Do you have lymphedema brought on by your breast cancer surgery, radiation therapy or other treatment, or do you worry you might yet develop it?
Do you wonder if you really need to wear that sleeve when you travel by air?
Do you worry about insect bites and cutting yourself when chopping your veggies?
Do you wonder if you should be staying out of hot tubs and saunas?
If you have lymphedema, were you informed about your risk before surgery and were baseline measurements taken?
Is your medical team following up with you in any way to monitor and manage potential risk you might still have?
If not, do you wonder why this isn’t happening?
So many questions!
Nearly ten years post-diagnosis and after multiple surgeries, I remain somewhat uncertain about what, if anything, I should still be doing to minimize my risk of developing lymphedema.
The mixed messages breast cancer patients get regarding the benefit of risk-reducing behaviors can be confusing and frustrating.
I’m thinking I am not alone. Hence, this post.
Lymphedema (LE) is a chronic condition caused by abnormal collection of lymphatic fluids which results in disfiguring swelling (but it isn’t just about swelling) in one or more parts of the body. If left untreated, it can escalate, even becoming deadly.
When a person is born with a genetic predisposition for developing LE, it’s known as primary lymphedema. Primary LE can present at birth or develop later on.
Breast cancer-related lymphedema (BCRL) is the most common form of lymphedema in the US, although other cancer treatments can cause it as well, as can any sort of surgery or other trauma that disrupts the lymphatic system.
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.
If you’ve been treated for breast cancer, you are at risk for lymphedema of the hand, arm, back, and chest or breast on the affected side. If your surgery was bilateral, then both sides are at risk. The risk remains for the rest of your life.
In this particular post, I want to focus specifically on confusion that persists surrounding LE risk-reducing behaviors.
If you have LE, you likely are quite familiar with and are following the recommended guidelines.
Some of the confusion comes from not making the distinction between a person trying to reduce risk and one who’s been diagnosed with BCRL.
To better understand your risk as a breast cancer patient, you might want to read, Lymphedema, What’s a Breast Cancer Patient’s Real Risk?
Breast surgeon, #BCSM co-moderator and online friend Dr. Deanna Attai, kindly agreed to answer a few questions about BCRL risk.
1. Do you inform your patients about LE risk prior to breast cancer surgery, and do all your patients have baseline measurements taken prior to surgery? If yes, do you advise that follow-up measurements be taken? If so, how often, for how long, and who should take the measurements and monitor for changes?
Discussion of lymphedema risk is normally held during the initial consultation (very brief, however, as we are covering a lot of material) as well as during the preoperative visit. In our practice, we try to have all patients seen in physical therapy prior to surgery for baseline measurements and education. Our lymphedema specialist also does a monthly free lecture that any patient can come to for a refresher.
Ideally, postoperative assessment measurements are done. Previously, I had an L-Dex® unit and was doing routine bioimpedance spectroscopy (BIS) at 3, 6, and then 12 month intervals. That is the most accurate way to measure, but it is not covered by all insurances.
Practices across the country vary from just asking about “any arm swelling, tightness, limitation in range of motion” to routine tape measurements, to use of BIS. Also, quite variable is which provider (surgeon, medical or radiation oncologist, survivorship clinic, other) does the assessment and measurement.
Because lymphedema can develop at any time, I ask patients at each follow-up visit if there are any issues with swelling, tightness or range of motion.
2. What specific questions about LE risk should breast cancer patients ask their breast surgeons before surgery (or after)?
Before surgery it’s a good idea to ask about the likelihood of LE developing – of course it depends on the anticipated procedure (sentinel node versus axillary dissection), whether or not radiation therapy will be used and patient factors such as obesity.
The fewer nodes removed the lower the risk, but LE can develop even with only one node removed. A discussion of precautions (not all are evidence-based) and best practices should be held before and after surgery and reinforced periodically.
Patients should also ask when they can get back to regular exercise, if specific stretching/range of motion/strengthening exercises are recommended after surgery and when to start them. And, of course, they should bring any changes or concerns to the attention of their medical team.
3. Do breast cancer patients need to worry about LE risk for the rest of their lives?
4. If you’ve had lymph nodes removed and/or have had radiation therapy but do not have LE, how do you determine if you need to follow the risk-reducing guidelines? e.g. Do we really need to wear a sleeve when traveling by air? Do we need to stay out of hot tubs and saunas? What about blood pressure readings and blood draws? Which guidelines are actually evidence based?
Anyone who has had axillary surgery and/or radiation should follow recommended guidelines to reduce risk, but there is a lot of confusion. Many of the old embedded practices (no blood pressure, blood draw, wear a sleeve when traveling, etc) do not have a lot of supportive evidence.
I usually recommend a “try to avoid” approach – use the unaffected arm if possible, but permit blood pressure and blood draw if needed. The old guidelines are so embedded and changing practice and attitudes is difficult.
I do not restrict physical activity and recommend that patients listen to their bodies (don’t do something that causes discomfort). Exercise is encouraged for many reasons. Many patients feel more comfortable wearing a sleeve when flying, and there is no harm to doing so.
Saunas are one of the few things that have been associated with increased LE risk.
5. If you suspect you have symptoms of LE, who do you go to first with your concerns? (PCP, oncologist, surgeon, other?)
It depends who you are seeing for your survivorship care. Often it’s the surgeon or radiation oncologist, but any medical provider, including PCP, should be able to do an assessment and refer to physical therapy for evaluation and treatment.
6. What are the greatest risk factors for a person to develop LE?
The biggest risk factor is having axillary surgery and/or radiation. Next is the number of lymph nodes removed. After that, obesity.
7. Why do you think so much confusion about LE continues?
While the likelihood of developing LE is relatively low for most patients, if it develops, you have it for life. It can be controlled, but constant attention (of varying degrees) is needed.
In addition, cause and effect is very difficult to get a handle on for LE, which is why (in my opinion) many of the old restrictions have persisted for so long.
8. Should every breast cancer patient have one consult with a person trained in LE, or is this overkill?
If available in your area, they can be very helpful for assessment and education. However, they are not available in every physical therapy department. At the very least, the surgeon and radiation oncologist (the 2 specialties with treatments that cause LE) should be educating the patients.
I’ve had the device in the past but had to stop offering it due to lack of uniform insurance coverage. It is certainly the ideal, but cost and availability are issues.
An advantage of BIS is that it can detect pre-clinical (before symptoms develop) LE, and so far the literature supports that management in this stage can prevent progression to clinically evident LE.
Also, what is not clear – which patients are best served by surgical techniques such as axillary reverse mapping, lympho-venous anastomosis, and lymph node transfer. These surgical techniques are not yet widely available (the latter 2 require microsurgical techniques, not a skill set of most breast surgeons) and timing (at time of axillary surgery or when LE develops). Indications (all patients, those with axillary dissection, etc) and other factors have not yet fully been settled.
Thank you, Dr. Attai, for your helpful input.
A Few Takeaways Regarding LE Risk-Reducing Behaviors:
1. If you have LE, yes, definitely follow the guidelines as closely as you can.
If you’ve been diagnosed with LE, it’s imperative to get help managing it and to stay on top of things. You want to prevent it from progressing, which it can and sometimes does.
If you are trying to lower your risk for developing LE, follow the guidelines. But, as Dr. Attai mentioned, not all the guidelines are evidence based. Again – confusion can result.
So, what does this mean for you (if trying to reduce risk)?
2. You need to self-advocate in this arena too.
All too often, the topic of LE won’t even ever be brought up if you don’t do it. Sad, but true.
Ultimately, you need to gather information and make informed decisions that are right for you. Ideally, get your questions addressed before any surgery or radiation therapy, but it’s never too late.
The following factors are important to know as they increase risk:
- The number of lymph nodes that were removed in your surgery.
- Understanding that BMI (body mass index) is a factor.
- Be aware that radiation therapy increases LE risk.
- Infection you experience in your arm, trunk or breast increases risk.
3. If you’re unsure what you should be doing or suspect you have symptoms of LE, speak with your doctor and ask to be seen by a LE specialist.
Seeing a physical therapist can be a good place to start (that’s what I did.) as LE specialists aren’t always available to you. However, it’s important to seek a PT who has had enough training in LE (many do not).
4. When trying to reduce LE risk, familiarize yourself with the risk-reducing guidelines and follow the ones you will realistically implement and follow.
After a consult with a professional trained in LE and based on YOUR situation/risk factors and comfort level, make informed decisions as to which guidelines to follow most closely. Personalized strategies, like usual, are best.
I had 14 lymph nodes removed, but have not been diagnosed with LE. I choose to wear a sleeve when I fly. I do not use saunas, but I never really liked them anyway. However, I do enjoy hot tubs now and then (I’m talking like three times a year), but when I do, I take care to get out after 10 or so minutes, and I try to keep my “bad” arm out of the water as much as I can.
In addition, I continue to work on getting my BMI down (always a struggle), try to be careful about cuts and insect bites (avoiding infection is really important) and try to keep my skin in good condition. I do exercise, and I do lift weights.
Even though some recommended risk-reducing behaviors are not necessarily supported by a ton of evidence, many are common sense precautions you might want to take. Or as Dr. Attai said, “a try to avoid” approach.
Bottom line regarding the hot tubs and saunas question, you need to carefully balance your risk factors against how badly you want to use those two things. But remember there is evidence saunas are a bad idea. I would recommend avoiding those.
The choices I’ve made are not necessarily the right ones for you.
You might want to read, Debunking Lymphedema Risk-Reduction Behaviors: Risky Conclusions by Judith Nudelman, MD., in which she concludes with the following:
Risk for lymphedema is multifactorial and women should be given accurate counsel and supported in their decisions. This need to debunk risk reduction does not relieve women of burdensome guidelines, but over simplifies, puts them in harm’s way, and denies their reality of their risk of lymphedema and prudent steps they can take to avoid this risk. Debunking prohibits truly informed decision making by patients and providers.
Sage words, I’d say.
5. Know the symptoms of LE.
There isn’t a diagnostic tool or even a uniform standard for diagnosis, so knowing the symptoms yourself is so important.
Some of these include: a heavy, tight, or tingling feeling in chest/arm/armpit area; swelling, numbness, pain, change in skin color or a general change in skin condition including rash, redness, itchiness, warmth; loss of flexibility in nearby joints or fever/flu-like symptoms.
When in doubt, get checked out.
6. Early detection of LE is super important.
As Dr. Attai mentioned in #1 above, Bioimpedance Spectroscopy (BSI test) is one assessment tool, and yet, cost and insurance are roadblocks. Sound familiar?
Still, this might be a good option to inquire about. But again, LE is not just about swelling or volume. Regardless, get the tape measurements before surgery so you have a baseline. Taking measurements post surgery is a good idea too.
Now, where are those guidelines I keep talking about?
One reputable resource to sift through is National Lymphatic Network. That’s where I go to find recommended guidelines. Read their position papers (guidelines) on various topics including: Healthy Habits & Lymphedema, Risk Reduction, Air Travel, Exercise, Diagnosis & Treatment, Screening & Early Detection, Training of Lymphedema Therapists.
For more resources, you might want to read, My Lymphedema Resource Round-Up.
If you find yourself in need of lymphedema treatment/management, it’s imperative to find a certified lymphedema therapist (CLT). Click on the image below for an excellent presentation by Judith Nudelman, MD (proud to call her a friend) on how to go about doing that. As a physician and person living with LE, she is very knowledgeable. Judith also happens to be a CLT and is the founder of Speak Up, Step Out, another excellent resource to learn about LE.
I hope this post has helped answer some of your questions and hopefully leaves you feeling a little less confused about LE and LE risk-reducing behaviors. If you have a question, ask it in the comments.
If you have lymphedema, you know very well the many challenges it brings, but remember, you’re not alone.
As Suzzann Cummings wrote in her excellent guest post, Living with Lymphedema, a while back:
Don’t be ashamed or embarrassed because you have lymphedema. It’s not your fault, and there is help available.
If you worry about developing LE, you’re not alone either.
As always, knowledge is power.
NOTE: Please remember this blog is NEVER a substitute for medical advice or treatment. If you have concerns about LE, speak with your care team.
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Do you have Lymphedema, or do you worry about developing it?
If applicable and if you do not have LE, which (if any) guidelines do you try to follow?
If applicable, were you informed about your risk of developing LE?