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.

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 lympedema 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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27 thoughts to “Why Is Lymphedema Still Such a Mystery?”

  1. I have mild lymphedema in my right arm and side following my lumpectomy. I had a very large hematoma after surgery, had sentinel node removal and then radiation. My biggest frustration comes when dealing with my surgeon and radiologist during follow ups. Because I don’t have a hugely swollen arm they continually question whether or not I have lymphedema. My surgeon keeps telling me that only removing one node should not cause this. To which I reply that the hematoma and radiation are also risk factors. Without me telling her, my manual lymph drainage massage therapist can tell which areas are full of fluid and heavy, so I know I am not imagining this. It would be helpful for my specialists to be on board and not making me feel as if I am a malingerer.
    Thanks for listening.

    1. Meryl, It’s interesting your surgeon seems to be in a bit of denial. Any sort of bc surgery presents risk, as of course, does radiation. He/she must certainly know that. I’m glad you have a good lymph drainage massage therapist. But yes, it would be helpful for your other specialists to be on board as well. Thank you for sharing. Good luck managing your LE.

  2. One doesn’t always have the luxury of putting the sleeve on BEFORE the TSA, especially when flying from one airport to another with a layover and having to go through screening again. I always leave it on and endure the pat-downs. I would rather do that, than risk it becoming worse.

    1. Charnell, You’re right of course. One more I reason I fly direct whenever possible. But yes, we should be able to put on our sleeves whenever we choose, and they shouldn’t be such a mystery to TSA workers, should they? I think not.

  3. I fly all the time for work. I carry heavy equipment, not only as luggage, but on stage. I always wear a sleeve/gauntlet when out, and that includes the airport. Sometimes they do the pat down. I remember once, a “supervisor” told a woman TSA agent to pat it down, even though nothing shows on the screen. She looked at me, and asked if it hurts. I said, yeah. She was so gentle that it almost felt like MLD, just not in the right direction! She mouthed “sorry” to me and I gave her a big smile and thanked her. Sometimes the agents will ask about my sleeves because they look cool (Lymphedivas!) I wear them all the time, especially on stage. I actually try to make sure they are seen, especially on TV. Once in a while, I get tired of questions, but for the most part, I love being an advocate for us all. Why should I be embarassed or ashamed of this condition? Nobody should! Nobody wants any of this, but here we are. There are many who hide their condition, their garments, etc. If more of us came out of the “lymphedema closet”, people would understand what we are all enduring. Perhaps we’d have more doors held open, or assistance with groceries, etc. Even bathroom lines! I always request an aisle seat on airplanes too. Only once has someone said “no”. I told her, ok. I get up at least twice an hour for my medical condition. And, I did. On a 5 hour flight. 😉

    1. Kiku, Thank you for your comments, you make excellent points. Of course, not everyone feels up to taking on that advocate role and we have to respect that. A little more training for TSA employees doesn’t seem like asking too much and would go a long way. I love what you told the person on the plane about getting up twice every hour. Good for you. Thank you for helping to bring LE further out of the closet!

  4. I wonder if some of the silence is that it doesn’t fit well with the narrative? Cancer treatment gets rid of cancer, or doesn’t. If it’s got rid of the cancer, you’re lucky, now go away and get on with your life. Don’t moan on about the sequelae. You’re lucky to be alive.

    Lymphoedema was one of my big fears pre-surgery. I’ve been really lucky, though I do have a couple of odd bits of fluid in odd places.

    1. Sarah, You might be right about LE not fitting into the narrative well. Hadn’t really thought about that. I do know, some don’t like to “complain” about it because others have to deal with much worse. But there needn’t be a hierarchy of suffering. And who isn’t grateful to be alive? I still worry somewhat about LE, but try not to over-worry about it at the same time. Like usual, right? Thank you for sharing.

  5. I suspect that more women have lymphodema than is recognized in the statistics that are published. Mine was so slight that I didn’t even notice it until my second surgery (17 years later) when a therapist measured both my arms before I went in to the theatre. Between my left and right side, there was a 5mm difference in the wrist and mid arm, and slightly more in my upper arm. It was my non- dominant arm that was bigger so the larger size couldn’t be accounted for from using it more. The therapist was great and adamant that if I noticed any change in the measurements after my new surgery that I should contact her right away. But even so, how many women are going to go to the trouble of mentioning a 5 mm difference to their physician? I feel really lucky that I dodged a bullet on this one and would feel foolish complaining to my doctor about such a mild side effect when so many others are dealing with severe symptoms.

    1. Lennox, You are likely right about the numbers, especially since those baselines aren’t always taken. I’m glad you had and have such a good therapist; you’re lucky there indeed. At the same time, don’t hesitate to report any changes. And there’s no need to feel foolish about sharing minor things/changes with your doctors too. Having said this, I totally get what you mean. Thank you for reading and taking time to comment.

  6. I had not heard of lymphedema until you had it. That’s unfortunate no nurse or doctor even mentioned it to you before or after your surgery.

  7. I never heard of Lymphedema until today. Been dealing with a swollen leg/foot for about two weeks. This is after a hysterectomy for ovarian cancer and 4 cycles of chemo. Tried a water pill and the ultrasound doesn’t show a blood clot. Going for additional testing for them to see what’s going on, but doctor thinks it’s Lymphedema. Not good news. One more annoying side effect of cancer.

    1. Mary Ellen, I am sorry to hear you have one more annoying side effect of cancer, and a highly annoying one at that. Good luck with your upcoming testing. Thank you for sharing.

    2. My Lymphedema came about after having abdominal surgery for a perforated intestine. I have it in both legs and abdomen. I have the “heavy leg” syndrome which makes my mobility very difficult.

      Please note that any invasive procedure has the potential to damage lymph nodes. Secondary Lymphedema doesn’t always involve a cancer diagnosis, therefore is even more misunderstood.

  8. Hi Nancy,

    I get lymphedema flare-ups. What particularly annoys me is that my breast surgeon never told me about lymphedema. All he said was to not get shots or have blood pressure taken in my right arm. I had no idea why. Until my hand swelled up to the size of a grapefruit! Then I had to undergo a lymphedema class to understand all about this condition (that’s called putting the cart before the horse!). I also had physical therapy, which helped tremendously. I also have a sleeve and a glove that I wear on airplanes, but I hate them to be honest.

    Thanks for this post. I wish docs would be more forthright with their patients about this awful condition.

  9. This is an awful condition. My mother (now 82 with dementia) had a cervical cancer operation in her 60’s. The end result was lymphedema in her lower leg. She never took good care of it, even though she was a nurse, she ignored it after her custom compression stockings became too difficult for her to get on everyday. It got gigantic. Later, she was beginning to show signs of dementia and I convinced her to retire before they gave her the boot. Shortly after, she was having issues driving and I realized it was no longer safe for her to drive and live alone in the 2 story house I grew up in by herself. I asked her what she wanted to do since this situation became unsafe and she wanted to move in with me and my future husband. Shortly after this happened, she had a cellulitis attack. I got her to the hospital and realized it was all due to her lack of care for her lymphatic leg. I booked appts with her therapist and she taught me how to compression wrap and MLD. That same leg that looked so awful looks almost normal now after years of my constant care.
    Here is the dilemma. Her dementia has become very bad after her last bout of cellulitis. I had to put her in a memory care facility because I could not watch her 24/7. The facility told me they would help care for her leg if I showed them how. Instead, they pawned her off on Home Health Care and sent me a novice to care for her leg. I asked her if she knew MLD and she said “No.” Huge red flag. She also said Mom’s leg was one of the best she has ever seen. I thought to myself, “Thanks but if you do this treatment, why do your patients look bad?” So, here I am, just placed her and nobody wants or knows how to deal with it. This is terribly frustrating. Now I feel like I am back to square one and I will be the one to deal with keeping her leg in check even though we are paying for her to be cared for.
    Nobody seems to know about this condition but will YES you to death to get your business only to prove later that they will not take care of it, even if you show them how.

    1. Raiiney, It is an awful condition. I would go up the chain of command. Home health care workers report to RNs and others who should be knowledgeable about LE and how to properly treat/care for those who have it. Your mother deserves to receive proper care regarding all her issues, including her leg. Obviously, you can’t be in charge of that 24/7. I hope you get some answers and ultimately better care for you mother. You’ll likely have to make some noise. Good luck to you both.

  10. Hi Ya’ll! After 8 rounds of chemo for Triple Negative Breast Cancer in my Rt. Breast, my Lt. Arm started swelling. Just enough that my watch would not fit and I made a call to my oncologist who sent me to an ER for evaluation to rule out a blood clot. Of course it was a weekend. No clot, thankfully, but they kept me over night to rule out cardiac abnormalities! No diagnosis for the swelling. A few weeks went by with weekly chemo treatments and the arm kept getting worse, swollen from shoulder to hand. I had 3 more treatments left and both my surgeon and oncologist determined it was my port placement on that side of my chest causing the ‘swelling’. The port was removed but no change. Finally the RN, and by the way I am an RN too, told my doctor I needed to see a PT specializing in Lymphedema. By the time I got to her, my arm was 33% bigger than normal. Wrapping and twice weekly massages for 3 weeks and then a sleeve did the trick. I was not able to have a double mastectomy because of the lymphedema on my cancer-free side. No one really seems to know if the port or chemo drugs were the cause. My PT LE therapist is at her wits end trying to get doctors educated on early awareness and patient education.

    I am fine, cancer free, but wear my sleeve most days, use my compression device regularly and see my new best friend, LE therapist, twice a month. Education is a must. As an RN myself, I can’t remember being taught about our shared malady, but that could be because school was 30 years ago and chemo brain is still at work. Yes, this is annoying to say the least. I now worry about the odds I have been given of a 20% recurrence of cancer in my Lt. Side and what that would do to my lymphedema. Thank you for letting me share my story.

  11. I was diagnosed with stage 3 breast cancer after being the caregiver for my husband who was diagnosed with colon cancer. I was so busy taking care of him that I did not take care of me. After going thru chemo and radiation I developed Lymphodema in my left arm. I was not told about this condition and had no ideas what was causing the swelling. I went to PT for a month and slept in compression wrappings for a month as well as not taking this off at all unless I was having PT. Finally my arm was almost normal size. I wear compression sleeve on this arm every day but it still swells and hurts. I cannot wear regular long sleeves and I still have to use a compression machine. I don’t mind telling people why I have to wear a compression sleeve and am amazed that most people don’t know why.
    I would love to speak to groups of women and tel my story. Thank you for allowing me to tell my story here.

  12. 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!!!

    1. 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.

  13. 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.

    1. 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.

  14. 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.

  15. 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

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