Common Myths & Facts About Lymphedema

Myths & Facts about Lymphedema

Lymphedema is discouragingly common among cancer survivors. This is especially true of women who have undergone treatment for breast cancer. The removal of lymph nodes under the arm(s), and/or radiation therapy, may damage the lymphatic system. This can hinder its ability to do its job; draining high-protein fluid from affected tissues. This leads to an accumulation of these fluids, resulting in swelling and discomfort.

Myth: There’s No Treatment

It is true that lymphedema is incurable. But that does not mean it is untreatable or uncontrollable. Rather, prescribed therapies—including wearing medical-grade compression wear—can reduce swelling, decrease pain, improve limb mobility, and contribute to an enhanced quality of life, by enabling the affected person to engage in normal daily activities.

Talk to your doctor about Complete Decongestive Therapy. A certified specialist can perform manual drainage, while counseling you regarding appropriate compression wear, skin maintenance, and other approaches, such as prescribed exercises, which will improve your symptoms. Begin sooner rather than later, for best results. 

Myth: Lymphedema Didn’t Develop Post-Surgically, So I Dodged a Bullet.

Sadly, this is not always true. Post-cancer, therapy-related lymphedema can develop at virtually any time. While lymphedema often develops relatively quickly following surgery or radiation therapy, it has been known to crop up months or even years later, with relatively little warning.

Even minor insults to the skin in affected areas may precipitate lymphedema. For this reason, women who have undergone mastectomy of the right breast, for instance, are cautioned to never allow themselves to be “stuck” in the right arm for a blood draw. They must also pay careful attention to the general health of the skin, avoiding sunburn, scratches, bites, or other possible irritations to the skin of the affected arm. It may even help to avoid hot tubs or saunas, in order to prevent the arm from overheating.

Advancing age and obesity also appear to be risk factors that increase a cancer patient’s risk of being afflicted with lymphedema. While there’s no cure for aging, it is possible to attain—or maintain—a healthy body weight. In this way, patients may be able to reduce their risk of eventually developing lymphedema following cancer treatment.

Myth: I Only Had Limited Lymph Node Removal, So I Won’t Develop Lymphedema

This also, sadly, does not appear to be entirely true. It is true that removal of five or more lymph nodes is linked to a significantly greater risk of developing lymphedema. But even patients who have merely had one node removed have subsequently developed lymphedema. Every patient is different. There is simply no good way to be sure who will—and who will not—develop lymphedema in response to necessary cancer therapies.

Myth: I Can No Longer Lift Heavy Objects, or Even Engage in Exercise

On the contrary, post-cancer patients should be encouraged to resume physical activity, as long as it does not directly exacerbate symptoms. Being sedentary (not moving; being physically inactive) is actually linked to a greater risk of lymphedema.

Inactivity should definitely not become a cancer patient’s default response to surgery or radiation. Rather, seek to regain as much function in the affected limb as possible. Maintaining general physical fitness is another way a patient can reduce their risk of developing lymphedema. However, one should always consult one’s physician or lymphedema specialist before beginning any new exercise regimen.

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  1. I’ve never had cancer, and still got it. Why? My ankles swells horribly. I have it in both legs, not just one like many.

    1. Hello Olivia, there are different types of Lymphedema. Sometimes it happens because of the removal of lymph nodes, but it is also possible to be born with an inadequate Lymphatic system. Other times people develop Lymphedema after an insect bite or other injury. There are books available on the subject and there are also Lymphedema societies. You could probably find that information on line. I hope you can get help for your condition. I know from personal experience how uncomfortable it can be and how it impacts daily life. Good luck!

    2. I have the same and have stayed active. I did have two C-sections and have wondered if those surgeries could have disturbed a lymph node or more. I was told mine was congenital. What did you doctors say caused it?

    3. Olivia, Not to alarm you but edema is caused by other things such as heart problems.

    4. People who have lymphedema after cancer or other surgical interventions have secondary lymphedema and you probably have primary lymphedema.
      Primary lymphedema is congenital and can have an onset at birth, during puberty or in middle age.
      Lymphedema in both legs that does not come from surgery or cancer is called primary congenital lymphedema, bilateral, affecting both lower limbs.
      You can look up Milroy’s disease – that is the kind I have. Primary lymphedema is generally caused from under-developed lymph nodes or blocked lymph nodes, which would ordinarily assist in clearing the lymphatic fluid from the affected areas.
      If it is possible for your situation, the best management practices include elevating your limbs at night while sleeping, practicing a very low sodium, high protein diet filled with fresh fruits and vegetables, and wearing compression hosiery from the moment you step out of the shower or bath until you go to bed. Taking a walk every single day is very helpful, particularly going up and down stairs because this stimulates the lymphatics to do their own job even though they are impaired. I hope this helps you understand the condition you have and how to best manage it. I’ve had mine since I was 13 years old and I am now 57, so I understand how much work it is and how not fun it is to have to this condition. I wish you the very best.

    5. Hi, you most likely have primary lymphedema ,which means you were most likely born with it. I highly recommend you find a doctor that knows about this condition and can offer a physical therapist. Not many primary doctors know about, even today. It is a very slow moving disease and has no cure. The best that can happen is that you can decrease the swelling and lesson the growth, but with no diagnosis and treatment, it will get worse. I wish you the best.

      1. Agreed!!! Finding a good certified Lymphedema therapist that you trust and can work with you for the duration. Nortonschool.com has a therapist directory to help you!

    6. 16 yrs after bilateral mastectomy I developed lympedema in left arm only. I was never told about lympema . But, learned how t deal with it and prevent it. There are special therapists who can help. Thankfully I found one!

  2. I have lymphedema on my legs and have had surgery on left thigh have tble walkng and have compression garments which dont seem to help i hope one day it will get under control

  3. Thank you for the information, I have often wondered if I should be lifting heavy items with my effected arm but did it anyway. Now I know it is okay. I do seem to have a collection of fluid around my elbow, especially if it don’t put my sleeve on first thing in the morning. Can therapy help this.

  4. You don’t mention lifting heavy things. It is difficult for some of us with Lymphedema and shoulder issues.
    I have read a lot of research that speaks about the radiation and Lymphedema connection . Not just mastectomies, lumpectomies with sentinel node biopsies.
    I am not inactive or obese and I have extremely thin friends who also have Lymphedema.
    My Lymphedema spreads through out my body despite using a pump daily , wearing full compression, eating healthy, exercising, mld, supplements, dry brushing , yoga, meditation acupuncture and taking supplements.
    I find it limits what I am able to do, causes me pain, discomfort and fatigue.

  5. I am a nurse with lymphedema and I enjoyed this article. It was informative I learned some new things and was reminded of the others. Thank you.

  6. Being told I had lymphedema (both lower legs, with one larger than the other) was difficult to understand, especially at this time of life (senior). I am most fortunate to have an excellent doctor who knew at first look what it was. As an obese person, all my life, I am less active now than when I was young. And my sedentary career as a secretary did not help the situation as a whole (even tho I was at the gym almost daily for a workout). Thankfully medicine has learned a lot since my early years because treatment was there, we have answers and on-going research to get even better treatments, and life might have a few more road bumps, but we are still alive for our family and friends. We are education tools for them too. Thankfully, we have great companies like Lymphedema Products to help our journey have as few of those road bumps as possible. Thanks for a great article.

  7. I went 15 years without lymphedema after lumpectomy surgery and removal of 14 nodes. I played golf, ping pong and was active and not overweight during that time. I am now 89 and wear a compression sleeve 99% of the time. Still play ping pong and walk at
    least 1 mile per day (just recovering from total knee replacement). Stay strong, keep a positive mental attitude!!

  8. This was a good article. If only I’d seen it prior to my radical mastectomy, when my surgeon outright lied to me about the ‘chance’ of developing lymphedema when she removed the entire axillary pad…

  9. Thank you for a very informative article. You should submit it to the doctors magazines. They seem to be clueless (or just don’t care) I had to “twist” the arm of my PCP and then my cardiologist to get an order for help from my lymphedma specialist to help me with a flareup on my legs. Each time there is trauma to my legs/hips (surgery etc. ) or this last time a change in RX I have a flare up and the Drs don’t listen. When my PCP saw the excellent results at my next visit he just stared and made no comment Obviously I do not go to hom anymore.

  10. My lymphedema started a couple of years after my mastectomy and reconstruction. I googled lymphedema products and found they have machines that massage your arm, leg or any other part of the body that swells. I talked to my doctor about and he wrote me a prescription for one. The insurance paid for most of it. I sometimes use it at night and sometimes in the morning then put my sleeve on. Bowling is an activity that I’ve done for many years and still bowl every Wednesday.

    1. Hi Annette! Thank you for your feedback! Are you seeing a Lymphedema therapist as well? They can provide you with comprehensive care for your Lymphedema as well as garment management! While I don’t endorse use of pumps, I know they have their place for some people. I highly recommend manual lymph drainage by a certified Lymphedema therapist. If you need a recommendation you can find a therapist in your area at Nortonschool.com

  11. How about ovarian cancer patients who’ve had many lymph nodes removed and both legs are affected?

    1. Candace, the most important thing I can tell you is to find a certified Lymphedema therapist who can take proper care of you and your legs. Lymph nodes are all over the body and when anybare removed due to cancer-it puts that area at risk for Lymphedema as the lymph nodes that are left behind have to work extra hard to compensate for the missing ones! Norton school.com has a therapist directory!!

  12. Keep your eyes on Stanford University. They’ve been doing lymphedema/lipedema research for over a decade. They’re obsessed with finding answers. My daughter has the Prader-Willi syndrome. She had difficulty gaining weight when born but after age 2..she started gaining weight and never stopped. This syndrome is known for patients having insatiable appetites. She was put on a diet, an exercise routine and I was able to keep wt off at a minimun…she always seemed to be puffy. The literature never mentioned lipedema in this syndrome..just ‘obesity’… After gall bladder surgery and then an infected umbilical surgery leading to a tear (ventral hernia)..she developed ‘obvious’ lipedema. I believe that children in this syndrome are born with this condition. Then about 10 years ago the DHS allowed these kids to go on growth hormone…I do not see one child with this treatment having lipedema…isn’t tht interesting. I believe that we’ll solve this mystery…if I were a millionaire I’d put my money into this research because I see so many people suffering from this condition…We say we have an obesity epidemic in this country…is it? I wonder….

    1. Hi Tina, I have not found any foods in particular that flair up Lymphedema per se. I will look into this for you!!

  13. I have lymphedema on my left arm — the opposite one from my surgery; the swelling starts right above where the chemotherapy went into my arm. My lumpectomy was on the right breast with 3 lymph nodes removed, but the right arm is doing fine. I wonder whether anyone else has experienced this?
    I am able to control the lymphedema with compression garments, elevating the arm at night, occasional lymph massage, and regular physical exercise.

    1. How long ago was your chemo?? It’s possible that it traumatized your lymph and venous system in your arm. Did you ever have an ultrasound to rule out a blood clot??

    2. Hi KayJ. I too developed lymphedema in the opposite arm. I had a lumpectomy on my left breast but developed lymphedema on my right hand and arm. The same side that my port is located on. The doctors and physical therapist were unfamiliar with similar cases. I remain a mystery. Comforting to know that I am not alone.

      1. Have you had your port checked for blockages? I have seen this happen to people when the port is to blame.

  14. I have it in my lower extremities as well, but never had cancer. It was explained to me that my lymphatic system could have suffered an injury at some point in my life. That would contribute to the lymphedema. Hope this helps.

  15. Where do I find a lymphedema specialist? Had it since 2008 and never talked to a doctor that knew one thing about it. I have lymphedema in my arm, hand, and chest. I’ve gone to therapists that do massage and wrap, but this has never helped. Sad that there is no one to help with this. It’s a life sentence.

  16. Hi Marita! It sounds very frustrating for you right now. Have you seen a certified Lymphedema therapist?? If you had massage (manual lymph drainage) and compression bandaging, I am assuming that you have, however, you may need to find a new one if it didn’t work for you. You can go onto Nortonschool.com and look for therapist referrals there. You will get an email with therapists near you! Are you wearing compression garments of any kind??

  17. I was born with an underdeveloped lymphatic system, by about 12 years old I started to outgrow my lymphatic system and without the strongest of compression garments, my ankles would get as big as my thighs. Over the years, the back and forth swelling has caused increased damage and deterioration, making things increasingly worse. One of my nicknames in high school was Tree Trunks, and Cankles was something I regularly heard too. My hands would also swell to the point you could no longer see my knuckles even when I made a fist. My skin was very blotchy and would get much worse if my hands dropped below my heart, so I would always stay as covered up as possible and walk around with my arms crossed. I was the guy that wore pants and a long sleeve shirt out in public on 100 degree summer days so people wouldn’t look at me like I might be contagious and or ask what was wrong with me. I can also get very fast onset infections and would be dead 100 times over if it were not for antibiotics. And the pain, it’s a very unique pain to feel your skin begin to tear because it cannot stretch any further. Let alone the heavy uncomfortable feeling from swelling alone.
    Most of the people who share my rare birth defect become bed ridden and die at a young age. And there are only a handful of true medical lymphatic experts in the world, so you are largely alone in your struggle.

    As an adult I became radical about learning every avenue I could to fight against the swelling and infections. Today I would boldly make the claim that anyone with lymphedema who is willing to be radically proactive, can achieve near normalcy with their quality of life.

    Please, anyone, feel free to message me if this is an area you need help with.

  18. If you have bilateral ankle swelling but never had an injury to or surgery on your lower body, you need to have your primary doc rule out “common” edema. It could be the result of being on your feet a long time in hot weather (especially in too-tight shoes or sandals), or it could be the first warning sign of congestive heart failure. When I returned from a midsummer trip to Rome with severely swollen feet & ankles, my primary took an EKG and did a two-day trial of Lasix. My ankles & feet quickly returned to normal size AND I lost 9 lbs. It’s never recurred. I still take HCTZ as part of my blood pressure med, since my mom developed CHF in her early 80s (but she was also a smoker who had COPD). But no Lasix–the expression “pee like a racehorse” is no joke (they give it to horses whose legs have become swollen).

    My arm LE was “subclinical,” or Stage 0 (per my LE specialist–probably the foremost in the country). I had a R lumpectomy with 4 nodes (2 sentinel, 2 “hangers-on”) removed. As a precaution, I was fitted pre-op for a sleeve & gauntlet to wear on flights >4 hrs. After radiation I also developed mild cording in the forearm, which “popped” spontaneously. On my way back from my first trip post-op, I noticed some finger stiffness, so that’s why my LE doc said to wear compression on long flights–he said that he doesn’t prescribe it for asymptomatic patients with “only 4 nodes out,” but because I’d described mild symptoms he had me wear it for long flights. (Transoceanic only–have had no problems flying bet. Chi. & Vegas w/o it). He also had me take 6 OT sessions with a LANA-certified LE therapist. No problems since. I still do wear it if I am playing guitar outdoors on a hot day, and always at the gym.

    1. Thank you for sharing your story Sandy! Sounds like you have a very good team working with you!! I am always happy to hear positive stories! Keep up the great work!

  19. I have primary lymphydema tarda diagnosed finally after a vascular rxn to a flu shot; no cancer surgeries; have in left leg and toes and some in the rt leg; have a machine and comp hose; sad because now when I will be 65; I cannot see my lana LE Therapist only once in lifetime; so sad they do no not recognize lymphyedema as a diease that needs treatment; have had since in my 30 s ; had toxemia with my daughter and my left left was more swollen; rather scary to now be on your own; glad to be able to order the lymph products; hope I do the manual lymph drainage myself; recovering from knee surgery in left knee which has the more serious lymph issues!! we should all write to your congresssman for the bill they are trying to pass; need a good source for how to do the drainage; my therapist is trying to train me

  20. Hi Arlene. I am so sorry to hear your are struggling, but you seem to be doing everything right! Yes, it is quite frustrating when insurance companies will only Pay for a once in a lifetime period of treatment. However, Medicare now recognizes lymphedema as a chronic condition and therefore, are paying for ongoing therapy. Do you have Medicare yet? Also, are you on Facebook? I would recommend following Lymphedema Community as I post educational content on there and I also do demonstration videos for different topics (self MLD, exercises). Good luck to you!

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