The Swollen Truth about Lymphedema

Lymph–what?

Before I personally became affected by its dreadful presence post-cancer treatment, I simply joined the rest of society’s collective yawn in not really concerning myself or knowing much about lymphedema at all. In fact, here we are at the end of March and until a mere 24 hours ago, I had no clue that March was Lymphedema awareness month. Who knew?

So what exactly is it?

This seldom talked about, yet debilitating condition known as lymphedema, means that your lymph vessels are unable to adequately drain lymph fluid—typically from an arm or leg—causing edema or swelling to develop. This blockage of the lymphatic system can be either primary (occurring on its own) or secondary (caused by another disease or condition). Secondary is far more common than primary lymphedema. In fact, one in five individuals who receive conventional breast cancer treatment will be affected by Lymphedema at some point in their life post-treatment. That 20% statistic can sharply increase (even as high as 70%) if any of the following were part of the treatment:

• Full axillary lymph node dissection (removal of lymph nodes above, below, and under the pectoralis minor muscle—known as levels I-III)
• Radiation to the lymph node areas after lymph node surgery
• Extensive cancer in the lymph nodes
• Chemotherapy
• Mastectomy rather than lumpectomy

So for me that would be:  check…check…check…check…and CHECK.

Now, if I’ve been consistent with anything on this journey, cancer has surely put me on the path of consistently landing in the bad side effects’ category breast cancer treatment can often induce and even the bad side effects to those side effects.

So lymphedema has joined my world. Permanently.

Now What?

When you’re in the warzone of cancer treatment, your sole focus is simply—getting through it. What happens on the other end of treatment is an entirely new battle, one with less direction.

About six weeks after my bilateral mastectomy, I noticed what appeared to be ropes forming under the skin, extending from the armpit where my lymph nodes were removed down my arm to the wrist. At my next surgical oncology appointment, I talked about the pain and reduction in movement in that arm, and after examining it she told me it was “cording.”

Cording? Apparently axillary web syndrome (AWS) or “cording” is a common sequelae of breast cancer surgeries, especially those involving axillary node dissection with mastectomy. The general school of thought is that trauma from surgery causes a hardening of the connective tissue, which causes those tight cords to form. While there is still a lot of mystery surrounding its occurrence, when you are affected by those thick rope-like strands visible under the skin—you painfully know it.

For me as with many others, post-mastectomy cording was the foreshadowing of lymphedema to come.

It wasn’t long after 35 rounds of radiation to my chest and remaining lymph nodes, that I began noticing pain and weakness in that arm. It was subtle at first, my arm feeling sore and tight, until it progressed to…me catching a football on the field, leaving an indent so deep on my small arm that you could practically see through to the other side. This is what doctors and nurses would refer to as a +4 on the pitting edema scale—very deep indentation lasting for over 15 minutes.

Throughout my entire course of active and hormonal cancer treatment, lymphedema was certainly not the first side effect to rear its ugly head. In fact, when all of my finger- and toe-nails began oozing with infection before lifting off from the poisonous chemo cocktails I was taking, I might have even prayed “anything but THIS side effect.” But the difference between that temporary side effect and lymphedema…is just that. Lymphedema stays for the long haul. Nails grow back and heal. Lymphedema lives on. And with that you must learn the most effective ways to live on with its ugly presence. So I found ways to help reduce the swelling and discomfort. How?

• Physical therapy. Here I learned ways to help retrain the lymphatic system to recirculate waste to other lymph node areas in the body through self-massage;
• Compression sleeve. I got fitted for a sleeve, and though it feels constricting, it helps ease the discomfort of pain while encouraging the lymph flow to not get blocked;
• Exercise plan. Under the discretion of your lymphedema specialist, a regular regimen of stretching and range-of-motion exercises can help strengthen the lymphatic system; and,
• Lifestyle changes. I’ve had to mindfully change the way I would once mindlessly use my affected arm. For instance, not carrying heavy items in that arm (groceries, handbags, etc.), trying to avoid trauma to the arm, and vigilance in keeping my hands gloved when cleaning to reduce infection/irritation.

These approaches are not the magic cure, but have certainly been beneficial in my case. Other, more advanced treatment options are also available for those with more severe cases of lymphedema.

Side Effects to Side Effects? Really?

I’ve always loved Russian nesting dolls. As a child, I would line those beautifully painted little wooden figures up, mother matriarch all the way down to the itsy-bitsiest solid figure, sometimes seeming to go on endlessly. Breast cancer for me has been the mama matriarch in what seems to be an endless set of Russian nesting dolls. The big C has given birth to a multitude of so many other “surprises” on this unchartered journey—lymphedema being one.

Sadly, I would love to say it was that final itsy bitsy solid figure to add to this proverbial nesting-doll-lineup, but of course, that would be somewhat boring…and Lord knows this journey has been anything but dull.

Having lymphedema as a side effect to cancer treatment means as a result, you are likely to face new, more serious side effects and challenges. For me those challenges have come in the form of infections. Complications from these infections can ultimately result in amputation of the affected limb or even death.

Last fall, I woke to what appeared to be a very red, swollen, extremely sore arm and my index finger (where I had pulled a painful hangnail from the night before), was also swollen. My first thought was, maybe I slept on it funny. So I took some ibuprofen and started my morning routine. I remember brushing my teeth thinking, why do I feel so weak this morning? Even though the pain and redness continued to worsen and spread, I realized I had no time to be whining, because my workday schedule was jam-packed and I certainly couldn’t afford to stay home sick.

By the time I reached my office, I collapsed on the floor.

A colleague rushed me to the local emergency room. My heart was beating out of my chest, my teeth were chattering with the chills, and my breathing was extremely rapid. After blood tests confirmed I had sepsis (and clearly going downhill), they rushed me via ambulance to Boston. That became my home for some days, infection reaching my lungs, around-the-clock contemplation of amputating my arm and pretty much my life falling apart.

But here I am, praise God—alive and well.

Sepsis is a systemic extreme inflammatory response to an infection that has spread throughout the blood and tissues. The extremely low blood pressure that often comes with sepsis limits blood flow to the body and can often result in organ failure and death.

As a cancer patient and more significantly…a lymphedema patient, I am more susceptible to these infections because my body is immunocompromised, and because of the weakened lymphatics, my affected arm is considered immunodeficient.

Sidebar: I urge everyone who has lymphedema to be under the care of an infectious disease doctor. These physicians are specially-trained in the recognition, treatment and prevention of infections. Mine has literally kept me in the palm of his hand, and I would hate to not have him as an emergency contact in my phone.

By me pulling a hangnail the night before, not only caused trauma to my affected arm, but it was the very tiny opening that allowed strep bacteria to enter the skin. That’s all it took to put me on death’s doorstep.

Suffering in Silence

Overall, oncology as a medical profession has all too often instilled in patients the idea that there are worse things than some of these silly side effects, including lymphedema, and the only real noble approach to deal with it is to stop complaining and suffer as quietly as possible. Who wants to do that? Because remember, lymphedema has moved in permanently.

Be proactive. Much of my knowledge surrounding lymphedema has been through my own self-education and talking to others dealing with it.

Suffering in silence results in one thing and one thing only—continuing to bask in society’s collective yawn. Change only comes when we demand it. Change only comes when groups coalesce around a compelling cause and systematically advance their agenda in every forum imaginable.

Breast cancer–related lymphedema is a real concern in the breast cancer community and though it’s been difficult to quantify due to both the delayed onset of symptoms and the lack of standardized diagnostic criteria, there is a need for more awareness and education. Be the voice for demanding more support.

One encouraging message about lymphedema is that effective management and skilled experts are available to help you. However, until there’s a collective voice drawing much needed attention to this condition, it is our responsibility to educate ourselves and ask questions along the way. It is our responsibility to get informed and share that information to help others along their, often debilitating journey.

Lymphedema Resources

Books:

Lymphedema: Understanding and Managing Lymphedema after Cancer Treatment by the American Cancer Society (American Cancer Society, 2006)

100 Questions & Answers about Lymphedema by Saskia R. J. Thiadens, Paula J. Stewart, and Nicole L. Stout (Jones & Bartlett, 2009)

Websites:

National Lymphedema Network, lymphnet.org

National Cancer Institute, cancer.gov