’s condition. For nurses who don’t have access to BIS technology, there are still crucial roles to play. Encouraging patients to be physically active as soon as they’re medically cleared is vital. Recommending gentle exercises like yoga, stretching, and self-massage can significantly benefit patients. However, it’s important to keep exercise regimens manageable – a set of 5-6 exercises that can be completed in 15-20 minutes is often more effective than an overwhelming program that patients might abandon.
My advice to fellow nurses is to engage in open conversations with providers, patients, and other stakeholders about what is practical for patients. By understanding what patients will and won’t do, allows us to tailor our approach and ensure effective follow-through. It’s crucial to recognize that each patient’s journey is unique, and our prevention strategies should be adaptable to their individual needs and lifestyles.
The future of lymphedema care
Lymphedema care is rapidly evolving. Recent legislative changes have improved coverage for lymphedema treatment garments, addressing a significant barrier to care. This means we no longer need to have difficult conversations about costs for these essential items.
Major oncology organizations are now recognizing the importance of lymphedema prevention programs as a standard of care. Additionally, BIS has emerged as a key tool in this regard and has gained recognition in various national and international guidelines which is driving increased insurance coverage for these programs.
As awareness grows and technology improves, we can expect to see lymphedema prevention programs becoming more widespread across various cancer types. I predict that in the next decade, this approach will become common and hardwired into every oncology program. We’re already seeing its application expand beyond breast cancer to other cancers that involve lymph node dissection, such as melanoma, prostate, and ovarian cancers. The potential impact on lower body lymphedema, which can be particularly challenging to manage, is especially exciting.
For nurses and healthcare providers, staying informed about these advancements and advocating for comprehensive lymphedema care will be crucial in improving outcomes for cancer survivors. By embracing technologies like BIS and implementing robust prevention programs, we can significantly reduce the impact of lymphedema and improve the quality of life for countless cancer survivors.
Remember, the treatment doesn’t stop just because we’ve removed the cancer. Our goal should be to make lymphedema a preventable aspect of cancer survivorship or at a minimum, manageable, rather than a debilitating aftereffect that diminishes patients’ quality of life. With early detection, proper education, and comprehensive care, we can revolutionize breast cancer aftercare and provide patients with the best possible outcomes.
Photo: belchonock, Getty Images
Sabrina Korentager, MSN, RN, BS, CLT-UE and advisor to ImpediMed, is a highly experienced clinical nurse with over 28 years in nursing and a strong focus on lymphedema research and prevention. She co-founded the Comprehensive Lymphedema Prevention Program at the University of Kansas Cancer Center in 2013, significantly advancing education, early detection, and care standards for cancer patients at high risk for lymphedema.
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