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Lymphedema, 7 tips for sorting out the confusion

Lymphedema – Seven Tips to Help Sort Through the Confusion

There still seems to be a fair amount of confusion out there about lymphedema in general, the true risk of developing it during or after breast cancer treatment and also about preventative measures a patient should or should not adopt as part of her/his lifestyle. Things are improving, but confusion persists.

Why is there so much confusion?

After my bilateral mastectomy I distinctly remember being instructed to avoid having my blood pressure taken on my left arm. I was also told to avoid having blood drawn from that arm. I was to avoid these procedures from there on out due to the fact fourteen lymph nodes ended up being removed on the left side. However, that was it. I don’t remember the conversation going any further.

As I recall, no one went on to state that I was to avoid these procedures in order to decrease my risk of developing lymphedema. And admittedly, before breast cancer I don’t believe I had even heard of this word/condition.

I didn’t learn about lymphedema until later when I attended a support group meeting and a speaker gave an informative presentation about it. At that time I was having some issues and after carefully listening to the speaker, I decided to get things checked out.

Eventually this led me to an appointment with a physical therapist. Ultimately, it was determined by my team that I probably did not have lymphedema – yet. But it wasn’t entirely ruled out either.

This is another thing about lymphedema, unless your case is severe enough, it’s sometimes hard to tell definitively if you do or do not have lymphedema.

I was then directed to be mindful of the potential risk of developing lymphedema. Measurements were taken so I would have a baseline (better late than never) and could be monitored from that point in time anyway. It was also determined I should be fitted for a compression sleeve and gauntlet and adopt the typical preventative behavioral measures into my new lifestyle as part of my new normal.

So, I’ve been wearing a sleeve when I fly and by the way, I had a very interesting experience recently getting through TSA wearing my sleeve. You can read about that here. Why the heck these sleeves are such a mystery to so many TSA employees is beyond me…

I wear a sleeve when I exercise, but admittedly only when I’m doing arm work or if I’m doing something strenuous and working up a “real” sweat.

I don’t generally wear one while gardening, raking or shoveling snow, but often wonder if I should be.

I don’t really worry too much about lugging around heavy stuff because I fear lymphedema, but rather I avoid doing this when I can because I have other arm/shoulder issues.

I do still carry my purse on my left side because I can’t seem to break this habit after all these years.

I don’t worry about  insect bites and cuts much, because well, what can you realistically do to avoid insect bites and cuts in real life other than being careful? I still have veggies to chop. I still live where there are lots of mosquitoes in the summer time. I still have weeding and yard work to get done…

I have resumed lifting weights, although I believe it’s very important to start slowly and of course discuss this with your doctor first. I’m not yet back to where I was on this, but that’s okay.

I do avoid having my arm in a hot tub and I have yet to go into a sauna because I’m afraid to.

Am I doing enough?

Am I doing too much?

Who knows?

I sure don’t.

And I don’t think I’m alone.

Now there is even more debate as to whether or not some of the long-time recommended preventative measures are necessary. You can find a recently updated position statement of the National Lymphedema Network here.

So again, this leads me to ask just why is there so much confusion?

Like usual, the simple answer is because there are no definitive answers. Lymphedema remains a bit of a mystery. It’s hard to determine who is truly at greatest risk of developing it and in this, too, there may be a genetic factor at play.

As usual, more research is needed.

The following tips might be helpful in sorting out some of the confusion, but they are not to be taken as medical advice:

  1. Know your own medical/surgical history. If you’ve had surgery involving lymph nodes, find out how many were removed. Get a written record of this.
  2. If you are facing surgery for breast cancer (or any surgery involving lymph nodes), ask to be measured beforehand so there will be a recorded baseline. This will enable you to be more effectively monitored later on if swelling occurs.
  3. Discuss lymphedema risk with your doctor(s). If you don’t bring it up, they might not. Also discuss their viewpoints on preventative risk behavior adjustments, if any, that you will be advised to make.
  4. Learn what you can. Visit reputable sites such as:  The National Lymphedema Network; Step Up, Speak Out and Lymph Notes.
  5. Familiarize yourself with the symptoms of lymphedema such as a heavy or tight feeling, swelling, change of color or general change in skin condition of the affected extremity. As always, if in doubt, get things checked out.
  6. Remember you know your body and your lifestyle best. Make decisions, adaptations (after learning what they are, of course) that you feel might be beneficial and also be changes you can live with. Recommendations are evolving on this front, so ultimately you decide.
  7. Ask questions and keep asking until you get answers that make sense to you.

In short, become a well-informed patient and self-advocate regarding lymphedema too.

Nothing new there, right?                          

Other posts on lymphedema you might be interested in:

Musings From a Lymphedma Lady

Lymphedema, Another Reason for Self-Advocacy

Getting Through TSA as a Cancer Survivor

LympheDIVAs – Medically Correct Fashion for Lymphedema

Do you have lymphedema? 

Have you adopted any of the recommended preventive life-style measures?

Do you feel confused about lymphedema issues at times?

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Seven Tips for Sorting Out the Confusion About Lymphedma
Image via Lymphedema Mavens.

 

 

 

 

 

 

31 thoughts on “Lymphedema – Seven Tips to Help Sort Through the Confusion

  1. Lymphedema is another under educated subject, I feel. After my chemotherapy, I began going to saunas never knowing there was a risk – oh, and hot spring waters too. My arm is fine, and I’ve done these things many times . . . but had I known of the risk before, I might have chosen differently.

    1. Catherine, It is an under-discussed risk of breast cancer surgery that’s for sure. I’m glad to hear your arm is fine and you probably don’t need to worry too much about LE, but just stay aware. Thanks so much for commenting.

  2. I have had Lymphedema since before I was diagnosed. In fact an ER dr asked if I had Breast Cancer on an unrelated visit to the hospital. I had a cut foot that I was developing Cellulitis. I tod him I had this swelling for several months. I had moved my family Dr said it was swollen from “straining it” ER Dr then said they would do an Ultra sound to rule out a blood clot. So while having the ultra sound they did a lump on my side as well that my Dr said was common with women. We all know (who know me) how that turned out. Stage3 Grade3 Multifocal Breast Cancer. I have never been able to get rid of it and it is especially bad and painful in my left hand because I have a very enlarged Lymph Node under my left arm and swelling in my chest wall. there are days that it is so painful with neuropathy on top I just cry. I have lost a lot of use in my hand. I don’t carry heavy objects or my BP one the cuff won’t go on my arm Can’t find a vein for blood work. I do have a method in pushing back the pressure with gentle pressure pushing it away from the body. I have an ugly sleeve that does not fit properly.
    I will be so glad when I can wear clothes (if ever) that the left sleeve will fit…
    Love Alli XX

    1. Alli, Oh my goodness, I didn’t realize this was how your bc diagnosis came about. I’m sorry about all of it. You’re all too familiar with LE then aren’t you? I’m wondering if you’ve seen a LE therapist and I don’t think you should have to put up with an ugly and ill-fitting sleeve. I know they aren’t cheap, but have you checked out LympheDIVA’s line of products? Thank you so much for sharing about LE. This subject needs to be openly discussed.

  3. Lymphedema is real and it can negatively impact a woman’s quality of life.

    There are known risk factors: lymph node removal, radiation, infection. At one time weight was considered a “risk factor” until a lot of thin women showed up with the condition:)

    Since I was diagnosed with it while still undergoing treatment I learned about lymphedema immediately. The Vodder method of lymphedema therapy is the highly regarded. Ultimately I learned what is a trigger for me. If you don’t have it – celebrate – and just be smart and use common sense. Any woman who has had a lymph node dissection is at risk at any point in time. It really isn’t confusing, just something we need to keep in mind as a precaution.

    The only change I’ve noted is in the role of exercise.
    It’s now thought that exercise – under a supervised program of gradual increased activity – is helpful, not harmful.

    Thanks,
    jms

    1. Jody, I didn’t realize you had been diagnosed with LE. Thanks for sharing that and you’re so right, LE can impact greatly the quality of life. I do respectfully disagree about the confusion. I think there is still plenty of it. Others have mentioned to me how they are unsure of what precautionary measures they should or should not be taking. I know I’m still confused at times and I’m not entirely sure if I’m doing enough or doing too much. And there isn’t even agreement as to what those guidelines should even be. The main thing I guess is to be aware of body changes and skin changes too. Early treatment is critical. Thanks so much for commenting, Jody.

    2. I also want to make a comment here. I had a mastectomy left breast, and no one said a word about LE. Well, I had no arm lymph node envolvement but they did a senti node biospy before the mastectomy. There are lymph nodes in the breast. WELL guess what? I developed it in my left side ..after the surgery! I now wear a compression camisole …….and the whole thing makes me mad! I have a frozen shoulder, swelling like crazy.

      I am glad the cancer is gone, but who knew about everything else that comes with it? Grrrrrrrrrrrrrrrrrrr

      1. Bonnie, I hear you! I’ve read that anyone undergoing breast surgery of any kind is at risk for LE. I wasn’t told about risk beforehand either, but even worse, not after as well. I understand the anger. Go ahead and grrrrrowl once in a while! It’s healthy IMO. Thanks for sharing.

  4. What a thoughtful blog post! Step-Up, Speak-Out is a wonderful by-patients-for-patients resource, and on the topic of exercise, there are some new resources explaining guidelines for safe exercise. On this page http://www.stepup-speakout.org/ you’ll find links to a comprehensive how-to for personal trainers, fitness instructors, Pilates and yoga teachers, as well as a shorter guide for those of us who have or are at risk of lymphedema after breast cancer.

    1. Carol, Thank you for your kind words. I’m glad you liked the post. I’m familiar with that content you mention as I shared the link on my NP FB page the other day. It’s very good. Thanks for sharing the link here.

  5. Although I have Primary Lymphedema of my lower extremities….I do know what you are going through.

    I highly recommend the website http://www.lymphedemapeople.com as a great resource as well as the ones you posted….Lymphedemapeople was created by those who do have Lymphedema. There is forum section. Also, Lymphedema People does have a Facebook group page as well.

    Hth

    1. Nessa, Thanks so much for sharing about Lymphedema People. I will check out the Facebook page. I hope you are able to manage your LE well enough so that it doesn’t affect your quality of life too much. It’s great you are sharing and taking an active role in talking with others about. Thank you for that.

  6. Nancy, thank you for such a thoughtful and easy to understand exploration of the confusion surrounding lymphedema. I developed it three weeks post op and found rampant ignorance, and outright hostility from my surgeon.

    I did find good treatment, after a search, and I’d like to encourage Alli to not accept a poorly fitting sleeve and a swollen hand. On stepupspeakout.org there is a link for how to find a qualified therapist.

    A few of us started the site to attempt to inform and educate about secondary lymphedema, and we find that we’ve evolved into advocates.

    The recent article by McLaughlin in the American College of Surgeons Journal that debunked lymphedema risk reductions as “myth” actually did no such thing: it was a single surgeon/single site study, that only followed women for one year, set the bar very high to “diagnose” lymphedema (there is no single standard”, and most the patients followed risk reductions and the conclusion of the study is that we need to try and figure out who is high risk, but the press releases said “Don’t worry about lymphedema and don’t bother with risk reduction behaviors”

    Tell that to a woman who recently contacted me who developed lymphedema after a non-compressed plane flight…And me, who was uninformed and during a period of high risk got sunburn and bug bites, and had no post op instructions, so I put too much stretch on my healing axilla.

    Nancy, 14 nodes=an axillary node dissection, the rule is >7 nodes. So the risk is there. The odds are always in your favor, but information is power and let informed women (and men) make informed decisions.

    Thank you for an excellent blog–there’s no shortage of confusion around lymphedema, or lack of knowledge.Blogs like yours go a long way toward fighting the ignorance.

    1. Judy, Thank you so much for your supportive words. It must have been difficult for you being diagnosed with LE and then on top of that facing ignorance and hostility, from your surgeon no less. That’s terrible and I’m sorry. I’m glad to hear you found good treatment. Thank you for your advocacy work and for being part of the team that started Step Up, Speak Out. It’s a wonderful resource. Thanks for raising some valid points about the one article. More confusion there, right? And thanks for clearing that up about the >7 nodes cut off. The risk is there, that’s the main thing to keep in the back of one’s mind. Thanks again for adding to this important discussion.

  7. Some women can develop LE even without lymph node dissection. Surgery, radiation or a combinaatin thereof can put us at risk. Many of us develop what is called axillary cording — bowstring tightness under the armpit that may spread from elbow through the armpit and down our tortorsos — which is a cousin to lymphedema. I have to watch for that, which I get from time to time, and be careful to prevent LE from forming. The Speak Out/Step Up site has info on cording as well. Kathi

    1. Kathi, Thank you for making the important point about radiation being a risk factor as well. I have heard about the axillary cording issue some patients develop – a cousin of lymphedema, and a nasty cousin, I might add. I noticed info on cording is included on The Step Up, Step Out site and that’s great. Thanks for adding another piece to this discussion, Kathi.

  8. I’m an australian physiotherapist and I have treated many women with bresat cancer. I noticed over the years that many women fear developing lymphoedema and worry about remembering how to reduce their risk. So whilst on maternity leave I have developed a smartphone App for breast cancer related lymph oedema. It teaches women what lymphoedema is, how to reduce risk and early warning signs. Beyond just providing info the App teaches users how to self measure their arm so they can monitor for early signs of swelling themselves. I would love some of you to check the app out and give me feedback. http://www.lymphoedemabreastcancerapp.com.au

  9. Nancy,

    I’ve had lymphedema, I believe a year out of treatment. I heard the same information as Kathi pointed out about radiation, etc. causing lymphedema too. My right hand swelled up so much, and I was in agony. I got the compression sleeve and glove.

    I treated myself tenderly at times, but nowadays, I’ve thrown caution to the wind. I fly without my sleeve and do everything without it. I’m not recommending this to anyone. Maybe subconsciously I don’t want to be reminded of breast cancer.

    I did get two types of physical therapy for lymphedema. They helped tremendously.

    Thank you for such an informative post on such an important topic.

    1. Beth, I agree that physical therapy can really be helpful. Personally, I feel a PT appointment/assessment should be part of breast cancer treatment too. There are so many things to become aware of and lymphedema risk is certainly one of them. I also strongly feel measurements should be taken to get a baseline before surgery. I wonder how often this is done. Thanks for sharing about your experience, Beth.

  10. Nancy, thanks so much for raising this issue again. How appropriate to do it during the month of March, which encompasses Lymphedema Awareness Day on March 6. As a lymphedema patient-advocate for the NLN and the Lymphedema Advocacy Group, I can attest that all of your tips are great.

    The issue of prevention is very confusing because standards have changed, including those regarding exercise. But the NLN has a handle on the latest, as does Step Up, Speak Out.

    I can’t believe the TSA questioned your lymphedema sleeve. I have flown with my sleeve many times, internationally as well as domestically, and never been asked about it.

    I hope you never get lymphedema. I have a mild case, but I know many advocates who must bandage every night and religiously wear their compression sleeves. Dealing with cancer is enough. Thanks for posting on this important, but little discussed, topic.

    1. Jan, I know you understand lymphedema very well. Thanks so much for sharing about your personal situation and thanks as well for all your advocacy work on behalf of those living with lymphedema or who are at risk for developing it. And thanks for writing that great guest post a while back!

  11. I felt insulted by the statement from the group of surgeons. It seems to downplay the significance of the issue and seems to indicate we’re anywhere near knowing who is “really” at risk. Short of something solid on this front, all we have is to be careful and engage in what they deem “mythical” rituals of protection. I’ll take their viewpoint with a grain of salt, since they are the group who could be viewed as “causing” these issues in the first place. I don’t see it like that, but one could make the argument. My guess is they’re tired of hearing it.

  12. In answer to the question of whether anyone ever mentioned LE, that is a resounding NO. When asked after I found an article on it, to a one, the oncological “team” denied even the possibility. However, when I asked a physical therapist about it, she gave me the lowdown, and I web-searched from there. I came away believing it is one of the best kept secrets…and a sad orphan no medical provider wants to pick up. Team members don’t seem to talk much to each other, different departments, yada yada yawn, and therefore there is no LE, and where it doesn’t exist, no risk exists. AMA pulls out the protective shields like every battle is a war. Sigh.

  13. Cancercare and my surgeon were wonderful, they were very upfront about everything that went with surgery, lymph node removal and radiation. Just in case they forgot to cover anything that I might have a question about, like maybe at midnight when there was no human around to answer my questions, they also provided me with a great deal of written information and a list of very informative websites I could go to. They also held group information sessions before and after surgery for anyone wishing to attend.

    1. Laura, How wonderful that you were informed and given resources, too. And groups sessions before and after surgery, that sounds like an excellent idea. I’ve never heard of that happening. The only class I was offered was one to prepare for chemo. Thank you for sharing.

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