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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 don’t 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 any 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?

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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.

Tammy’s challenges include:

Not being able to clean my house, lift or carry anything. Not being able to find any compression that fits, not even custom made fits. I have had 5 sleeves made, and adjustable ones are too big at the wrist to get big enough at top and do not stay tight a half hour. There is no garment for chest up to neck, side and back when I still have one breast.

Darlene shared about the difficulty of buying clothing that fits:

Getting clothes on over the sleeve and finding clothes that will work with a regular arm and a lymphedemic arm. Not necessarily the biggest challenge, but sometimes it’s the little ones that add up to feeling overwhelmed.

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.

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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?

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Why Is #Lymphedema Still Such a Mystery? #breastcancer #LE #womenshealth #cancer

Linda C Boberg

Wednesday 2nd of March 2022

I am going through a swelling in my right arm. At first the therapist thought it might be as a result of my cancer progressing, or that the weather suddenly got cold. The oncologist had to approve me meeting with her again and said, "She can just rub that out." WHAT???? Turns out the place I got the sleeve and glove from gave me the wrong compression in my glove so it was as if a water balloon was being squeezed in the middle and the lymph settling on the top of my hand. It looks like the therapist is helping to get rid of it, but I am angry that I have to go through treatment again, angry with the protocol of having to get referred by my onc who obviously knows nothing, and angry that the glove provider didn't check to be sure I got the correct glove. I have to go to war with her over this and that makes me mad. And I'm mad that I got it in the first place. Cancer sucks.


Friday 4th of March 2022

Linda, I don't blame you one bit for being mad. Seems like a waste of time to have to get approval before meeting with your LE therapist. All the hoops we jump through...And just rub it out? And you didn't get the correct glove. Geez. I'm sorry. I hope the swelling gets resolved soon and you get a properly size garment. Thank you for sharing.

Carmen Gerardo

Tuesday 30th of July 2019

Im a 19 1/2 yrs cancer survior .but i have lymphedema for 19 yrs .they removed 28 the whole cluster in my underarm .have worned a compression sleeve now forever .it is a part of my life ..i live in CA. Summer is the worst ever the heat is not our friend but life goes on n i have to do this .i do get my compression sleeve from a non profit group two sister they r my life savers for the sleevs r expensive i have been disable for 20 yrs so my funds r short .but with these ladies help. Im able to get what i need . well good luck everyone

Alene Nitzky

Friday 29th of March 2019

I am sorry to be so late to comment on this post. I am a registered nurse and I work with people who have been through cancer treatment in my community. There are several reasons that I see contributing to why lymphedema is not mentioned- I don't think surgeons, oncologists, or primary care physicians are learning enough in maintenance of certification or continuing education efforts. Perhaps they are learning about the condition of lymphedema, but they are not in the community seeing how it affects their patients every day.

There may be other contributing factors such as lack of time, wanting to avoid giving "bad news" during treatment planning or at the end of treatment, and also the lack of reimbursement by payors (insurance companies) for taking the time to educate and counsel. I feel that an effort is needed to show doctors that the things that are really important in people's lives do not always appear in a clinical setting- they are the things that the patient struggles with on a daily basis when they are not in a doctor's office. I think part of healthcare reform needs to change the way physicians deliver care in a rushed, factory-like environment- giving them more time and resources and staff to fully address all the "what ifs".

I see mostly breast cancer survivors in the work I do, and I can tell you that lymphedema is common, alive and well in this group of people. It's not a rare occurrence and yes it does happen when only one lymph node has been disrupted or the person has radiation. And no, they are not taking arm measurements at the outset for most people. We have a long way to go in helping with recovery after the treatments for cancer. I am focusing on these issues in my work and I hope to bring this to light in the medical community where I live.

Joyce M Colby

Wednesday 13th of March 2019

I only had a lumpectomy and declined chemo, so I probably shouldn't even be on this page. I'm two years out, and have had increasingly very sharp lingering pains in and under the breast right down to the chest wall. The kind of pain that literally takes your breath away and makes you double over. I never realized this could be lymphedema until I read my clinical notes after my last appointment. At the appointment, when I asked the oncologist about the pain, all she said was to avoid caffeine, and take vit E and evening primrose oil (which I already take). No one ever told me you could get this in your breast, or any place other than the arm. I was given the Mayo Clinic Breast Cancer Book at the time of surgery, and even this book makes no mention of lymphedema in the breast (I receive all my health care at our local Mayo Clinic Health System facility). Doing some research on the web, I discovered there is actually a term for this called truncal lymphedema which can be difficult to diagnose.


Thursday 14th of March 2019

Hi Joyce, Don't ever marginalize what you've been through. You are certainly welcome here. Even though you "only" had a lumpectomy and declined chemo, you've still been through a lot. Sorry to hear about your pains. Good luck finding the answers you need about that. Thanks for sharing.

Pat Jones

Wednesday 13th of March 2019

I was measured and told about lymphedema on that first day when I met my care team. Then I read about it and kept my arm propped on pillows. One day I threw the ball to my dog several times and the next morning my hand was swollen. Six weeks later I complained in my support group meeting and several said “lymphedema” and one gave me the number of the lymphedema PT. It had never occurred to me!!!


Thursday 14th of March 2019

Pat, I am glad to hear you had those baseline measurements taken on day one. That doesn't happen for most of us. Sorry you experienced that swelling. I hope you're getting proper followup, advice and support regarding that. Thank you for sharing.

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