Why Is Lymphedema Still Such a Mystery?

Why is lymphedema still such a mystery?

As you, Dear Readers, are likely aware, March is Lymphedema Awareness Month. Sometimes, I think there are way too many designations assigned to each month to promote awareness for various conditions, diseases, and causes.

Who can keep track?

However, in this case, I say, bring it on. There is definitely a need for Lymphedema Awareness Month because lymphedema (LE) is still not well understood or even known about.

Again, why is lymphedema still such a mystery anyway?

Sure, things have improved in the awareness realm regarding this particular condition, but still, the mystery remains.

Unfortunately, along with that mystery, there is often stigma as well.

The mystery of LE is sometimes evident even within the medical community. For example, I sometimes still have to explain why I choose not to have blood pressure taken on my left arm or blood drawn from that arm.

And don’t get me started on wearing a sleeve while going through TSA when traveling by air. I finally learned to put my sleeve on after getting through TSA.

But why shouldn’t I be able to put my sleeve on whenever I want?

I still do not understand why no one mentioned potential lymphedema risk before or after my breast cancer surgeries, one of which did include the removal of fourteen nodes on my left side and two on my right.

I first learned about lymphedema while sitting next to a woman who had developed it years after her mastectomy while we both attended a support group meeting.

Why wasn’t I told about it by my medical team?

Why the mystery?

To briefly recap, lymphedema is a life-altering condition which affects up to 10 million Americans and hundreds of millions worldwide. Lymphedema can occur following treatment for other types of cancer, not just breast cancer. In fact, as stated on the Lymphatic Education and Research Network’s site:

All cancer treatment survivors, including those of melanoma, prostate and ovarian cancer, are susceptible to developing lymphedema.

Any time the lymphatic system is impacted by the cancer itself or cancer treatment (or other contributing factors), there is risk.

I will also add, even those undergoing prophylactic surgeries need to be aware of this potential risk. My sister deals with truncal lymphedema following her prophylactic mastectomy.

Lymphedema most commonly presents in the arms or legs, but can impact other areas of the body such as the chest, head, neck and genitals. Physical trauma and certain diseases, can trigger lymphedema, and primary lymphedema means a person is born with the condition.

So again, why the mystery?

To learn more and to better understand your risk as a breast cancer patient, read this earlier post, Lymphedema, What’s a Breast Cancer Patient’s Real Risk?

Obviously, the challenges of living with lymphedema are many. If you have lymphedema, it is certainly no mystery to you. But to many, it still is.

That’s why in this post, I want to share what a few readers, shared with me about their daily challenges living with lymphedema. Thank you, ladies, for your candor and for dispelling some of the mystery.

Christi had this to say about her biggest challenge:

The biggest challenge for me has been the restrictions that lymphedema has placed on my ability to use that hand. I am a writer who often writes the first few drafts in long hand. I am a journal keeper who finds maintaining a diary to be therapeutic. I am an artist who works with pencil, acrylics and oil. All of this is now limited by the swelling and pain of lymphedema. My dominant (left) hand is also the side where the nodes were removed. I worked through cording, I went for months of physical therapy, I exercise my arm every day. But I still cannot use it like before. Yet another part of me affected by cancer.

Kate said this:

Biggest challenge is keeping it under control. It is criminal that they don’t do arm measurements prior to surgery. Women should be given instructions about how to manage lymphedema and what early warning signs are so that they can take action while the condition is still reversible.

MacKenzie also noted the clothing challenge:

Buying shirts. Sleeves are not designed to be flexible when one arm is bigger than the other. It really limits options.

Jeannie mentioned her weariness of explaining about her sleeves:

I really hate having to answer questions constantly from strangers about the sleeves. I know it’s important to educate on this subject, but sometimes I just don’t want to talk about it.

Melissa said this:

The hardest part is how little people, including doctors, know about it and therefore, having to explain it and justify the restrictions and difficulties it causes in conjunction with all my other issues.

Terri agreed, adding this:

I would like to share that it is not discussed prior to treatment enough. I “wasn’t a candidate” so when my oncologist sent me to therapy, I was in complete denial. I had 6 nodes removed with my sentinel nodes because they were tangled. I’ve managed to control it but weather, food, lack of exercise and using my arm in everyday activities all effect it negatively. I wear a sleeve to work out, practice Pilates, have monthly lymphatic drain massages and constantly monitor it. If I get lazy, I get a flare up, and I quickly use my compression pump, but it’s so time consuming. I call it my cancer gift (and not in a good way!).

The bottom line is, there still is not enough discussion, education and forewarning about lymphedema risk. Nor is there adequate research, funding and support for those dealing with it. 

Lymphedema can feel very isolating and like usual, it helps to know you aren’t alone.

Again, thank you to those who shared comments for this post and thank you for commenting below as well. By doing so, you are helping to shed light on the mystery of lymphedema and helping others feel less alone.

Do you have lymphedema and if so, what’s your biggest challenge?

If applicable, was LE risk discussed with you prior to surgery or cancer treatment?

If applicable, how do you manage your LE and who or what is your favorite resource for guidance?

If you like this post, why not share it?

End the mystery. End the stigma.

Update: The Lymphedema Treatment Act Passed! Yay!

You might want to read: What Does Passage of the LTA Mean for You?

NOTE FROM NANCY: I wrote about cancer language, cancer worry, survivor guilt, loss, pet grief, COVID-19, DIEP flap surgery, life as an introvert, aging, resiliency, and more in EMERGING. Available at Amazon and most other online booksellers. Click on the image below to order your copy today!