Lymphedema after Breast Cancer Treatment Caused by Heat

I was told to stay away from hot tubs, too hot baths & showers & saunas because of the high risk of lymphedema.

I don't. Mine started during winter and winters here are brutally cold. It started when I was about 1/2 way through 12 weekly Taxol. Summers here are quite hot and I have far less issues with LE during summer than in the winter. But we are each different and no 2 are exactly the same in what works for us individually.

It is belief that the temperate has nothing to do with it but rather my activity level. During the summer, I am outside a lot and get a lot of exercise. I now my yard (and several others to help out others) with my push mower, garden, care for and ride our horses, ride my bicycle, flyfish, boat, are a few of the things that keep me busy during summer. During winter I do care for the horses but it's too cold to spend much time outside. I do go to the Base Gym and work out several times a week but that doesn't come close to as much as I do during summer. I do keep busy during winter with fly tying and rod building, leather carving, flint knapping and carving WoodFellows (sewing and tatting too). My LET guy tells me to do any and everything I want to - so I do and love living every day and to the utmost I can.

I'm going way out on the limb and say that my LE was caused the removal of 7 lymph nodes and radiation that included my nodes. At least my RO admits he had a hand in this.

Oh, good. I'm always afraid my dry sense of humor will fall flat when delivered in text.

You are right, we beat ourselves up over things we do and so often the bad things would have happened anyway. Do we take credit for the good? Often not.

Lymphedema risks are created by lymph node removal. For many of us, after the node removal, we find that certain things can aggravate it, but the node removal is the root cause. I too was told to avoid saunas, steam rooms and hot tubs (all of which I loved😔). I mostly wrestle with mild lymphedema in the warm weather, but have had some issues in our cooler weather this year. Go figure!

ChiSandy,

Does your sleeve feel uncomfortable ? I am able to wear mine for long periods of time ( like a flight to New Zealand) with no discomfort. Could there be a fit problem? Have a wonderful trip!

Hi John:

You didn't provide any information about your friend, but in general, a procedure that disrupts lymph channels or removes lymph nodes introduces the risk of lymphedema. Sentinel node biopsy can increase the risk, and more extensive axillary procedures raise the risk significantly.

Once there is onset, your friend should seek a referral to a qualified lymphedema therapist for baseline evaluations, to learn about self-care, risk reduction steps, the proper fitting and use of garments, etc. Please share the website noted by MinusTwo above with your friend, which includes information about how to find a lymphedema therapist:

http://www.stepup-speakout.org/

As for what triggered it (presumably following some procedure that raised risk), a variety of insults thought to increase lymphatic load and potentially overwhelm the ability of the system to clear lymph have been identified. At this particular page, avoiding temperature extremes is one of the recommendations:

http://www.stepup-speakout.org/riskreduction_for_l...

"Avoid temperature extremes

• Extreme cold may cause rebound swelling that can overwhelm the lymph system.
• If an ice pack is needed, pad it with a towel and use it for no longer than 10 minutes at a time.
• Heat can draw lymph fluid to the affected areas and overwhelm the lymph system.
• Avoid water temperatures of more than 102 degrees in hot tubs, saunas, baths or showers.
• If moist heat is needed, moderate the temperature and use it for no longer than 10 minutes at a time.
• In warm climates, limit outdoor activities to the cooler morning hours."

So heat is certainly a possible trigger. However, lymphedema can come on without any identifiable event. At this point, identifying the possible trigger seems less important than seeking proper care to control and limit the condition, although your friend may wish to exercise caution with heat in future, in case of a particular sensitivity.

Some may have more or less lymphatic capacity than others, and may be affected less or more than others by similar exposures or activities. Anecdotally, I had bilateral sentinel node biopsies, and do not have clinically diagnosed lymphedema, but my arms and hands feel less comfortable in hot, humid weather or if overheated from too warm clothing.

BarredOwl

The key word in the thread title is "caused". Heat does not cause lymphedema, node removal,does. Heat is simply a factor that may create conditions for it to flare up

I agree that when breast cancer associated lymphedema develops [edit: in a person who had lymph nodes removed], lymph node removal is the main cause or central contributing factor. On the other hand, it seems possible that lymph node removal might not be the sole cause of lymphedema in all cases. That something is generally necessary for a condition to develop, does not mean that it is always sufficient for the condition to develop.

For example, the fact that lymphedema does not occur in many patients might suggest that, while (in most cases) lymph node removal is a necessary event, it may not be sufficient in every case to cause lymphedema. If something is necessary, but not sufficient for a condition, there might be other contributing causes or risk factors, at least in some cases. Perhaps in some patients, node removal is indeed sufficient to cause lymphedema (e.g., many nodes removed, insufficient remaining lymphatic capacity), and/or perhaps some patients have some additional pre-existing risk factors that may contribute, and/or perhaps some patients are exposed to some additional risk factor(s).

It may be hard to distinguish whether something has triggered sub-clinical lymphedema to become manifest or flare, or is an actual contributing cause.

Lymph node removal is recognized by some researchers as a "risk factor" (citations omitted):

http://jco.ascopubs.org/content/early/2015/12/07/J...

"Well-defined risk factors for developing lymphedema include axillary lymph node dissection (ALND), regional lymph node irradiation (RLNR), higher body mass index (BMI), and older age at diagnosis. It remains unclear why, among patients with similar demographic and treatment-related characteristics, some go on to develop lymphedema."

BarredOwl

susan3, I think you nailed the reality of LE risk. It does not follow any reliably predicable pattern, studies notwithstanding.

I'll build on something that barred owl pointed out: node removal is a significant contributing factor, but it does not fully explain LE incidence. The majority of women with nodes removed will not get LE, but the traits that distinguish those who eventually get it and those who do not are not well understood. Most of the precautions/risk avoidance behaviors probably have their roots in anecdotal evidence that people who have damaged lymphatic systems sometimes develop LE after burns, cuts, IVs, BPs, air flights...you name it--These are all 'incidents' that tend to prompt the body to generate additional lymph. Like barred owl, I have often wondered if these kinds of body-incursions are the tipping point that nudges sub-clinical LE into symptomatic LE, meaning they are not a 'cause.' You may have had a tipping point event when you developed LE after so many years, perhaps something that you did not notice or attribute with any particular importance. Several studies add chemo to the list of risk factors for LE.

When women report that they are able to do x, y, or z without getting LE, I think that means that either they are in the lucky group that's not going to get LE regardless, or they have been careful and cautious to adjust to say, exercise gradually. I also suspect that it means they have few of the generally recognized risk factors, such as being older and having a high BMI. I suspect that piling on the risk factors invites the tipping point. In all these observations I 'suspect,' because I don't really know, and neither do the researchers. Even the most recent study by Dr. Mei Fu followed patients for only 24 months, recording needle sticks, air flights, etc. to see who did or did not get LE. I think that study is promising, but it still does not begin to unravel the mystery of why some get LE and some do not, and the role that needle sticks, heat, sunburn, insect bites, flying, weightlifting, BPs, etc. may play in that risk picture.

Doxie, when you think that the smaller lymphatic vessels are teeny tiny and located just under the skin, it's easy to picture mayhem on them from radiation. I think that radiation causes scarring well below the surface, too. The table here is from a study-of-studies; the authors wanted to get their arms around LE risk from various BC treatments individually and in combination. The ranges you see here are quite wide, and the authors noted that the apples/oranges nature of LE studies means that varying diagnostic methods and criteria used, as well as huge differences in patient follow-up periods, generally make the studies' conclusions difficult to compare and contrast. Hence, the wide ranges of LE risk here. Even so, it does appear that radiation sure does add risk.

The numbers in parens refer to the numbered studies reviewed for the article.

BREAST CANCER-RELATED ARM LYMPHEDEMA: INCIDENCE RATES, DIAGNOSTIC TECHNIQUES, OPTIMAL MANAGEMENT AND RISK REDUCTION STRATEGIES, CHIRAG SHAH, M.D., AND FRANK A. VICINI, M.D., F.A.C.R.

(Sorry about the all-caps; I just did a copy/paste from the pdf of the article)

Thanks, Tomboy.

We women blame ourselves for too many things that we could not have controlled. I get tired reading this over and over. I do the "blame myself" thing, too. We are only in this forum because we had lymph node removal and, for some, radiation.

Still, this is about trying to prevent the occurrence or flaring of LE and for some this is still possible.

My wife's Lymphedema wasn't cause by heat, but she had an acute reaction and swelling of her left arm after using the No No Pro Hair Removal device. She used the device and the very next day her harm swelled up four times its normal size. Her doctor is convinced that the No No device caused her Lymphedema to worsen. Has anyone else had an adverse reaction after using this device?

I'm 42, my BMI is just above normal. I was actually in the normal range before finding the lump, but I've also been hovering at my current just above for at least a year, and have lost 30-ish pounds in the past 3 years. I was active up until my surgery, which was just over two weeks ago. I did not push exercise after surgery (lx with SNB), in part because I had a drain in the first week. I kept myself slow and easy, but the day after my drain was pulled, I noticed very uncomfortable swelling in the bad girl. Within a couple days, I noticed it in that arm was swollen as well (not to say it wasn't already there). Sure enough, my BS said it was LE and got me in a sleeve. So other than any unknown predispositions prior to surgery, it just took surgical removal of those nodes.

That being said, I do have a couple of questions?

1) I saw my MO two days prior to my surgeon. He examined me after I told him about the swelling, but he didn't say anything. He did know that I was seeing my BS soon. Is this something that my MO wouldn't really do anything about other than sending me to the BS?

2) My BS did not give me any information other than to wear the sleeve for exercise or if I was going to be doing a lot with that arm (my job has a pretty physical aspect to it, so she referred to that). Did anybody else initially just get fitted for a sleeve and not get sent to an LE specialist

I too fall into the 3-23% risk, and was warned about LE at my pre-op teaching session with my BS’ NP. She was the one who wrote me the Rx for compression--but also told me that with an SNB and Lx, my lifetime risk was 2% as opposed to >25% for Mx and/or ALND. Yes, I have a higher BMI, but one of my friends is petite and very slim--and she got both arm and breast LE. (And she had even fewer nodes out than I did). We were both in our 60s at diagnosis. Except for those who’d never been told and were blindsided by LE when it developed, I’d almost wonder if it were a self-fulfilling prophecy, Seeing as how more people suffer from LE than those with AIDS, MS, muscular dystrophy and Parkinson’s combined, and how many people I know seem to have it--a % higher than the stats & charts indicate, it’s the most common disease that nobody seems to know about.

I take hot (but not steaming) showers--102 degree water actually feels chilly coming out of a showerhead.

Has anyone tried acupuncture for LE? I see I am offered it but don't know if Medicare covers