Lymphedema: A Hidden Struggle for Millions

• Lymphedema, characterized by chronic swelling often post-cancer treatment, affects an estimated 10 million individuals in the U.S.
• The likelihood of developing lymphedema varies significantly depending on the specific type of cancer.
• Management typically involves diligent daily care, which may consist of lymphatic massages and the use of compression garments.

Ashley Hodges, a 60-year-old from Fruitland, Utah, initially noticed a swollen arch on her foot. She was baffled about what caused it. After the swelling persisted, she sought help from a foot specialist, who suspected a vascular issue.

However, amid driving cross-country to assist her ailing parents, the swelling in her foot escalated into severe swelling throughout her right leg, extending into her groin and lower abdomen. This was clearly more than just a foot problem.

Upon a visit to her family doctor, lymphedema was suggested as a possible diagnosis, later confirmed by an ultrasound. This was a condition many people, including several healthcare professionals, are largely unaware of.

It’s not uncommon at all, though.

The Lymphatic Education & Research Network (LE&RN) reveals that up to 10 million Americans are affected by lymphedema and related lymphatic diseases, likely an undercount. This figure surpasses the number of people diagnosed with multiple sclerosis, muscular dystrophy, amyotrophic lateral sclerosis, Parkinson’s, and AIDS combined. Of those, around 7 million cases are linked to cancer and its treatments.

Retired Colonel Susan Fondy, a former Army flight surgeon, became acutely aware of the condition after her breast cancer diagnosis. After taking an eight-hour LE&RN course designed for medical professionals, she was surprised by how little is known about lymphedema. Following her surgery, a tightness she felt in her armpit was dismissed as normal. Only when this developed into lymphedema did she realize the vast gaps in medical knowledge regarding the condition.

She commented that during her medical schooling, lymphedema received little attention—only about 15 minutes of discussion despite its prevalence. She was diagnosed with cancer just as she was returning from her fourth deployment, a rather shocking “welcome home” scenario.

A Cancer ‘Souvenir’

Lymphedema arises when protein-rich fluid that should drain through the lymphatic system begins to accumulate, sometimes resulting in significant swelling. A simple internet search yields shocking images of limbs swelled to extraordinary sizes.

The risk of developing lymphedema varies by cancer type. For example, 70% of head or neck cancer survivors develop it, greatly altering their physique. In breast cancer, roughly 30% may be affected, as well as 30% of sarcoma patients, 20% with gynecological cancers, and so on. Remarkably, lymphedema can result from any cancer treatment, including prostate cancer therapies.

There are also rare hereditary forms of lymphedema, distinguishable from the more common acquired or “secondary” types that can occur at any age. Potential swelling can affect various body parts, including arms, legs, and even the face. This condition can diminish mobility, alter skin color, cause pain, and create sensations of heaviness. It may even necessitate new clothing, as regular garments may no longer fit.

Actress Kathy Bates, a survivor of both ovarian and breast cancer, has spoken publicly about her lymphedema, referring to it as a “souvenir of cancer.” She describes it as a “chronic, debilitating and permanent swelling.” In a video, Bates encourages those with cancer to inquire about preventative measures against lymphedema during treatment and to recognize early warning signs like tingling and heaviness. While lymphedema itself isn’t fatal, it can lead to serious infections.

Lymphedema can be frustrating, disruptive, and incurable.

The Research Dilemma

Advocates argue that lymphedema exemplifies the consequences of sidelined medical research. William Repicci, the president and CEO of LE&RN, expressed his frustrations about fluctuating funding for lymphedema research. He uses a roller coaster metaphor to describe the erratic nature of funding acquisition.

During a recent Lymphatic Forum, researchers reported that several grants had been canceled, with uncertainties surrounding the release of research funds going back to March or April. The possibility of research programs shutting down looms if money isn’t available soon.

The implications stretch beyond just lymphedema; studying this condition can provide valuable insights into other diseases tied to the lymphatic system, like diabetes and heart disease. Repicci stresses that neglecting lymphedema research has wider ramifications for public health, including conditions affecting kids born with lymphatic issues.

LE&RN had previously worked hard to integrate lymphedema research into the CDC’s Chronic Disease Education program, achieving impressive outreach through their initiatives. However, future funding remains uncertain with no money forthcoming, raising serious questions about the program’s viability.

Additionally, funding previously allocated for research into lymphedema was slashed, despite evidence showing that many military personnel suffer due to toxic exposure. For two years, funding had supported crucial lymphedema research, but recent changes have diminished support significantly, with lymphedema now absent from the fiscal 2025 budget consideration.

Fondy remarked on how shocking it was that lymphedema research dropped off the agenda, emphasizing it doesn’t cost additional funds to reinstate it for competitive bidding.

A Widespread Condition

While breast cancer is prevalent, lymphedema affects both men and women, as well as children. According to the American Cancer Society, around 1 in 8 men will face prostate cancer, which can be followed by lymphedema. The condition can also arise from unrelated incidents like car accidents or surgical trauma, and some origins remain undetermined. Long-term studies indicate symptoms can take up to a decade to surface.

Dr. Fatma Tuncer, a lymphedema specialist, highlights that the primary concern for affected individuals is quality of life. Many find their personal and professional lives significantly altered.

The National Library of Medicine notes that while a full cure is rarely possible, diligent treatment can alleviate symptoms and avoid complications. Long-term lymphedema cases carry risks of developing severe tumors.

Managing Lymphedema

Effectively managing lymphedema can require hours of attention each day, including putting on compression garments, maintaining skin hygiene, implementing self-lymphatic drainage, using pneumatic compression machines, and performing exercises to encourage fluid drainage.

Fondy, who consistently wears compression garments, reflects on how profoundly lymphedema impacts her life.

The Huntsman Cancer Institute is recognized for its excellence in diagnosing and treating lymphatic diseases, providing advanced surgical options, cutting-edge imaging, and certified lymphedema therapists to enhance patient care. Tuncer emphasizes that the term “lymphedema” is often first heard during diagnosis, with varying degrees of severity impacting individuals’ lives.

Treatments primarily focus on massaging areas where fluid accumulates and utilizing compression garments post-drainage to prevent further buildup. While some initially view surgery skeptically, it can offer some relief, although it often comes with long wait times and may not be recommended by many therapists.

Patients should be aware that surgery isn’t a guaranteed cure but could provide substantial help. Tuncer also points out that existing garments may not benefit everyone and that head and neck cancers present unique challenges in management. Infection prevention is crucial, an understanding that resonates with 62-year-old Kirsten Fox.

After being diagnosed with breast cancer and undergoing a double mastectomy in 2014, Fox faced complications from lymphedema. While her condition was initially manageable, it soon affected her work and daily life. After a minor bump led to severe pain and a hospitalization for cellulitis, she had to pause her treatment temporarily.

Eventually, surgery was recommended to facilitate fluid drainage, although initially, her insurance refused to cover it—a decision that was later reversed.

Now, Fox meets with her lymphatic therapist weekly and has adopted self-care techniques. She remains careful to avoid any injuries and often wears long sleeves to conceal the noticeable difference in the size of her arms.