Living well with lymphedema

More than 18 million people in the United States are cancer survivors, and I count patients and dear friends among them. Survivorship comes with follow up plans for the cancer itself. It does not always come with a plan for the lymphatic system, even though surgery and radiation can scar lymphatic pathways and set up swelling that appears months or even years later. That swelling is lymphedema. It is long term, it is manageable, and the earlier it is caught the more reversible it is. This article is the plan I wish every survivor received.

Catch it early

Early lymphedema is subtle. It can be as quiet as heaviness or tightness in a limb, a ring or a sleeve that suddenly fits snug, or a puffiness that comes and goes. I teach patients a simple monthly ritual for exactly this reason. Measure both arms or both legs with a soft tape measure at the same spots each time, and compare sides. A difference of about two centimeters is a signal worth a call to your doctor. The reason I push early detection so hard is a hopeful one. In its earliest stage lymphedema is often reversible. Caught late, it hardens into a lifelong management project. Caught early, with the right therapist, it can be turned around. Your doctor should also confirm the swelling is truly lymphedema, because as the last article covered, swelling has many causes.

Yes, you are still at risk years later

Patients ask me whether the risk ends once a few years have passed. Most lymphedema appears within the first three years after surgery or radiation, but the scarring that causes it does not expire, so the possibility never fully goes away. A simple routine replaces the worry. Know your baseline measurements, watch for the early signs, and stay intuitive. You are the expert on how your body feels.

The gold standard treatment

The best evidenced care for lymphedema is complete decongestive therapy with a certified lymphedema therapist. It combines a specialized massage called manual lymphatic drainage, compression bandaging, exercise, and skin care, then transitions you to home maintenance. Lymphatic massage from a certified lymphedema therapist is absolutely worth your while, since it is evidence based care that has served patients well, and it remains very underutilized. It is even sometimes covered by insurance. In the Phoenix area I am glad to point people to Lymph Rehab, a nonprofit founded by a breast cancer survivor that supports breast cancer survivors with exactly this kind of therapy.

Compression, fitted properly

Compression garments create a gentle gradient of pressure that helps fluid move out of the limb. Two rules make them work. Get fitted by someone trained, because pressures are medically graded and the wrong fit does not serve you. Then replace the garment roughly every three to six months, because the elastic wears out quietly. For the legs, one safety check comes first. If there is any possibility of peripheral arterial disease, we confirm healthy blood flow with a simple ankle brachial index test before adding pressure. And compression is not started during an active skin infection. The infection gets treated first.

Protect the limb, guard the skin

If you have lymphedema or had lymph nodes removed, ask for blood draws, blood pressure checks, and shots on the other arm. Guidelines have grown more lenient about this over the years. My advice has not changed. If there is no harm in using the other arm, choose less trauma for the limb that is vulnerable.

Skin care is the other half of protection, because skin over lymphedema gets infected more easily, and infections there escalate. Moisturize daily with something clean and simple. I steer patients away from parabens and other endocrine disrupting chemicals in lotions, and simple carrier oils can serve well, such as calendula or chamomile oils. Wear a zinc based mineral sunscreen of SPF 30 or higher outdoors, and learn the signs of infection by heart, since heat, redness, spreading swelling, hardening skin, discharge, fever, or new pain mean a same day call to your doctor.

Flying with lymphedema

Air travel deserves a small plan. Wear your compression garment if one has been prescribed for you. Drink water generously. Keep the muscle pump working through the flight with ankle pumps in your seat, squeezing the muscles from the thigh down toward the foot, a walk down the aisle every hour or so, and stretches and fists if the arm is the affected limb.

If you are on hormone blocking therapy

One connection from my hormone work that survivors rarely hear. Estrogen supports the integrity and flow of lymphatic vessels. Aromatase inhibitors and other estrogen blocking treatments, which many breast cancer survivors take for good reason, can add lymphatic strain on top of surgical and radiation scarring. If your cancer was estrogen sensitive, those medicines are doing important protective work, so please never stop them on your own. Instead, know the connection exists, lean harder on the other levers, movement, compression, skin care, and sleep, and keep your oncologist and your therapist talking to each other.

Newer supportive tools

Patients ask what is modern and promising beyond the foundations. Red light therapy, part of a category called photobiomodulation, has growing research for skin and tissue support, including early studies in breast cancer related lymphedema. Acupuncture is another modality I consider fairly safe in trained hands, with research still maturing. Neither replaces decongestive therapy. Both are reasonable questions to bring to your care team before you try them, because with lymphedema I favor gentle, proven care over anything aggressive.

Common questions

Can lymphedema show up years after cancer treatment?

Yes. Most cases appear within the first three years after surgery or radiation, but the risk never fully expires. A monthly tape measure check at the same spots, compared side to side, is the simplest early warning system there is.

Is lymphatic massage legitimate?

From a certified lymphedema therapist, yes. Manual lymphatic drainage is a core part of complete decongestive therapy, the gold standard of care. Ask about certification, and ask whether the therapist collaborates with your doctor.

Consistency wins

Lymphedema asks for consistency more than intensity. Gentle habits, done consistently, go a long way. If you want a partner who looks at the whole picture, your hormones, your sleep, your lymphatics, and your goals, I would be honored to meet you. This closes the five part lymphatic series. Start from the beginning with meet your body's drainage system, or revisit swelling in one leg or both.

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References

1. American Academy of Family Physicians. Lymphedema Care and Cancer Survivorship in Primary Care.
2. National Cancer Institute. Lymphedema and Cancer.
3. familydoctor.org, American Academy of Family Physicians. Lymphedema.
4. National Cancer Institute, Division of Cancer Control and Population Sciences. Cancer Survivorship Statistics and Graphs.
5. MedlinePlus, National Library of Medicine. Lymphedema.
6. National Center for Complementary and Integrative Health. Acupuncture: Effectiveness and Safety.
7. Cleveland Clinic. Red Light Therapy: Benefits, Side Effects and Uses.
8. Baxter GD, Liu L, Petrich S, et al. Low Level Laser Therapy (Photobiomodulation Therapy) for Breast Cancer Related Lymphedema: A Systematic Review. BMC Cancer, 2017.

This article is for education only. It is not medical advice, and it does not create a physician and patient relationship. Please talk with your own clinician before making changes to your care, and see our full medical disclaimer.