A River Runs Through it – Until it Doesn’t:  Lymphedema Part 1

Home » A River Runs Through it – Until it Doesn’t:  Lymphedema Part 1

A River Runs Through it – Until it Doesn’t: Lymphedema Part 1

One summer afternoon, I drove past a group of young women entering a restaurant.  All clad in floaty sleeveless blouses, their arms swung loose and casual, naked in the golden sunlight.  I looked on with a yearning for what I had once taken for granted.  Both of my hands and arms were shoved into compression garments, wrapped like sausages from fingertip to shoulder despite the searing Phoenix heat.  Because of dual diagnoses of lymphedema, I will never again experience the simple, exquisite freedom of bare arms.  

We often hear the body is made mostly of water but where does all that fluid live?  Turns out, much of it resides in our mysterious lymphatic system; a component that is key to physical functioning but poorly understood even by most physicians.  The lymphatics represent an entire ecosystem operating just beneath our skin that functions as the body’s personal recycling plant; balancing fluids, delivering nutrients, removing waste, and cleaning up toxins.  Tiny streams of fluid move through miniature, pulsing gates that operate like one-way streets.  Once the fluid moves along the one way street, it can’t do a U-turn; so it travels on through the body with remarkable efficiency.  I took no notice of the lymphatics until they stopped functioning due to the complexities of Inflammatory Breast Cancer (IBC).  Lymphedema is the disease process that results.

Arm bandaging due to lymphedema that was made worse by chemo

In the United States, the most common cause of lymphedema is breast cancer and its treatments.  About 20% of breast cancer patients develop lymphedema in the months or years following treatment.  I was naïve enough to believe that if I awoke from my mastectomy without lymphedema I’d be home free.  Later, I  discovered that lymphedema could develop years after cancer treatment and that, especially with IBC, there is no escape from the risk.  

Growing up alongside mountain streams in Montana, I noticed that water always found its way.  Trickles of melting snow formed small streams that eventually transformed into deep rivers punctuated by frothing rapids.  Traveling underground or over boulders, sometimes creating mythic canyons, not much blocks the course of water.  And yet, in my own body, cancer interrupted nature’s inherent wisdom and brought to a halt the smooth passage of lymphatic fluid through my arms and torso.  

Although lymphedema may impact anyone with breast cancer, it is inextricably linked  with inflammatory breast cancer.   Early in the disease process, the cancer cells of IBC block lymphatic vessels in the skin covering the breast. This grants the IBC breast its typical appearance as swollen, red, and hot to the touch.  Cancer cells then recruit the lymphatics in their dirty work, affirming IBC’s reputation as an aggressive disease. 

The early stages of bilateral lymphedema: a compression sleeve on one arm and bandaging on the other
During the staging process for most types of breast cancer, the hope is that malignancy has not traveled beyond the breast. With IBC, involvement of surrounding lymph nodes at the time of diagnosis is a foregone conclusion. Once cancer gets into the lymphatics it tends to co-opt the delicate vessels as a personal transit canal; one designated with nefarious purpose. Cancer efficiently delivers its unwanted cargo to remote parts of the body, increasing the risk of distant metastasis. As is common with most breast cancers, IBC tends to metastasize to the brain, bones, lungs or liver. Chemo, surgery and radiation are prescribed to stop the disease from progressing.
Cancer often initiates the characteristic arm swelling of lymphedema, but the swelling is exacerbated by the very treatments that keep us alive. Chemo doesn’t play well with blocked lymphatics and radiation aggravates swelling in the arm on the side of the body with cancer. IBC patients undergoing a mastectomy will face removal of the axillary lymph node, a major lymphatic hub near the breast which drains fluid for a substantial portion of the body, including the arm, abdomen and chest. While its removal saves our lives, it generally results in an acceleration of the symptoms associated with lymphedema.
Lymphatic fluid pooling below my elbow. Now I wish my arm looked this good. My elbow has disappeared as lymphedema has advanced.

Although I had realized my risk in the months following my surgery, I held out hope that  I would be spared the challenges of lymphedema.  It was not to be.  Nine months after my first mastectomy, I received the official diagnosis.  My arm and hand swelled enough to be clinically measurable but the signs were there even before my surgery.  I knew this because I’d signed on for a clinical trial at MD Anderson Cancer Center.   What I didn’t anticipate was the extent to which lymphedema would drastically alter my life, including changing the type of clothing I could wear, the loss of my most treasured leisure activities, and the unrelenting campaign to move lymphatic fluid by artificial means, all day and all night.   Constant management of lymphedema reminds me daily of the quest to survive Inflammatory Breast Cancer.  

Note:  The clinical trial and tales of non-surgical and surgical interventions for lymphedema are topics of future blog posts.  

12 thoughts on “A River Runs Through it – Until it Doesn’t:  Lymphedema Part 1”

  1. Hi Clare. Such great article and wonderful piece of writing. You’ve really captured the lymphatic system workings and the travails of its disruption. I had all axilary nodes removed (18 in my case) 28 years ago. My lymphedema is not as severe but during two lengthy episodes over the years, it caused deeply painful aching from internal swelling. Both eventually resolved after extensive bandaging and massage treatment. But following carpal tunnel surgery a few years ago, the trauma once again overwhelmed the system and it returned, this time with external fluid build up in a sac above my elbow like you. My therapist said I may now have it permanently. IBC—the gift that keeps on giving.

    1. Thank you so much for your comments. Lymphedema is hard to live with but it is good to hear of other’s experiences. We are not alone! Yes – IBC is the gift that keeps on giving. I really appreciate your taking the time to read and comment.

  2. Very informative article Clare. Thanks so much for sharing. I know what beautiful arms are under all that fluid! Stay strong my dear friend!

  3. Lymphedema is awful!! Most people freak out about the mastectomy and how you would look or how some people define being a “woman” with breasts. Yes waking up from surgery and looking at yourself for the first time in the mirror, bald and the removal of a body part was difficult, I thought how I would be a good candidate for a Frankenstein movie and burst into tears. Nobody prepared me for lymphedema. Lymphedema is about quality of life and there is not much awareness in the field/public. When I was first diagnosed with lymphedema I was a week into radiation treatment and I ran into you at MDA. I was upset and you comforted me and then immediately educated me on what and what not to do. You introduced me to other patients with lymphedema. Honestly If I didn’t have the support from you I think my lymphedema would be so much worse. In my opinion you have become my mentor when it comes to educating me on lymphedema. There are no words for how grateful I am for you!! THANK YOU!

    1. Thank you for your comments and kind words. You capture the struggle so well. The mastectomy isn’t a big deal. Lymphedema, on the other hand, is completely life-altering.

  4. Very good description. As your sister worried about the cancer I remember naively thinking “lymphedema? Who cares.. let’s just get thru the cancer treatment we’ll deal w/ that later…” Little did I understand how big of a challenge for those w/ IBC to constantly manage lymphedema. There is no down time from it, it’s 24-7.

    1. I never could have imagined it myself but now that I’ve lived with it for several years, I have so much respect for the lymphatics. They accomplish a lot right under the surface.

  5. Your posts are so inspiring!!! Thank you for you courage to help others that may be experiencing the same …..I look forward to each post!!!

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