Lymphedema after Breast Cancer

I eagerly crossed the days off of my calendar in 2011-2012.  Not being someone to typically rush time, the end of breast cancer treatment couldn’t come soon enough.  Naively, I assumed that everything would go back to normal on the magical day I’d circled.  You know, that I’d pick life back up right where I’d left off. On March 12, 2012, I retired my countdown highlighter, ripped the calendar from my fridge, and moved on.  But, probably like you, I soon realized it was not over and “moving on” was easier said than done.

My surgeon warned me about lymphedema immediately after my first surgery, but that was months before, and after waiting for the symptoms to arrive, they never materialized.  I figured I was in the clear.  After all, I’d only had one lymph node removed, and from what I understood, although not impossible, lymphedema was highly unlikely.  Six weeks later, after radiation, I had intense pain in my armpit and swelling in my arm.  I couldn’t reach for cupboards, pick up dishes or do household chores without pain.  Something was terribly wrong.

According to the American Cancer Society, “Lymphedema is a build-up of lymph fluid in the fatty tissues just under your skin. This build-up causes swelling (or edema), most often in the arms or legs. Lymphedema can result from surgery or radiation therapy to treat certain cancers.” Many breast cancer patients find themselves afflicted with lymphedema after surgery and treatment.  It can develop immediately or many years after breast cancer.  After a few survivor friends mentioned that I might be suffering from it, I made an appointment with a local specialist and began my road to recovery. It turns out – more or less – that the radiation fried my lymphatic system in the upper quadrant of my body.  Fluid was pooling there, and I learned that if I left it untreated, it could possibly continue to expand as far as my skin would allow.  And that really freaked me out.

With the Manual Lymph Drainage massage method, my lymphedema therapist helped me regain use of my arm. She taught my husband, Jack, to perform it as well, and for many months, he helped me keep the swelling in check.  I visited her multiple times a week for a solid month until we noticed some improvement.  She also sent me home with rehab exercises after my initial visit, and I got fitted for compression. I still remember the agonizing pain as I donned my compression garment for the first time.  But armed with these tools, I was able to eventually get it under control.

I was still worried about my weightlifting, though.  An avid exerciser before cancer, I had fitness competition ambition.  I wanted to bodybuild, and just two weeks before I’d been diagnosed, I’d made the decision to start seriously training for a bikini competition.  That aspiration got derailed, of course, and after this ordeal, I assumed that I couldn’t fulfil that dream anymore.  My arm was not 100%, and I recalled in the beginning that I was advised not to carry anything heavier than my purse on that arm. “Nothing heavier than a purse?” How in the world would I be able to lift heavy weight to build the muscle needed for my stage debut?

Angela, my lymphedema therapist, supported me and helped me ease back into my fitness routine, and together we actually used bodybuilding to strengthen my arm.  In fact, I attribute weightlifting with keeping my lymphatic system in check.  Recent research has shown that weighted exercise is actually beneficial. According to breastcancer.org, “A study suggests that a careful weight lifting program that starts with light weights and gradually increases after breast cancer surgery doesn’t increase lymphedema risk and could possibly lower the risk of developing lymphedema.”  These findings were presented at the 2010 San Antonio Breast Cancer Symposium (SABCS).

It was a bit frustrating at first.  Accustomed to curling 20 pounders, she started me with just one pound bicep curls for the first week.  Then she graduated me to two, then the next week, three.  And it seemed like it took forever, because, well, it kind of did.  Under her careful supervision, and after following her directions, I’ve only had 2 noticeable flares, and both were prior to my return to training. Today, 6 years later, I am still at stage I, and I maintain a healthy arm.  I have successfully competed for three seasons.  I continue with monthly MLD maintenance, wear compression when exercising or flying, and pay attention to my body.  Lymphedema has not side-lined me, and at times, it is hardly noticeable.

True, with a cancer diagnosis, I have learned that it’s never really “over.”  I don’t mean that in a cynical way, but just that I do have to be vigilant and proactive.  However, I am able to do the things I did prior to cancer and actually more – even with lymphedema.  I look forward to increasing my strength in the gym on a weekly basis.  This summer I will be competing in my 5th fitness show, and I plan to bring my best package to date.  If you’re struggling with lymphedema, I highly recommend meeting with a specialist to develop a plan of action. It goes without saying, please consult your cancer care team before starting any exercise program.  My cancer care team has been key in my recovery, and seeking medical expertise was the best thing I ever did.

If you’re at risk to develop Lymphedema, Memorial Sloan Kettering Cancer Center has outlined the following signs.  Consult your doctor if you’re concerned you are experiencing symptoms such as these:

  • A feeling of heaviness or aching in your breast, arm, hand, or fingers.
  • A tight feeling in the skin of your arm, hand, or breast.
  • Less flexibility in your arm, hand, or fingers.
  • Swelling or changes in your skin, such as tightness or pitting (skin that stays indented after being pressed).

 

Victorious Val