MARCH-LYMPHEDEMA AWARENESS MONTH

I can't believe I waited until the last day of March to mention that March is Lymphedema Awareness Month!

After my mastectomy, my surgeon informed me that I had a high risk of developing lymphedema due to the surgery, radiation, and lymph node removal. He referred to me as a "triple threat." He encouraged me to see a lymphedema therapist for baseline measurements so we could assess how much larger my arm had become if I started to experience symptoms. He also provided other important information on the subject. I have since learned that some oncologists and even breast surgeons do not discuss lymphedema with their patients, which is shocking to me. What the heck??

Living with lymphedema has been challenging—physically, mentally, and financially. Unfortunately, I experience pain or discomfort from my lymphedema on a daily basis. Finding attractive and comfortable clothing that can effectively camouflage my much larger arm is often stressful and difficult. Additionally, the costs of compression garments and physical therapy sessions can add up quickly. Fortunately, advocates like actress Kathy Bates and many other supporters have worked hard to ensure that Medicare and insurance companies now cover most of our needs!

Today, I visited Cavell's, a specialty boutique that sells mastectomy and lymphedema supplies, to get fitted for new bras and lymphedema garments. It’s hard to believe, but some insurance companies still consider compression sleeves "cosmetic." Seriously??

I want to emphasize the importance of taking proactive measures regarding lymphedema if you are facing a breast cancer diagnosis. It’s essential to ask questions, research, and seek a qualified lymphedema therapist. Hopefully, there are more available than there are in my locality.

HAPPY TO ANSWER QUESTIONS

I am happy to answer any questions I can on the subject. I will soon post updated photos of my lymphedema arm and some pictures of the items I purchased today.

 

LYMPHEDEMA IS NOT JUST A LITTLE SWELLING

Most of you are familiar with this little box, right? Those of us on Facebook see it every time we log on to our accounts. 

              

One of my morning rituals is to sit down with a cup of coffee and log on to FB to see what my friends are up to. I typically scroll past the "What's on your mind?" box since I'm generally not coherent enough to share my thoughts until after my second cup of coffee. This morning, however, I just sat glaring at it while thinking.......

"Want to know what's on my mind, Facebook? Lymphedema SUCKS! That's what's on my mind! Thanks for asking!"

I didn't share that thought on FB, but I decided to share it here because I'm really frustrated. I did warn Y'all that I'm prone to pitching the occasional hissy fit, and I am definitely in hissy fit pitching mode today!

One of the things I find so frustrating about having lymphedema is that sometimes, after working diligently to get it under control by doing everything I've been taught to do, I have a significant flare-up for no apparent reason...WTH??

And that's what I'm dealing with right now. I've been doing my exercises, wearing my compression sleeve, and doing everything else daily(ish) that my OT wants me to do for my lymphedema, but here I am with a big fat Popeye arm this morning.

Maybe I was hesitant to mention my lymphedema flare-up on FB this morning because the last time I spoke about it there, someone asked, "Isn't lymphedema just a little swelling? Like when you consume too much salt??"  I felt like SCREAMING!! NOOO, it is NOT JUST A LITTLE SWELLING!

In all fairness, most people not affected directly by lymphedema probably don't know much about it. I had no clue what it was myself until my surgeon talked to me about it before my mastectomy. 

WHAT IS LYMPHEDEMA

Here is a brief description of lymphedema from a pamphlet I was given after my mastectomy--

Lymphedema is tissue swelling caused by an accumulation of protein-rich fluid usually drained through the body's lymphatic system. It most commonly affects the arms and legs but can also occur in the chest wall, abdomen, neck, and genitals. 

Lymph nodes are an essential part of your lymphatic system. Lymphedema can be caused by cancer treatments that remove or damage your lymph nodes. In addition, any type of problem that blocks the drainage of lymph fluid can cause lymphedema. 

Severe cases of lymphedema can affect the ability to move the affected limb, increase the risks of skin infections and sepsis, and can lead to skin changes and breakdown. 

TWO TYPES OF LYMPHEDEMA

Primary Lymphedema. Primary lymphedema is a rare disease that occurs when the lymphatic system has not developed adequately or is not functioning as it should from birth due to a genetic condition. It is called primary because the impairment is not due to a secondary cause like illness or injury. 

Secondary Lymphedema. Secondary lymphedema can happen if the lymphatic system is damaged from surgery, trauma, or radiation therapy. It is most common in people who have had breast cancer treatment, but not everyone who has breast cancer treatment gets lymphedema. 

EARLY DIAGNOSIS AND TREATMENT

Unfortunately, I was one of the ones who developed lymphedema shortly after my radiation therapy.

My surgeon had warned me that I was at high risk for developing lymphedema since he would be removing several lymph nodes (it turned out to be 11) and because I would undergo 33 radiation treatments.  

I am so thankful that my incredible surgeon, Dr. Quill, discussed the importance of watching for any signs or symptoms of lymphedema. He explained that diagnosing and treating mild and early-onset lymphedema is critical for halting the progression of this lifelong and often debilitating condition. 

Dr. Quill said that even the best oncologists rarely discuss lymphedema with their patients. Instead, they treat your cancer but don't address other aspects of the disease that can impact your life afterward, both emotionally and physically.

SYMPTOMS OF LYMPHEDEMA  INCLUDE:

• Swelling
• Heaviness and tightness, which might include tighter-fitting jewelry
• Small blisters that leak clear fluid
• Dull aching or other pain
• Skin thickening or hardening, which can sometimes look like an orange peel

Symptoms may occur gradually over weeks, months, or even years after cancer treatment. 

HEALTH COMPLICATIONS OF LYMPHEDEMA

Skin infections (cellulitis). The trapped fluid provides fertile ground for germs. The slightest injury to the arm can be an entry point for infection. The affected skin can appear red and swollen and is usually painful and warm to the touch. Your doctor will most likely want to prescribe antibiotics to keep on hand so you can start taking them immediately.

Sepsis. Untreated cellulitis can spread into the bloodstream and trigger sepsis, a potentially life-threatening condition that occurs when the body's response to an infection damages its own tissues. Sepsis requires immediate emergency medical treatment.

Skin changes. In people with severe lymphedema, the skin of the affected limb can thicken and harden to resemble an elephant's skin.

Cancer. A rare form of soft tissue cancer can result from the most severe cases of untreated lymphedema.

So, NO, lymphedema isn't "just a little swelling." 

And yes, lymphedema is a chronic disease, and sometimes flare-ups seem to come out of nowhere. However, with proper education, prevention practices, and management techniques, we can often prevent these flare-ups or at least manage the symptoms and get the swelling under control. 

I'm not an expert on lymphedema by any means, but I have learned a lot about it through online research, from my lymphedema therapist, and, of course, through my own experience. 

I will discuss some suggested treatments and management techniques in an upcoming post. I'll also share some things that have helped me with my journey with lymphedema. And hopefully, I will have good news about this most recent flare-up of mine! 

If you have any questions, feel free to ask!

PS. As I struggled with writing this post and figuring out how to explain lymphedema, I decided to take a break and check my email. One of the first emails that popped up was from a place where I purchased some of my compression garments. It was a reminder that today is March 1st and that March is Lymphedema Awareness Month.