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Lymphedema, sorting through the confusion – 7 tips to help

Lymphedema, sorting through the confusion – 7 tips to help

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 about preventative measures a patient should adopt as part of her/his lifestyle. Things are improving, but confusion persists.

Why is there so much confusion?

After my bilateral mastectomy, I 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. Admittedly, before breast cancer I don’t think I had even heard of this condition.

I didn’t learn about lymphedema until 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 I needed 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 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. And diagnosing it early is important; so, this creates a dilemma. 

I was directed to be mindful of the potential risk of developing lymphedema and advised to take precautionary measures.

Measurements were taken so I would have a baseline (better late than never) and could be monitored from that point 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.

Below are some things I’m doing and not doing:

I wear a sleeve whenever 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…

Sometimes, 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.

Generally, I don’t wear one when gardening, raking or shoveling snow, but often wonder if I should.

I don’t 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’ve resumed lifting weights, although it’s 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 avoid having my left arm in a hot tub, and I have yet to go into a sauna because I’m afraid to.

You might want to read, Lymphedema Risk, Are Hot Tubs & Saunas Bad Ideas?

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 recently updated position statements from the National Lymphedema Network here.

Again, 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.

The following tips might help in sorting through the confusion; however, 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.

Sorting through the confusion about lymphedema can be challenging. Becoming a well-informed patient and self-advocate regarding lymphedema is up to you.

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

Lymphedema, What’s a Breast Cancer Patient’s Real Risk?

Why is lymphedema still such a mystery?

Do you have lymphedema? 

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

Do you feel confused about lymphedema?

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#Lymphedema, 7 Tips to Help Sort Out the Confusion #LE #breastcancer



Barbara Harris

Sunday 28th of March 2021

I have commented on this before -- my P.T. after radiation recommended a bra insert (inside a compression bra or a regular stretchy bra) which has ridges and kind of "massages" the tissues to direct fluid through and onwards. Of course, I was also shown how to effectively do self- massage -- but I never do it. And during 2020, I've hardly worn a bra. . .But this is an easy thing to perhaps prevent lymphedema.


Wednesday 24th of March 2021

I didn't know about the recommendation to be measured prior to surgery. Hubby asked the therapist is my lymphed arm would ever be normal and she said that most women don't get measured and that you cannot really compare your well arm to your lymphed arm ... but that's what most people do. I'm not close and was told I probably never will be. Sigh.


Thursday 25th of March 2021

Linda, I didn't know about the recommendation either. I wish I had known to get measurements before surgery. I don't have LE, as far as I know anyway. But my left arm has always felt wonky post bilateral. Mostly, I've gotten used to that. I still am not entirely sure what I should be doing to lower my risk. Guess I'll keep wearing the sleeve when I fly and continue to be careful and aware. I'm sorry you have to deal with LE too. Like you needed one more thing! Thank you for sharing.

Laura T.

Wednesday 15th of March 2017

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.


Wednesday 15th of March 2017

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.


Wednesday 15th of March 2017

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.


Wednesday 15th of March 2017

Maggie, It wasn't discussed with me either. And at the time, I had not heard of it, so didn't know to ask about it. Sigh...


Sunday 31st of March 2013

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.


Monday 1st of April 2013

Lopsided Blogger, Thanks so much for adding your insights here. They gave me more to ponder about...

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