Hot tub/ sauna -lymph nodes

Midwest Alice · 01-17-2009, 07:36 AM

Hi Everyone, Have a Wonderful Saturday!!

My question today is:

I trust my PT but I hope she is wrong about this one. She said I could never get in a hot tub again because I had 14 lymph nodes removed and it would cause swelling.

Is she right?

I am going to rejoin my old gym and they have great hot sauna that is very relaxing.

Becky · 01-17-2009, 07:40 AM

It can cause lymphedema (swelling) that would never go away. Of course it may not happen to you but if it does, you have to use a sleave for life. Go onto the Lymphedema Network website for advice and information and then do your homework.

Saunas and hottubs can be a cause of this side effect of lymph node biopsy.

Margerie · 01-17-2009, 08:31 AM

Maybe you can wear a sleeve in the hot tub.

I don't go in ours too often, but we only heat it to 100. I keep my left arm out of the water by resting it on the deck. Do the same thing for the occasional hot bath.

BonnieR · 01-17-2009, 08:51 AM

In my research I have found it advisable to avoid hot tubs or any extreme heat. Even very hot or humid weather. And I live in the desert! I don't think wearing a sleeve would protect your lymph system from the temperature. But, as Becky suggested, check out some lymphedema websites and let us know what you find out. Because there is a wonderful spa here that uses natural hot springs I would love to be able to use again. But I think those days are behind me.

Midwest Alice · 01-17-2009, 09:18 AM

Thanks, Awesome is the way I describe my Her2 support group!

I will do some research tonight and report back on what I learn.

Blessings,

Your friend,

alicem · 01-17-2009, 09:49 AM

I found the following websites that give good information on lymphedema . . .

http://www.lymphnotes.com/article.php/id/301/

http://www.lymphnet.org/lymphedemaFA...kReduction.htm

http://www.lymphnet.org/pdfDocs/nlnexercise.pdf

Hope they help.

Sheila · 01-17-2009, 10:53 AM

You also need to be concerned if you have any heart issues or elevated blood pressure....I quit using our hot tub after diagnosis....didnt want any problems...we gave it away to "younger people" who could enjoy it! I have to admit, it was best in the winter with snow falling on you!

Debbie L. · 01-17-2009, 11:01 AM

Hi Alice,

Good question. There is not a lot of evidence-based research on lymphedema. Historically, lymphedema did not get much attention or recognition, especially in this country. That is changing but like everything - change is gradual. Long before the medical world was paying attention, the NLN (national lymphedema network - lymphnet.org) WAS paying attention and they did amazing work to support those with lymphedema and to push for research. I recognize and appreciate what they did.

However. In an attempt to educate, they published advice and information about lymphedema that was largely anecdotal and not always true. Or more accurately, not always proven with good evidence to be true. Some of those edicts remain, because we (the big societal "we") do love to think that we have answers. Some remain because therapists cling to what they were taught many years ago and they, too, love to think that they have answers. Some of the edicts-without-evidence probably WILL be proven to be accurate. Some will be proven inaccurate.

To further muddy the waters, each arm is different. What reallly sets off my lymphedema may not bother yours at all, and vice versa.

So far, for example, two of the traditional "triggers" of lymphedema - repetitive motion and airplane travel, are not holding up to scrutiny. Studies done on dragon boaters (there's no motion more repetitive than rowing) are showing no increase in lymphedema. Studies on careful resistance exercise are showing a decrease or improvement in lymphedema. Regarding plane travel - the few studies that exist are not showing much. Problems after plane travel may be more related to lack of movement and perhaps unaccustomed lifting, if anything.

I'm taking a long time to answer your question. I'm going to give you the advice that I think makes the best sense for anyone who is concerned about any activity or occurrence that could affect lymphedema. First, if you already have lymphedema, you need to be even more cautious than those simply at risk for it. But the same basic advice applies to all of us who have had lymph nodes removed.

1. If you have not previously done so, schedule a visit with a certified lymphedema therapist for a baseline assessment and a demonstration of proper technique for the gentle massage to stimulate lymph flow. You should also receive basic education at this visit, and learn some exercises to stimulate lymph flow.

2. Armed with above information and course of action, approach anything new that might be a lymphedema trigger with caution. Do not automatically BAN the activity. But start it very slowly (in this case, perhaps a few minutes in the hot tub, with arm not immersed). Pay close attention afterwards, and do a small drill of exercise and massage to stimulate lymph flow. If you notice that your arm seems affected (tightness, burning, heaviness - it does not have to be outright swelling), increase your level of alert and repeat the exercise/massage drill. If it does not settle down quickly, it's back to the therapist and probably taking that that activity off your list. But most of the time, you'll find that you're able to try it again and do a little more the next time. And the next time. Etc. Trouble comes when the first time, you go all out. Or when after the first mild symptoms, you ignore them and let them worsen before seeking help.

3. If you are overweight, be more cautious - you are at a higher risk of developing lymphedma. If you can lose weight, you will reduce your risk of lymphedema.

4. Over time, you will learn what works for you and your arm, and what doesn't. You will learn which bits of the massage drill and which exercises are of the most help to your arm when you've overdone it. These details will be different for each of us.

At diagnosis, I was inordinately concerned about developing lymphedema. I did develop mild lymphedema. I had a great therapist who had no edicts. She told me the things that might be triggers and gave me the above advice - start anything new slowly and paying close attention. Advance time and/or effort cautiously, paying close attention. But she didn't tell me there was anything the couldn't be tried.

Over the years, I've become closely in tune with my arm's issues. I know what works when it is annoyed, and I usually can predict what will annoy it. I paddle my whitewater kayak and I skate ski - two fairly strenuous and repetive arm motions. Afterwards, I have little drill of massage and stretching. The more I use the arm, and the stronger it becomes, the less it complains after activity, but it always complains a little. One of the worst things for my arm is actually at the other end of the spectrum - things like sitting in a formal meeting or conference for hours, where I can't move the arm about without being disruptive. That lack of motion does it every time. I've learned little tricks like discreetly reaching up and behind my back, appearing to scratch my back or grab a sweater sleeve (less disruptive than waving the hand above the head, which is what works the best). For my arm, a simple twisting/wringing motion helps a lot, if I remember to do it. That's pretty discreet. Now, I don't even have to consiously remember to keep the arm moving - it's an autopilot function. But early on, I'd be hours into a meeting when I'd realize there was swelling, and then of course it's harder to get it under control.

This is probably FAR more than you wanted to hear. I get carried away on this subject. Lymphedema was one of my weird fears (obsessions?) at diagnosis. I even took a course to become certified as a therapist, a few years after diagnosis but it turned out that although RNs can be certified, they cannot bill for their services, a crazy catch-22 imho, and I rarely got to practice my skills. That was in 2003 and I don't feel current anymore, although if they changed the reimbursement rules, I'd consider repeating the training. See, there I go, rambling again.

Debbie Laxague

StephN · 01-17-2009, 01:45 PM

Hi -
Debbie gives some good advice about moderation and trying things slowly. We have enough problems without getting a full blown case of lymphedema.

Having 18 nodes removed I was careful to go easy on the lifting and make sure I had my range of motion back before starting a program of strengthening with light hand weights.

Knowing several BC survivor friends who did become afflicted with lymphedema, I was scared about that. It seems that some type of injury was what first set off their swelling. Such as a fall, banging the arm or shoulder or car accident.

About 3-4 years ago I did develop some moderate swelling in my surgery side hand/wrist and went for consult and treatment. Had to wear a compression glove with foam strips for extra pressure. Then my therapist got training in Kineseo tape. That was a good alternative to me and I ditched the glove.

There has been no swelling to speak of for over a year and I no longer use those devices or need to massage for drainage. Guess it was "easy come, easy go" in my case.

As for hot tubs or hot pools, I will use them on occasion, but tend to keep my hand above the surface.

Sherryg683 · 01-17-2009, 06:39 PM

OOps..that was something I wasn't aware of. I don't get in hot tubs too often but I have gone in saunas and hottubs since my surgery. I had 13+ positive lymph nodes. I did have some very mild swelling early in my arm and wrist but I think it was because I play tennis and abused my arm way too much in the beginning. I bought a compression sleeve and wear it when I play and haven't had too much problems with it. I was really thinking about getting a hot tub put in our back yard but I guess I need to reconsider it..sherryg683

Margerie · 01-17-2009, 09:20 PM

Considering Debbie's post, which trails along with my basic thinking on the subject........Is it just me, or is anyone else upset by the fact that mostly we are told that we CAN'T EVER: go in a hot tub, fly with out a compression sleeve, pick up anything heavy or carry a heavy shoulder bag with affected arm, garden without gloves, get a sunburn on our arm, get a mosquito bite on our arm, overuse our arm all in addition to never getting blood drawn, blood pressure or ivs in affected arm when it seems that this mostly speculation and not based on any true science?

Not many concerns for our quality of life????? We should be happy that we survived??? Are we stuck with old wives tales that may have some truth, but maybe fiction?

Sorry, I would blame my rant on my hormones, if I had any LOL!

StephN · 01-17-2009, 10:12 PM

Marjorie - WE know we are writing new "cancer laws" about a lot of things. Though it is good to use some sense, it is best not to throw caution completely to the wind! As Debbie says, just do what you find works for you as the "hard science" on this subject is lacking.

Hey - I garden without gloves quite often! Get stuck by rose thorns when pruning and scratched by my raspberry bushes, as I don't pick wearing gloves!

Guess I have the old "can't never could" phrase stuck between my ears and prefer to carry on as best I can.

Only time will tell.

Bill · 01-17-2009, 11:13 PM

Amen, Margerie! Alice, I have no advice regarding lymphedema, but it seems like you've gotten some good advice from your sisters here. My take- if you really enjoy something, and still want to do it, take precautions and do it in moderation, and follow the before and after advice of the ladies here. Remember, it was doctors and scientists who declared that it was physically impossible for a human being to run a 4 minute mile, but Roger Bannister did it. I guess he didn't listen to his doctor. Neeedless to say, always consult your docs., but do your own homework, too, just like you are now. To give up something you enjoy because of possibly unfounded fears would be a shame. I'm just an idiot talking here, so don't jump in the hot tub yet, just keep researching and thinking.

Becky · 01-18-2009, 09:09 AM

Debbie's post was excellent. When I responded to Alice, I was just answering the question - yes, hot tubs and saunas can be a problem for some women. But Debbie really spent the time on it.

I used to fly with a compression sleave and I would never take my stuff out of the over head bin with my affected arm. Then I had to go on a business trip to Mexico City and I forgot the sleave. After 5 1/2 hrs there and back - nothing happened. I always really try to move that arm in flight (with and without the sleave) so now, I don't wear a sleave but I don't use my affected arm to get my stuff out of the over head bin or use it to carry heavy stuff after a flight (because 2 whammies might cause a problem). However, I do use the arm otherwise (vaccuming, gardening, and I work out with hand weights - up to 5 lbs on each hand).

I don't have access to a hot tub or sauna. I think the one thing everyone should be concerned with is injury - especially wounds/cuts etc where infection can be a major culprit. That is also the premise on IV/injections too - the potential for the introduction of bacteria should be avoided (I think at all costs). I always have antibacterial wipes, Neosporin To Go and bandaides just in case I cut myself. So, I think with Hot tubs, it is the chance that the establishment may not put enough chlorine in that could be a problem whereas at a home hot tub, one could take charge of that potential problem.

SoCalGal · 01-18-2009, 09:24 AM

Many woman in my group were also "Obsessed" with lymphadema. It was such a HOT hot topic back then in the stone ages. 1996. LOL. I had 20 neg nodes removed - sentinel node was in clinical trial at Kaiser but my doctor felt the traditional way was the best way. 12 years ago I had some swelling in the breast following radiation but consulted with Dr Emily Ikers in Santa Monica who put it all in perspective for me (taught me some manual lymph drainage to do in the shower each morning-1 minute daily and that resolved the breast-adema.)
LONG story ending - I never wore a sleeve or paid special attention to my arm other than to always clean any cuts and cover with neosporin and a bandade. I take baths often. Hot tub on occasion and until this post didn't even know it was risky. But for me every day that my eyes open is risky

. Debbie's advice was good. Pay attention to your body when it's whispering to you - don't make it yell. Happy tubbing.
Flori

Del · 01-18-2009, 02:58 PM

Just after diagnosis almost 2 years ago, I asked my oncologist if it was okay to take regular saunas (since I was on chemo, and didn't want it to flush it out of my system too quickly, etc.). She was fine with it, and didn't even bring up anything about lymphedema. She has never cautioned me in regards to hot tubs or saunas. I only had 9 nodes removed, and have never had any problems with lymphedema, but I've occasionally been in hot tubs, and have taken twice-weekly saunas, with no problems whatsoever. However, I realize everyone's body is different, and I will bring up this question at my next appointment.

swimangel72 · 01-19-2009, 08:04 AM

My oncologist had NO information at all that was helpful for my lymphedema - but fortunately he did give me a referral to a fantastic lymphedema therapist. She was very thorough and up-to-date with everything. I only had 2 lymph nodes removed with the SNB but 5 were removed in the breast area during my mastectomy. I developed painful cording and very very slight swelling in my right arm which she treated. I regained full range-of-motion but she did fit me for a sleeve and gauntlet which she told me to wear when flying. When I asked her about swimming, she did a lot of research then told me that swimming was excellent exercise for lymphedema patients (the pressure of the water against the skin helps move lymph fluid) but she said NO hot tubs. I was disappointed because we had a hot tub, but in the meantime, the pumps started leaking so I gave it away (too expensive to repair - and it needed a new cover which would have cost $450.) Still I miss the hot tub, especially on beautiful snowy cold clear nights we've been experiencing this past week!

tricia keegan · 01-19-2009, 11:30 AM

My friend in Australia developed lyphedema in her hand from sitting in her hot tub. She said although she kept her affected arm out it's the body temp which causes the harm.
I think it's something that may or may not happen but not sure I'd want to take a chance.

AlaskaAngel · 01-19-2009, 12:59 PM

We have a furo (a more vertical hot tub) as part of the shower area we built into the house. I had just the sentinel node removed. Even 7 years out I am cautious about using the furo.

I still don't use that arm for heavy things or lifting much. About every two months the arm acts up and is painful clear down to the fingertips of 2 fingers and there is no position of comfort that I can find. It feels like the circulation is partly shut off. This weekend it was like that again. There is nothing I know of that brings it on in particular. Since lymphedema can happen years afterward, I do find it pretty spooky every time.

AlaskaAngel

caya · 01-19-2009, 03:53 PM

This is a great thread. I do not have lymphedema. I had 16 nodes removed, regained full range of motion by very religiously doing the arm exercises - I never thought about this hot tub/sauna issue. What about my whirlpool bathtub? I have used it since my MRM in Dec. 2006, but I don't sit in it for a long time.

I am still reticent to life weights, although I would like to try it. My exercise is mostly walking, aerobic exercises, and some swimming in the summer.

I have worn a sleeve while flying - that I had fitted by a professional fitter. I think if you get 5 different oncs/breast surgeons, you will get 5 different opinions on this.

That is why I love this site - it's information city here.

all the best
caya