“Cancer was a piece of cake,” Virginia Harrod says. “It was the lymphedema that almost killed me.”
NPR reports that nine months after Harrod’s mastectomy, her cat scratched her hand. She wasn’t concerned at first, but her doctor “recognized her symptoms as a serious and advancing infection.”
Harrod was in the hospital for eight days, and that’s when she first learned she had lymphedema. Over the next 10 months, she was readmitted twice more with dangerous infections.
Lymphedema (secondary/acquired) is a common complication of breast cancer treatment, but it gets short shrift from doctors when patients are assessing treatment risks. My experience confirms this research finding.
The lymphatic system transports lymph (limf), a protein-rich clear fluid containing white blood cells, throughout the body. A key part of the body’s immune system, lymph fluid moves through lymph vessels and hundreds of lymph nodes.
Lymphedema — swelling or edema — happens when the lymphatic system isn’t working properly. The more lymph nodes that surgeons remove, the greater the risk. Add radiation to the mix, and the risk basically doubles. And for an unexplained (to me) reason, a mastectomy increases the risk even more.
The risk of edema (swelling) results from a change in the structure of the body’s delicate lymphatic system.
Lymphedema reﬂects the ‘‘relative’’ imbalance between the rate of interstitial ﬂuid generation (lymphatic load) and the degree to which the lymphatic vasculature (lymphatic transport capacity) is underdeveloped or damaged.
Not only does lymphedema have a negative impact on the cancer patient’s quality of life, it imposes a financial burden that is often (usually) not supported by health insurance.
Clinicians should establish a surveillance plan because early diagnosis leads to early treatment and increases the likelihood for limited disease burden.
Baseline and follow-up measurements of the ipsilateral and contralateral arms of all breast cancer patients are critical. [Note: I had a baseline measurement of both arms in June 2017, because I was a candidate for a clinical trial. When my cancer was determined to be more advanced, I no longer qualified for the trial. There have been no followup measurements.]
Clinicians should practice personalized medicine strategies to minimize axillary surgery, should question the routine use of postmastectomy or regional nodal irradiation, and should use genomic tests to guide the use of chemotherapy to collectively minimize the additive effects of multimodality therapy. Patients should maintain a healthy body weight/BMI.
Surgeons should admit and accept that lymphedema risks exist and educate themselves and their patients about these risks at preoperative and follow-up visits.
Acknowledge the pathophysiology of lymphedema as a mechanical insufﬁciency alone is likely simplistic. Lymphatic obstruction, inﬂammation, immune response, complement activation, wound healing, and ﬁbrosis to the development of lymphedema. Therapeutic lymphangiogenesis and targeted inﬂammatory inhibition may aid structural and functional lymphatic improvement
Dr. Joseph H. Dayan, a reconstructive surgeon with Memorial Sloan Kettering Cancer Center, told NPR that “lymphedema is overshadowed by the fact that cancer is the priority.”
Dayan has been successfully transplanting clusters of healthy lymph nodes from unaffected areas of the body, such as the abdomen, to the breast cancer patient’s armpit and forearm.
Dayan explains that the node transfer procedure has been around for about a decade; but recent advances in imaging now help surgeons pinpoint which clusters of nodes are best to safely use — and that can vary from patient to patient.
At Montefiore Health System in New York, surgeon Sheldon Marc Feldman is helping to pioneer another type of surgery that is “aimed at preventing lymphedema from the get-go.”
Unfortunately, “lymph node transfer and lymphovenous bypass are performed at only a handful of academic medical centers in the U.S. and about two-dozen around the world. Not all insurance plans cover the cost.”
Manual lymphatic drainage (MLD) moves fluid from the swollen areas to where it can be reabsorbed by your body. Talk to your physical therapist or acupuncturist about this treatment.
Compression stockings help your lymphatic system function better. It’s best if your lymphedema therapist fits you with the stockings so you can be sure they fit well; too loose is just as bad as too tight.
Prevention and management
There are some things patients can do to reduce their risk of lymphedema:
- Have blood pressure checked in the unaffected arm.
- If you had lymph nodes removed from under your arm, do not have blood drawn or receive shots or IVs in that arm.
- Do not ignore any slight increase of swelling in the arm, hand, fingers, neck or chest wall (consult your doctor immediately). An inflammation or infection in the affected arm could be the beginning or a worsening of lymphedema.
- Avoid extreme temperature changes when bathing or washing dishes. Avoid or limit your time in hot tubs and saunas.
- Wear gloves while doing housework, gardening or any type of work that could result in even a minor injury.
- When manicuring your nails, avoid cutting your cuticles (inform your manicurist).
- Use SPF 30 or higher sunscreen to avoid sunburns.
- Use insect repellent when outside to avoid bites that could lead to infection.
- Avoid heavy lifting with the affected arm.
- No new tattoos in the affected area.
- Do not wear tight clothing, bands, shoes, or jewelry on the affected area.
- Wear a compression sleeve or stocking, if ordered by your doctor.
- Use unscented lotion daily to keep the skin moisturized.
- Maintain a healthy body weight by eating a well-balanced diet.
- Do light exercise or stretching.
- Ask your healthcare team which exercises are right for you. Some exercises may make lymphedema worse.
- Patients with lymphedema should wear a well-fitted compression sleeve during all waking hours.
- When traveling by air, patients with lymphedema (or those at risk) must wear a compression sleeve. Additional bandages may be required on a long flight. Increase fluid intake while in the air.
- Get help carrying, lifting, and pulling luggage that’s too heavy for you to manage comfortably.
- When traveling, wear loose clothing and do simple foot and ankle exercises while you’re sitting.
Read more: what is lymphedema and National Cancer Institute PDQ on lymphedema (patient version)