Lymphedema question

newter

Hi all,

I know most of you know me as obsessing about my hair mostly but I also obsess about developing lymphedema. I am wondering what everyone does or does not do to avoid lymphedema.

Thanks,

Newter

SheriH

I really didn't do anything more than avoid that arm for bp and sticks until this summer. It's been over 2 and a half years since surgery and this summer my bad arm just started hurting. I went to a lymphedema therapist and she did all the measurements. The diameter was 2 inches larger than the other arm, which is really not that bad yet. She taught me some massage techniques and had me start wearing a compression sleeve. I don't wear it as often as I should, but what surprised me was how much better it made my arm feel. So, if I think I'm overusing my arm (it's my right and I'm right handed) or it's hurting I wear my sleeve for a day or two and it gets better.

It might not hurt to get an evaluation from a special lymphadema therapist to make sure there is no progression and start doing some massage. I kind of wish I would have done this sooner.

Poppy

I'm really not careful at all but I try not to overwork my arm and I wear my sleeve if I go into the mountains or fly. I also make sure I have bug spray on it if there are mosquitoes out. I've gotten cat scratches, moved furniture and done other stuff I shouldn't have and so far I've been lucky. I still worry though!
Hugs
Erica

iodine

It's not my dominate arm but I try not to carry the heaviest groceries, wear long leather gaulent gloves when I worked in my roses, always wear gloves when gardening, the usual with IV and BP, sunscreen.
-- Had massage and lymph drainage massage the first few months post op.
--Bought extra links for my watch and don't wear it to bed.
--Had wedding ring enlarged and don't wear it to bed or when I've had swelling in summer or after retaining fluid (extra salt intake, etc)
--wear sleeve on flights over 6 hours
--treat any scratches immediately with antibiotic cream and bandaids.
I've had a dear friend with very severe lympedema and seen how it affected her life on a daily basis. I do NOT want this and will do everything I can to prevent it.

Stack

are you more prone to get it if you have alot of lymph nodes taken. or doesnt that matter? i only had 5 taken, and i dont treat my arm any different than the other one. i do wonder sometimes if i should be more careful with it, but its been almost 2 years and i havent had a problem yet. for that im thankful. i dont do bp or iv in it though.

newter

Thank you ladies for the information. I have made an appointment with a specialist as a precautionary measure. They could not get me in until October. I worry that it will happen one day especially since it is my right arm and of course I am right-handed.

From what I understand, one node or 50 nodes removed put you at risk. I even think no nodes but having surgery in the general area can also put you at risk. I am sure Binney can clarify that if she sees this thread.

I too have burned my arm twice cooking, been scratched by my cat, and other normal every day things that would not matter to anyone else. I have been lucky but feel it is only a matter of time so I am trying to do as much as I can plus I am interested in what other people are doing and what is happening to them.

Thanks

Newter

OLBinNJ

You should wear a medic alert (www.medicalert.org) bracelet stating no BP,VP in arm. That's blood pressure and blood draws. You should also not carry a purse or anything else on that shoulder. See an LE specialist and be measured as a baseline. Learn self massage and learn to wrap and be fitted for a sleeve and glove for flying (all flights, not just long ones). Be carefull with exercise, no weights over 10 lbs, and watch out for aerobics where you swing your arms around a lot. It doesn't matter how many nodes were removed, even SNB can lead to LE. I developed mild LE @ 4 years post mast and keep it under control by wrapping at night and when I fly. Wrapping can actually reduce the swelling, while the sleeve/glove keep it from getting worse. I use the sleeve sometimes during the summer when heat/humidity gang up on me and make it worse. It's also a good idea to wear the sleeve/glove when exercising.

Binney4

Hmmm, my favorite subject (not!!!). Here's the web address for the National Lymphedema Network, where you'll find position papers on Risk Reduction, Exercise, Airline Travel, Treatment, and Therapist Training -- all important subjects for EVERY woman who has been treated for the dratted BC:

www.lymphnet.org

In November bc.org is offering an "Ask the Experts" discussion on lymphedema (LE) and exercise, their expert being a woman who is conducting large-scale research on bench-pressing post BC. Should be both encouraging and helpful!

Risk factors for LE include any trauma or surgery to the chest, but the risk rises somewhat with the number of nodes removed. Also diabetes, overweight (especially weight gained post-surgery), and whether the affected side is your dominant side. Other factors are still a mystery and may include genetic factors, previous or additional surgeries or trauma, or inflammatary responses. The risk remains for life and does not diminish much, in fact may be cumulative. The NLN estimates the occurence of arm LE among all women treated for BC to be between 25 and 35 percent, and recent studies indicate around 24 percent of women who do a lumpectomy with SNB will develop breast LE (though in both cases it may be misdiagnosed).

Sheri, you might want to check out the Position Papers on Treatment and Therapist Training at the NLN website above and consider more aggressive therapy by a well-qualified therapist. Like BC, lymphedema is staged, and untreated it will progress, slowly or rapidly, to stages that will be more difficult for you to handle.

All us "swell" sisters down below on the "Lymphedema Concerns" board would welcome any questions you might have and the opportunity to share our experiences with you, so please know you're welcome there.

Be well, all of you!
Binney

SheriH

Thanks, Binney! I also wanted to add that when I do wear my sleeve (which isn't as often as I should) I get a lot of unwanted attention. People are always thinking something bad happened and then I have to explain lymphedema. Not many really know what it is, so then it reminds everyone that oh, yeah, you had cancer. I forgot. That may be one reason I avoid my sleeve as much as possible. I will say again, though, that it really does help.

iodine

Sheri, you may be doing the world a lot of good by ans. those quesions.
I was amazed when I began working out after dx. that the trainers had absolutely NO idea what LE was!
I had to make a big stink to have a class for them. And this facility is a Wellness Complex associated to the local HOSPITAL! It is staffed with a dietitian, nurse, cardiac staff and all sorts of medical stuff.
I was just amazed.

SheriH

Dotti, I will say the when I go to explain the lymphedema,the teacher in me comes out. People probably get more than they bargained for! They get a whole lesson on the lymphatic system. Sometimes I do it to actually play down the bc part. I have a bunch of new students this year who weren't there when I had my surgery and treatments, so they really didn't know about it. I have tried to make sure the people at my school know I am fully capable of doing my job and not still in active treatment. I guess that's why wearing my sleeve in public makes me uncomfortable.

althea

I do a self massage that I learned from reading Deepak Chopra books. It's an ancient Indian practice that has a name I can't remember. It requires sesame oil, preferably cold pressed. It suggests starting with your head, but I start with my surgery scars. Then you basically rub yourself down from head to toe with oil. It might sound time consuming, but it doesn't need to be. If I need to make some tracks, I can do this routine and be done with my bath in 15 minutes. When I'm not rushed, 30 minutes for the routine and my bath is the norm. I really like this routine. I call my cadillac in my self care regimen.

Binney4

Sheri, I hear you on not wanting to wear the stupid sleeve and glove. For me it's not just that I don't want others to be reminded of my bc journey -- I don't want ME to be reminded of it either. And not only do other people (even strangers) get real nosy, but when you try to answer them their eyes glaze over. Nobody's the least bit interested in the lymph system (unfortunately, as others have noted here, not even our health-care providers ). Just wanted you to know there are a couple of garment makers who make them in a wide variety of colors, and those can help a bit to ease the discouragement of always wearing "medical"-colored garments. (One company will even make them with a contrasting color of stitches, so you can sport your favorite team colors if you want!) Let me know if you'd like information about what's out there.

(((Hugs))),
Binney

bbono

Does anyone know what the percentage is of women developing LE after Lumpectomy and Radiation? I have been very recently diagnosed with High Grade DCIS and now am being overwhelmed with decisions. My doctor has suggested Lumpectomy w/radiation and SNB but would only take 2 nodes. I am concerned about LE and considering not having the SNB.

Binney4

Hi, bbono, and welcome to the bc.org discussion boards!

I'm so sorry about all the crummy decisions you're forced to make! I just want to encourage you that, while LE is difficult, it's definitely treatable and extremely unlikely to be life-threatening, which can't be said for breast cancer, for sure. So do please keep uppermost in your mind that whatever you can do to defeat the bc beast has got to be right at the top of your priorities!

That said, there's a lot of recent research indicating LE rates following lumpectomy with SNB. About 7% with surgery alone, as much as 23% with radiation (which is standard). That's for arm LE. The rate of breast LE is also about 23% after one year (and of course the risk exists for life), as opposed to about 48% following axillary lymph node dissection.

One thing it might help you to know is that even without the SNB, the lumpectomy alone will put you at risk for both arm and breast LE and the radiation will add to that risk, so the risk may not be much reduced by skipping the SNB. (Women can develop LE from breast augmentation or reduction, or from any chest trauma as in an auto accident, with no nodes removed. Football players are also subject to LE from chest trauma.)

Okay, so that's the bad news. The good news is that there are a lot of simple steps you can take to be sure you're not among those statistics, none of which involve shirking on any bc treatment. See the Position Papers on Risk Reduction, Air Travel, and Exercise at the National Lymphedema Network www.lymphnet.org. I wish you peace with your decisions, both now and on into your long and healthy future!

Be well! 

Binney