lymphedema after snb
The initial post for this thread is below... However, this thread has taken on a new life...one related to the importance of raising the flag on LE...raising awareness within the medical community and among bc survivors. This thread also has within it a great deal of frustration with the seeming necessity for us to be such strong self advocates at a time when we may be at our weakest. Moreover, there is an equal frustration with the lack of research and resources that go to this "orphan" disease that is so difficult.
This discussion has grown out of the total lack of warning that is given to people with snb, who don't know to take precautions to avoid LE and don't know how to recognize LE and cellulitis when it does occur.
The women who have so graciously given of their own experiences here and have helped those of us who do not understand LE are, IMHO, not just breast cancer survivors, but also breast cancer warriors. I am grateful to them.
INITIAL POST: I had a simple mastectomy with only one node removed. I have been told that the chances of my developing lymphedema are very small. I don't really know what that means in terms of taking precautions to avoid it. Do I have to take all of those precautions, like no hot tubs, no jewelry on that side, etc... Or is that overkill? I will ask my surgeon when I next see him, but I am very interested in what others experience is with this. Are there any of you out there with only one or two nodes removed who developed lymphedema?
Any and all thoughts would be appreciated...
Claire
Comments
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Claire, hello! I love your Maori tagline -- beautiful.
Let me preface this by saying that the women who post on this board are the ones (roughly 40% of bc veterans, according to the most recent estimates) who developed lymphedema, not the ones in the majority who don't. That said, there are many of us here with lymphedema from a SNB. I'm one of them. I have lymphedema in both arms and both sides of my chest, from a single node removed on the left and a prophylactic mastectomy on the right. I wish someone had told me I was at risk, but all the information I got from my doctors went the other way: don't worry about it. I'm small and slight, haven't had any other trauma or surgery to my chest, none of the risk factors for lymphedema besides bc treatment.
Would I have taken all those precautions if my doctors had warned me about it instead of assuring me I was safe? I'll never know. We all make our own choices based on our perception of the risk and our perceived quality of life.
But knowing what I do now, I sure wish I'd had the choice. I'd have done an awful lot to avoid this.
Be well, and may you never have a "swell" day, ever!
Binney -
Binney...thank you...I needed to hear your story. I am sorry you have that story to tell, but I am ever so grateful you are sharing it. I have found such generosity from this community...the community of breast cancer survivors. May I be able to be just as generous for those who come after me.
I will take the precautions. I will move my wedding ring to my right hand. I will avoid hot tubs. I will moisturize my hands regularly. I will remember to get those nurses and doctors to take bp and blood work on my right. I will not carry heavy bags on my left. It seems like so much to do in the face of what the doctors say is a slight risk. It seems like so little in the face of such a difficult complication.
Thank you.
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Good luck CLC. Is your left your dominant side? I hope not. My lymphedema side is my right, dominant side. And even with already having it, it is so hard to do all those things because it is just second nature to me. I wonder if there are any studies showing the % of people who get lymphedema on their dominant side. Just wondering because I have a feeling that if it were my left side that had the BC that it would have been much easier to avoid doing all those things. My hypothesis: those who get bc on their dominant side are at greater than 40% risk of lymphedema; those who get it on non-dominant side are at lesser risk than 40% of getting lymphedema.
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kay...that is very interesting. My right is my dominant...so perhaps your hypothesis will bear out a good result for me...
I do strength train...will lifting weights put me at greater risk, or is that just weight on the shoulder with the arm hanging down? I would think that keeping that arm strong and moving would reduce circulatory issues, but what the heck do I know...so many questions for the surgeon, I guess.
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My bs participated in a study that shows weight training can reduce the risk of lymphedema, but you have to do it in a very controlled way I think. The moderators have some info here on exercising and weight training with lymphedema. I'm not sure how to get to it though. I am going to do an exercising with weights program for people with lymphedema or at risk of lymphedema when I'm done rads and the le is under control. I would recommend you not do anything until you speak with someone who can point you in the right direction with it.
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CLC - good to see you here, too! I would urge you to find a certified lymphedema therapist in your area and go for an eval. S/he can tell you all these things, and more, and measure you up for a baseline. I went after my lumpectomies w/SNB (3 nodes removed) in '02 and got a sleeve for when I lifted weights and for airline travel. That was on my left, non-dominant side. I will admit that over the last 10 years I got very lazy w/precautions and had NO issues, but as others have said, there are plenty of women who get LE after SNB. I am a regular exerciser, lift weights, do pushups, etc. etc. Gardening, lifting heavy groceries, etc. I have done it all.
Although statistically speaking, your chances are low w/just a few nodes removed, the thinking is that some women have compromised lymph channels to begin with and the SNB screws w/them more. Also, things can happen during the removal of those few nodes that can foul up the works . . . and then there's just bad luck. Many of us have that in spades! My experience is that the surgeons minimize the risks and are fundamentally uneducated as to risks and precautions - that's why I go elsewhere for my LE info/consultations.
I'm going to see my LE PT on Monday, in fact - now that I've had a BMX I'm at higher risk than ever and I really want to minimize as much as I can. You're good to cover bases!
Sarah
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Claire, information on the weight-lifting/lymphedema studies is available in the Position Paper on Exercise at the National Lymphedema Network (see also their Position Paper on Air Travel, Risk Reduction, and Breast Cancer Lymphedema Screening):
http://www.lymphnet.orgHow to find a well-trained lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmBe well!
Binney -
kay...Thank you for your words of wisdom. I won't do anything in the way of weights until I am sure...I try really hard to stick with only informed decisions, I think...
Sarah...you are prolific...and generous with your experience... I will see what I can find in the way of a LE PT... Hopefully, I will get the surgeon on board with that and get some insurance coverage for it...but with or without, I will do that... Thank you for always sharing so generously...
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Thank you Binney...just where I was headed next....
You all are awesome women!!
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Kay - My BC and AND was on my non-dominant side and I have LE in my breast and arm. I am often thankful that it is my non-dominant side because I think it would flare more often on the right.Have to be grateful for the little things, right?
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The exercising with weights program Kay1963 mentioned is something I've looked into. It's not widely available, and the key is to find a personal trainer or an LE therapist who has completed a train-the-trainer workshop, and who offers an extended series of sessions with LE/risk of LE patients, i.e. small-group sessions where the strength training is closely and carefully supervised, and following the guidelines for slow, progressive weight changes. I'm so frightened of this (but I want to return to strength training for what I know to be health benefits for me) that I'm bringing a train-the-trainer workshop to my rural part of Michigan, with the help of some local non-profit and corporate sponsors. Anyone who would like to have contact details to learn about bringing this resource to your area, PM me.
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Claire, Lumpectomy in right breast with two nodes removed. Mammosite radiation so axilla was not radiated. I am right dominant. I developed LE two weeks after. My breast surgeon was sure it was post op swelling but it was not. I was/am overweight so had that as a risk factor. I have LE in my right arm and trunk. I also have lymphatic cording under my armpit. I have been in therapy since March and am making good progress after switching to a second therapist in May. My therapist has put me on an exercise program and I am lifting very light weights and slowly increasing.
Would I have taken procautions if told to do so. You bet! Would it have prevented me from getting LE? I don't know. But it would have been worth a try.
Odds are on your side that you won't develop LE. Good luck!
Becky
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Becky...thank you. Your story, along with others convinces me to take the risk seriously. I won't be alarmed, because odds are on my side, but I won't disregard the real and serious risk of LE. Thank you for sharing...
Claire -
I am six weeks away from surgery (large lumpectomy on the right) with one lymph node removed and no LE. I ran into an odd problem. I write with my left hand, but I discovered I do a lot with my right side, including most picking up. I was lucky, since I was continually surprised to find that I had a heavy purse on my right shoulder and a grocery bag in that hand.
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Tarry...I am glad you have been fortunate. I also use my left (my non-dominant side that had surgery) for lots of the weight bearing jobs to allow my right the finesse work that actually requires coordination...:)
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I had a similar question. Is my risk to get LE lessening the further out I get without having any arm swelling at all? I'm two years out. Can I relax a little now?
Had lumpectomy, rads that only hit the SNB area (not entire axilla,) had minor chest/breast edema from surgery and rads and got PT two mos. after rads for that and it is fine now.
Another way to ask would be were any of you fine for two years or more, with no arm swelling, and then develop a problem?
Edit: Sorry, I see most are newer than me. I'll have to find that LE thread that is a hundred pages long and ask my question there too.
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Claire - I am very concerned about LE. I do not have it, but am involved in two different studies at a teaching hospital in Boston re: LE. My mother suffers terribly from LE and I have seen the effects and try to be aware in my daily life. I had 3 nodes taken, and go every 3 months to get arm measurments on a computerized machine that detects the slightest change. I feel that my hands fluctuate, and the machine is not as sensitive to hand measurements as it is to the actual arm. I have had fluctuating measurments, but still fall in the "normal" range. I go to the gym, raise two young children, engage in physical activities (within reason)...(hmmm, I never heard about not wearing jewlery)...basically I try to live my life as normal as possible, BUT I always remain aware of changes and I try to be careful/mindful in my daily activities when it is possible. My most recent surgery (fat grafting) I had the nurses start blood pressure monitoring & IV through my foot/leg. I have had blood taken in my arm since BMX/SNB, but was kicking myself after when I went for a measurment and I had change in that particular arm. I decided then that it wasn't worth the chance to get blood drawn there when there are other options. My main concern is not knowing if there is a hereditary disposition to developing LE (hence, my keen interest in being involved in the studies, too).
I think that knowledge and prevention are the best that you can do at this point. I live a normal life but if there is an opportunity to hand off a heavy laundry basket or a bag of groceries to my husband, I'll gladly do it
Wishing you all the best, Megan -
Elimar, we've had women here as far out as 24 years with new lymphedema. The gradually improving survival rate of bc patients means more of us will eventually develop lymphedema.
Hmmmmm....
Binney -
Thanks for the mention, Kay1963!
We believe you're talking about the Breastcancer.org Blog entries on Exercising Safely After Breast Cancer Treatment: How to Get Started and Exercising Safely: How to Find a Qualified Personal Trainer.
Hope you find this information helpful!
--The Mods
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Elimar,
Please follow the LE precautions forever. I first developed LE in 1998, which was 3 years after BC (masectomy w/TramFlap). I was doing hand-sewing and needle sticks set it off. Had treatment and no big issues with LE for 13 years (though left arm was just slightly larger than right).
And this past summer, after 13 years, LE came back--this time from increasing my amount of exercise. So always be aware.
So glad I found this board 2 weeks ago.
Garnet
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Sorry to report that I got it. Only had three lymph nodes removed during sentinel node biopsy. I got mine down my side, in my pit, and in my chest wall. It sucks. Do whatever the docs say to avoid it.
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Hi all - CLC, just had my appt. w/my LE PT and wanted to share what she had to say. Today was an eval., we'll do some massage next week to help get rid of this nagging post-op swelling I have. One interesting thing she did tell me is that I still have a "good" side! I have had 3 nodes removed on the left, and whole-breast rads to that side. That was 10 years ago. Now 4 weeks ago I had a BMX w/a SNB on the right, but only 1 node removed and I will have no rads. She said that the right is still a safe side for me (of course, I'm flashing back to the hospital where they were doing all my BPs on the left b/c the machine was on that side of the bed - ugh). W/only 1 node removed and the fact that there will be no further damage, the risk of LE is very very low.
She did stress that moving into exercise gradually is the way to go - that the studies in the last decade (this is all new since I was first dx'd!) have shown that when you work up and increase the weight a woman can safely lift, such that her activities of daily living are for the most part lifting LESS, that this is a great protection from LE.
I'll learn more as I go along, and this is one LE therapist's advice (albeit a very experienced and renowned around Boston one). There is always the flukey chance you can get LE w/one node removed - as we all know, anything can happen. So take it for what it's worth - can't remember if you had BMX or UMX, but if U, you have a good side, no worries. If you have no good side, she of course said that's where you move down to legs for BP, blood draws, etc.
Hope this give you some comfort/information. I will say that I feel enormously better for having set foot in her office - she is a wealth of info. and so much more forthcoming than my high-powered surgeons . . . getting my hand held a little thru this feels so good!
Take care,
Sarah
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My mom had single mast with 17 nodes removed in Sept 2001, this past September she was bitten by a bug on the inner elbow and now has LE in her arm (10 years out). Our surgeon said that you should maintain precautions as long as you are breathing.
3 years out from my bilat mast (3 nodes removed both sides) and I developed mild LE in my left (non-dominant) hand after using the electric weed eater too much in one weekend.
Sheila
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Thank you all for sharing this valuable information about lymphedema ... I currently have a call into my BS regarding extreme swelling on my dominant side (which is the side the SNB was performed) ... I'm 2 weeks out from bmx with TEs, and I'm having extreme pain and swelling to the point that I'm in tears ... my right breast near my armpit is swollen ... my right arm is swollen all the way down to my elbow ... and, I can't move my right arm without extreme pain ensuing ... it's also very warm to the touch ... And, I'm sooo upset that this topic wasn't discussed with me during my discharge from the hospital, nor during any time prior to surgery by any of the doctors or nurses ... I would have definitely taken preventative measures ... I don't know if I have lymphedema, or if it's swelling from the surgery itself, but I'm definitely going to have it looked at ...
Thank you all the the valuable information ...
Love~Peace~Joy
Trinity
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Sarah: I'm confused about the PT (and I'm assuming it's someone at MGH--that's the only well known LE PT I know in Boston, other than the one at Lahey) would refer to your single node side with a mastectomy as your "good" side--is she suggesting blood draws, etc from that side? That side is still at risk. Binney developed LE on the side of her prophy mx with NO nodes removed. You can chose to expose the arm to risk, but be aware of the fact that it's a concious choice and she can't guarantee that you won't develop LE in that arm. The lymphatic system was disrupted on that side--it's at risk. No one can quantify the risk, but when if it happens to you. it's 100%.
Trinity: I think you need to go to the ER!!
I'm really worried that you have an infection in the arm---it's swollen, painful and warm, and that sure sounds like a potential cellulitis--please call the doctor right away and strongly consider an urgent evaluation, and please let us know how you're doing.
Kira
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Trinity...gosh that sucks...I am sorry to hear that you're dealing with that...Good luck with the bs. I just saw mine today to get my last drain out and asked about LE. He said it is very remote and there is nothing I can do to prevent it anyway. I was dismayed. I don't think bs are very versed in LE. (I have one of the foremost bs in our area, considered one of the best or the best)... I am going to take the precautions I can and talk to an LE physical therapist in the area (thanks to the wonderful advice I've gotten here from everyone). Good luck and let us know how it is going...
Sarah...thank you for the update. I had a umx and have a "good" side. Everything you heard is very reassuring, but I will not take it all for granted and I will call an le pt today or tomorrow. Thank you, as always, for your wonderful advice and support. I hope your post-op swelling dissipates quickly...
Claire
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Trinity, with the extreme pain, swelling and the warmth to the touch, you need help right away, as cellulitis (infection) is a possibility. If your BS doesn't get back to you quickly either see another doctor or go to the ER. Cellulitis spreads rapidly and you don't need that!
Keep us posted, and I'm looking forward with you to quick answers and resolution!
Gentle hugs,
Binney -
Trinity - I agree w/Kira - sounds like an infection, friend - if your docs don't call you back soon (and I think you're some distance from them if I remember from another thread), you should go to the ER b/c cellulitis can run wild and spread really quickly. IV antibiotics can put it in check quickly. Not something to fool around with. Keep us posted, I'm going to worry about you now! Fingers crossed you get this resolved quickly and that you're more comfortable soon.
Kira - I hear you. Yes, this is what she said . . . curious for the name of the person at MGH, that's not who this is . . . would you mind PMing me? I have a long history with this woman and she is well-regarded in this area - one of the pioneers of LE PT and responsible for getting more research done on the subject. I know that when n=1 it doesn't matter what the stats say (hey, I had IDC at 32 years old!!). Wouldn't mind hearing more from you and Binney on this one, for sure.
Sarah
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Sarah, there are unfortunately several of us here with LE after a single node removed or prophy (I have bilat LE after one node taken on the left and prophy on the right). So, yeah, no guarantees and the risk is yours to take or not. Wish I'd known that...
Be well!
Binney -
Binney - I'm so sorry to hear it! I knew this could happen - I know pretty much anything can happen and it usually does, even if just to a few . . . do you have any ideas as to what triggered it? Like I said, I'm interested to hear all these experiences (and from Kira, who the expert at MGH is, since that's where I've gotten all my other treatment) . . . then I can make a better decision for myself. Thanks for weighing in and for sharing your experience w/me!
Sarah
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