Life After Treatment: Living with Lymphedema

A battle with cancer forces us to focus on the here and now. Medical decisions happen fast, we go into “battle-mode” and we deal with uncertainties as they arise. Meaning our healthcare is often hyper-focused on the immediate situation. While our lives may become disrupted, even put on hold, as we tackle imminent dangers, little thought is often given to the journey after. But for many of us, navigating the new normal beyond cancer treatment can be just as difficult and unsettling.

Very often, treatments such as chemotherapy, radiation and surgery can damage other parts of our body. When this occurs, our lymphatic system — the lymph nodes, glands, and tubes that help us fight infections and drain waste from our body — can become severely damaged. A condition known as Lymphedema may follow and can deal a devastating blow to our recovery.

According to breastcancercare.org, Lymphedema is a life-long condition often following cancer treatment that impedes our body’s ability to remove fluids, causing swelling, tightness, fibrosis, and pain to the impacted area. As Dr. Judith Nudelman, a family physician and certified Lymphedema therapist, shares of her own experience with the disease, “(Lymphedema) feels disfiguring and embarrassing.” Indeed, a diagnosis of Lymphedema feels so unfair.

But, there is hope. Better understanding, earlier treatment and powerful support from a growing community is now shedding light on a condition that, until very recently, has been overlooked. In this article, we’re shining a light on this often misunderstood part of the post-cancer journey. 

Upfront and Informed

Perhaps the best way to prepare ourselves for life beyond cancer, and cancer treatment complications, is to accept that our bodies can and do change due to cancer treatment. It can be harder to move forward if we do not accept that life will be different from this point on. In fact, even as we age our lymphatic system can weaken over time, according to Dr. Nudelman. Age, combined with treatments from cancer, and even some genetic factors may play a role in the likelihood of developing Lymphedema. But, according to Dr. Nudelman, when it comes to being prepared for the disease, many of us simply do not know about. And a general lack of training, responsibility, and education has been lacking in the medical community.

The Lymphedema Gap

Overlooking a condition that may impact as few as 6%— but as many as 70% — of breast cancer survivors sounds impossible. “As physicians we don’t want to think that we’ve actually caused harm to our patients,” says Dr. Nudelman in a recent podcast. “So, for many reasons, it’s just something that tends to be overlooked.” A general lack of knowledge about the condition has kept it in the dark. And, according to Dr. Nudelman, as recently as 1998, widespread misunderstanding meant many doctors thought there were no treatment options for it. 

Finding Support and Guidance

A lack of information may prevent early access to treatment for Lymphedema, which can occur at any time in our lives after cancer treatment. (In general, we are most at risk between one and three years after treatment according to Dr. Nudelman.) Yet, the sooner we seek medical care for the signs and early symptoms of Lymphedema, the more likely we are to see positive outcomes such as managing the disease and taking back control of our lives. In order to help the community access this support, a group of medical experts and women created an evidence-based, online support group called stepupspeakout.org. 

The Importance of Self-care

While knowing about Lyphedema may arm us and empower us to monitor for it and speak up when we suspect its presence, ultimately, we have to take our care into our own hands. While there are more and more practical and professional treatment options that can mitigate the symptoms, Lyphedema is an illness of our body’s once robust immune defense system gone awry. Without a properly functioning lymphatic system, we may be more prone to infection, barometric pressure, sunburn and injury. Therefore, maintaining self-care at home becomes paramount. Keeping a healthy weight, exercising, and using specialized compression garments can and do reduce swelling, fibrosis and pain. For many of us, managing Lyphedema is entirely possible. But, ignoring the symptoms and not seeking medical care can have detrimental impacts on our quality of life.

Managing a life-long condition may come as a shock to many of us who are facing recovery from cancer treatment. Yet, with support, understanding, and proper access to care, a normal healthy lifestyle is not out of reach. In fact, there is no reason to believe that a Lyphemedma should hold us back from seeking to live as normal a life as possible. Travel, exercise and our regular pre-cancer hobbies are not off the table. 

"We must accept finite disappointment, but never lose infinite hope." — MLK