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

Lymphedema, what’s a breast cancer patient’s real risk?

March is Lymphedema Awareness Month and more and more people are becoming aware of this life-altering condition which affects up to 10 million Americans and hundreds of millions worldwide.

Lymphedema is finally out of the closet. However, it’s also true that lymphedema is still often misunderstood and far too often under-discussed, or not addressed at all when a woman (or man) is diagnosed with breast cancer and facing treatment which might cause lymphedema or elevate her/his risk to develop it sometime down the road. 

It’s important to note that lymphedema can occur following treatment for other types of cancer, not just breast cancer. Any time the lymphatic system is impacted by the cancer itself or cancer treatment, there is risk. Therefore, lymphedema can impact lower extremities and other areas of the body as well.

For obvious reasons, this post primarily focuses on risk for breast cancer patients.

After your cancer diagnosis, the primary focus for you and those taking care of you is about addressing your cancer, as it should be. But this doesn’t mean the topic of lymphedema should be ignored either. Far too often it’s never even mentioned.

I recall being told I should no longer have blood drawn from my “bad” arm, nor should I have blood pressure readings taken on that side. However, no one mentioned to me why this was, and I didn’t think to ask. Admittedly, before my cancer diagnosis, I had never heard of lymphedema, so how could I ask about something I knew nothing about?

You might want to read, Lymphedema, 7 Tips to Help Sort Through the Confusion

I learned about lymphedema at a support group meeting when a woman who had it shared about her experience. This particular woman had had a radical mastectomy 30+ years ago and her lymphedema developed about 18 years after that. Lymphedema more commonly occurs in the first three years following initial treatment, but obviously, can occur many years later.

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So what is lymphedema?

Lymphedema develops when the lymphatic system is unable to remove lymph, a clear fluid that circulates through the body removing waste, bacteria and other substances from body tissues.

This impairment develops when the lymphatic system has been damaged by surgery (not necessarily involving cancer), radiation or other causes such as infection and fluid gets left behind accumulating in tissues, eventually causing damage and swelling.

Sometimes there is a sensation of tightness, heaviness, numbness or pain. These symptoms can exist before swelling happens, as well as after. This is known as secondary lymphedema.

When a person is born with a lymphatic system genetically predisposed to fail, this is known as primary lymphedema. This “failure” can present at birth or later on as well.

Debate continues as to how much risk a breast cancer patient actually faces and whether or not risk reduction practices are even necessary. This only adds to the confusion surrounding lymphedema.

Speak Up, Speak Out states on its website:

As there is no gold standard for diagnosis, the criteria will vary and that adds to the confusion about how many people will develop it.

Yes, lymphedema can be confusing, tricky to diagnosis and treat, unpredictable and once diagnosed, incurable.

Once you have it, you learn how to manage it, but it won’t be cured, based on what we know today anyway.

All the more reason to bring it up before, during and after cancer treatment, is it not?

So, what is the real risk for the “typical” breast cancer patient? 

Anyone who’s had surgery (or other treatment) affecting the lymphatic system faces risk of developing lymphedema. About 20 percent of breast cancer patients who undergo axillary lymph node dissection (ALND), a procedure in which 10-20 (or more) lymph nodes are removed from the armpit and tested for cancer, will develop lymphedema. It also shows up in about 5 percent of  patients undergoing the less-invasive sentinel node biopsy (SLNB).

But again, what’s the “typical” breast cancer patient’s real risk?

There’s no real answer because as is stated on the National Cancer Institute’s site:

There is no consistency in the data on the incidence and prevalence of lymphedema after breast cancer, probably because of differences in diagnosis, the different characteristics of the patients studied, and inadequate follow-up to capture delayed development of the disorder. The overall incidence of arm lymphedema can range from 8%-56% at 2 years post surgery.

It’s hard to determine, which only adds to the confusion, right?

More research is definitely needed regarding all things lymphedema related.

So what should a breast cancer patient do to better understand her/his lymphedema risk?

1.  Get copies of your medical/surgical reports and and learn what they mean as best you can.

Ask question until you’re satisfied with the answers. For example, it’s imperative to know if nodes were removed (and how many) during your surgery.

2.  Ask your doctor(s) about your lymphedema risk.

Don’t settle for the, don’t worry about it ’til it happens, answer. And yes, sometimes they still say this. Discuss what risk reducing measures seem reasonable for you to take. As always, eating a healthy diet, maintaining a healthy weight and committing to exercise (start slowly and get help if in doubt) are important things to try to do to reduce risk.

3.  Learn the symptoms of lymphedema.

Some of them are:  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.

4.  Educate yourself by visiting reputable sites.

Good places to start are:  Lymphatic Education & Research NetworkStep Up, Speak Out; National Lymphedema Network, BreastCancer.Org  and Lymph Notes.

5.  Ask to have your limb measurements taken before treatments such as surgery or radiation begin.

Having a baseline might come in handy down the road. This should be part of every breast cancer patient’s preliminary, before-treatment-gets-rolling exam IMO. It certainly can’t hurt to ask for this.

Yes, lymphedema is scary and one more thing to worry about following a cancer diagnosis. But as always, becoming informed empowers you, enabling you to be your own best advocate when it comes to lymphedema too.

After all, it’s your body. It’s your life.

Was your LE risk discussed at diagnosis, or at any time for that matter?

Did you have baseline limb measurements taken and recorded before treatment began?

What’s your favorite LE resource?

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#Lymphedema, What's a #BreastCancer Patient's Real Risk? #LE #womenshealth #cancer #radiation

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Linda

Wednesday 10th of March 2021

No one even mentioned removing Lymph nodes so I was surprised when I got a report following my second lumpectomy that they had removed 16 nodes and 9 were cancerous. I was so out of it I didn't think to ask "Should there be more chemo or treatment?" because I assumed that cancer was still flowing through my body. They told me that I was 'past the time" to get lymphedema when my hand first swelled in 2018. Now here I am in 2021 and have Stage 2 lymphedema and have to wear compression garments 24/7. Thanks, Cancer.

Sondra Bennett

Wednesday 6th of April 2016

On additional comment for all. I do see a Lymphedema PT and, while the sessions are paid for by insurance, the supplies are not covered. The wraps and arm coverings are very costly.

Nancy

Thursday 7th of April 2016

Sondra, Thank you for the additional comment. This is why the passage of the LE Treatment Act is so important.

Sondra Bennett

Wednesday 6th of April 2016

Hi everyone! I am a 35 year break cancer survivor. I did not get lymphedema until two years ago when I was getting a massage and the therapist noticed how large my left arm was. My oncologist said I was the first patient in 28 years he has been in practice to have this so late. My point is that lymphedema is a life time risk after breast cancer surgery., I was diagnosed at a time when everything (34 nodes removed from right armpit and almost as many from the left arm pit). Just be vigilant at all times.

Nancy

Thursday 7th of April 2016

Sondra, Thank you so much for sharing about your experience. You're so right. LE can happen many years later. Being vigilant is important. As is information. Thank you for sharing.

Beth L. Gainer

Friday 1st of April 2016

Hi Nancy,

My surgeon didn't talk about lymphedema at all. I didn't even know to ask! He did say, no needles or blood pressure in my right arm, but he didn't say why, and I was so overwhelmed by diagnosis and cancer, I didn't even ask. So guess what happens when I'm wheeled from Recovery to my hospital room? A medical person (was too groggy to figure who it was) slaps a blood pressure cuff on my right arm and starts pumping. I raised a fuss and kept saying, "Not my right arm," and she has the nerve to say, "What did you have done?" Then she looks at the chart and immediately does the BP on the left arm.

Anyway, I learned what lymphedema was when within the first year after my axillary node dissection and radiation. I was opening doors with my right hand, and my hand and arm swelled up unbelievably! Then I had to have PT and that's when I became educated, as I had to take a lymphedema class first. I wonder, why didn't I have to attend the class before the surgery? I was going through the process blind.

Thanks for a terrific post on an important topic.

Nancy

Saturday 2nd of April 2016

Beth, Sounds like your experience was similar to mine. No one ever mentioned the reason to me either for not doing the needles and blood pressure readings on my most-affected arm. It must have been frightening for you to experience that sudden flareup. Too bad there's not better education all the way around regarding this important topic. Thank you for sharing about your experience.

Maggie

Wednesday 23rd of March 2016

As others have noted, I too was told that with Sentinel Node removal there was no danger of LE; now I wonder, but practice diligent care to avoid it if possible. Is there any indication if surgery versus radiation causes it, or something else? Are surgeons so arrogant that they believe "their work" will not produce LE? Some ladies I've spoken with had LE emerge years after any surgery-radiation-chemo...what's that about? I'm trying to arm myself (no pun intended) with as much information as possible to avoid LE, but crazy does live on my block some days! Does anyone else live with the fear of LE emergence?