If only I had been warned! If only, if only.
In 1996 when I had an operation to remove a cancerous lump from my breast, most doctors did not warn their patients of lymphedema. In the context of cancer this condition is a swelling caused by removing lymph nodes to stage the cancer, that is, to determine if it has spread beyond the area surrounding the tumor. For breast cancer patients, lymph nodes are removed from the armpit (a process called axial dissection). While a less invasive procedure called sentinel node biopsy, developed since I was treated, has reduced the incidence of lymphedema, it does not eliminate the risk. Later radiation under the arm can damage the remaining lymph nodes, increasing the potential of developing lymphedema.
My surgeon gave me little information about this condition. Importantly, I was unaware of the risk reduction practices recommended by the National Lymphedema Network (NLN) (www.lymphnet.org). Being a compliant person, I would have followed these guidelines had I known of them.
Having had 14 lymph nodes removed from my left arm and subsequent radiation, I was a possible candidate for lymphedema. About a year after surgery, after being poked by a thorn, I developed swelling in my left arm. It was not painful, but did not subside with elevation.
After consulting my support group I set up an appointment with a breast surgeon, who took my concerns seriously. She wrote a prescription for me to see a certified lymphedema therapist. The NLN provides information about the standards necessary for certification.
The best treatment for lymphedema is complete decongestive therapy (CDT). The initial phase involves manual lymph drainage (MLD), which redirects the fluid into newly re-formed fluid pathways, and 24-hour bandaging. I went to the hospital daily for six weeks to have the bandages removed for massage and reapplied.
After the clinical treatment, the patient transitions to the self-maintenance phase, in which the patient or primary caregiver is totally responsible for care of the limb. As part of this phase I wore a compression garment on my arm to control swelling during the day and then applied bandages at night.
The self-therapy phase of lymphedema is time-consuming and exhausting. The sheer volume just of hand washing sweaty bandages is mind-boggling. Not to mention the prescribed exercises in the morning and self-massage in the evening, plus wearing the bulky bandage every night. After six months I discovered the Reid sleeve as a substitute for the bandages. This sleeve and others like it maintain compression by means of Velcro straps or special foam contours. And they avoid the constant wrapping, unwrapping, washing, and rolling steps that bandaging entails. A true godsend.
After a year of strict compliance with self-maintenance procedures, I decided just to wear the compression sleeve on my arm daily. I ditched the night-time routine entirely. On a lengthy plane ride or climbing a mountain, I wear an old compression sleeve over my current one, for extra protection against swelling. Also I wear a hand glove if I experience swelling below the wrist.
It's ideal to buy two compression sleeves once a year so that they can be worn on alternate days. Every night I wash my garment with dishwashing detergent, fold it to squeeze out the water, and let it air dry. This procedure increases its lifetime. Medicare does not cover the cost of such garments at this time, but some private insurers do. Before ordering the sleeves, the vendor should measure the patient's arm properly to ensure a good fit. Last year's size and compression level may no longer be appropriate for the current year.
Air travelers with lymphedema, beware! From my own experience I offer the following advice in advance of any such trip: bring a prescription slip describing any special arm garments or pumps being brought aboard the plane, check as baggage all non-fragile lymphedema paraphernalia, and hide lymphedema devices in suitcases at hotels. If seeking reimbursement from Homeland Security for a ruined lymphedema device, see if the Americans with Disabilities Act applies.
Benzopyrenes (such as coumarin and flavinoids) and horse-chestnut extract are among some herbs touted to control lymphedema. Herbal supplements are not under FDA oversight. I would never consider ingesting them unless I first got approval from my medical oncologist. I always ensure that none would counteract legitimate prescription drugs I am taking. With his blessing I am taking Butcher's Broom, which I find effective in controlling hand swelling.
Forewarned is forearmed. I pray you can use some of these nuggets from my experience on the road to living with lymphedema.