Breast & trunk LE
I'm so relived I have found this forum. Already I feel I will be heard. I developed breast LE about 5 months ago on completion of rads. I had a lumpectomy & ALND 9 months ago and am completely dismayed to discover I have LE. My left breast is red, swollen and painful and can barely touch it. I can't bear my arm resting on the side of my body against my breast. The pain is mainly at the scar site where the fluid builds up. I'm wondering if a lumpectomy was the wrong decision & weather a mastectomy would help? I se a LE therapist but don't get much relief at all, she finds she cannot get my breast to drain. I also have mild LE in my arm.
Another major issue is finding a compression bra. I'm small framed with large breasts 34DD and cannot get a good fit and I've spent a fortune on bras. My left breast has gone up about 3 cup sizes and find pressure around my trunk too much for my lymphatic system to cope. I cannot find comfort day or night and I'm at a loss of what to do.
I'm feeling depressed as I was hoping I could put my breast cancer experience a few spaces to the back of my mind, but the pain & discomfort constantly keeps it in the forefront. I hate it! I feel it is a taboo subject with surgeon & onc & get no support. One of the biggest ironies is that my onc told me that I must do weight bearing exercise 5 hours a week to keep my ER+PR+ cancer ar bay & minimize the affects of Arimadex but I can barely sweep a floor without raising my heart rate for the fluids to build up!
I try to feel positive about getting my life back on track & getting fit but I find a dead end wherever I turn. I just add it yet to my long list of things that cancer has taken from me.
Comments
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Oh Pinky! The incidence of breast/trunk LE has risen dramatically with SNB, and the good news is that it tends to get better over time.
Please don't do weight bearing exercises without INPUT from your LE therapist. Carol57 is our resident expert on weight bearing exercise, and I'll try and bump up a thread for you.
There are a lot of resident experts on breast/trunk LE: Binney, Carol, Tina, KCShreve, and many others.
Other women will soon chime in and tell you what compression works for them.
I used to work for a rad onc, and I've seen a lot of breast LE, and often this is just the worst time of it. But don't underestimate the suffering and the pain--it's real!
Here's a page on the topic for you:http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm There is a link to an article on this page that you can print out and send to your onc, if you want. It's from journal of lymphoedema.
NO weight bearing exercise without strict parameters of go slow, go low and watch to see how your body responds. Your onc likely read the Schmitz weight lifting studies on women with LE, and came away with the mistaken (but very common) conclusion that weight lifting cures LE. Unfortunately it doesn't. Done properly, it can help strenghten you, but all the studies used women whose LE was STABLE. Requiring no treatment for at least 6 months.
We're here. This is familiar. We want to help.
Kira
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I'm going to find some great posts from Carol, on weight lifting: we need to pin these to the top: read the last one first, IMO.
Post a reply Report this PostAug 28, 2012 09:56 PM carol57 wrote:
Linda, the PAL Protocol stands for Physical Activity and Lymphedema, and it is a set of weight-lifting guidelines developed by Dr. Kathryn Schmitz and her research team at the University of Pennsylvania here in the US. The research goal was to find out if the age-old advice is accurate that those with or at risk of LE should not lift more than 10 or 15 pounds. So they did an 18-month trial to introduce women with LE to weight training, crafting guidelines as they went, based on what lifting behaviors triggered problems, and what approaches did not.
There is some controversy over whether the study authors over-reached in their conclusions about whether weight lifting can protect us from LE. One school of thought is that by conditioning our arms and upper bodies, we prepare the body to heft greater weight without signaling 'stress' to the lymphatic system. This appeared to work for many in the study, but it did not protect everyone--some participants had LE flares with exercise, no matter how carefully they followed the guidelines.
One good resource for understanding what the PAL Trial tells us is to read an article that Dr. Schmitz wrote after our friends at Step-up, Speak-out.org challenged her on some of the journal article's interpretations. They were particularly concerned because the media at the time (2009) picked up a few sentences in the original research publication and published headlines that 'weight lifting can cure LE' or 'can prevent LE' which are certainly not true. So in this article--www.lymphnet.org/pdfDocs/Weigh...--Dr. Schmitz explains what, in her view, the Trial results do and do not mean regarding LE risks.
There are so many variables in any kind of exercise--how fit you are when you start; how often you do it and how much rest you get in between; form--do you have someone else watching to make sure it's as good as you think it is?--and in weight lifting, how fast you are adding weight, and whether you are doing lots of repetitions with light weight, or fewer repetitions with heavier weight. So there's never going to be a one-size-fits-all effect of weight lifting or any other exercise on our LE. Oh and of course, read any ten posts in any LE thread and it becomes obvious that we all have different manifestations of our LE! No wonder the LE outcome of exercise is so individual.
Post a reply Report this PostJul 31, 2012 12:07 PM carol57 wrote:
Agada, there is no evidence to show that exercise prevents LE, but there is a strong association between exercise -- including strength training -- and reduced risk of LE for those as risk, and reduced incidence of LE flare-ups for those who have been diagnosed with LE. Association means the relevant studies point to reduced risk, but the risks remain nonetheless.
Having said that, there's a whopping huge common-sense relationship between exercise and LE. Muscle movement against the lymphatic vessels is what pulses the lymphatic fluid (lymph) through the lymphatic system. So movement of muscles promotes lymph movement. Strain of any kind--including picking up something too heavy for the limb or trunk--signals 'need help' to the lymphatic system, which in turn sends more lymph to the rescue. So--here's the common sense--doesn't it seem logical that if we condition our limbs and our trunk to be able to bear heavier loads, the lymphatic system will in turn not get so excited when we lift, push, or pull something heavy? The exercise studies of resistance training are showing that this bit of common sense does indeed translate to reality.
Exercise can bring its own LE risk, though, so we have to work on getting its benefits while minimizing those risks. Raising the core body temperature signals 'stress' to the lymphatic system. Lifting a dumbbell that's too heavy (haven't worked up slowly to that weight) signals 'stress.' Repetitive arm motions (like rowing) signal 'stress' to the lymphatic system. So--be careful about exercising in very hot conditions; drink lots of water to rehydrate; wear wicking fabrics; get in a swimming pool for exercise; follow safe weightlifting guidelines that include adding weight in small increments and avoiding bodyweight or resistance-band exercises where we cannot measure the amount of weight load (nor add to it in small increments).
Patients with LE wear compression sleeves and gauntlets or gloves while exercising and weight lifting. At-risk patients without a LE diagnosis should consult with a lymphedema therapist to help decide if compression is needed.
On the rowing, my common-sense answer is to get the trunk and arms nice and strong before doing any extensive rowing, so that the unavoidable repetitive motion is tempered by having plenty of strength to push/pull the oar/paddle. I just completed a five-day kayak trip, paddling as much as 7 hours a day, and I am convinced that my LE would have exploded on me had I not been following an LE-safe weightlifting program (PAL Protocol-compliant) for six months.
Would rowing or other exercises ever cause LE? I don't think we have an answer on that. If you are already at risk from BC treatment and surgery, and especially if you are pre-clinical (no visible swelling, but the arm can have up to 30% extra fluid without visible swelling), rowing or similar hard-work exercise might be that straw that break's the camel's back. (Funny saying, now that I think of it--camel retains water in the hump...). Or, you might unfortunately be genetically predisposed to getting LE (research supports that), and while the rowing might precipitate the onset of LE symptoms, it would not technically be the cause.
Clear as mud, no?
Jul 14, 2012 07:05 PM carol57 wrote:
I wrote this long post a while back, to answer some questions from women at risk of LE. So some of the comments talk about avoiding LE, but the information is just as valid for those of us who already have an LE diagnosis and want to build strength safely.
Guidelines for cautious resistance training--designed especially to address LE risk--were developed as a product of an 18-month research trial called the PAL Trial (for Physical Activity and Lymphedema).
Here are some highlights, and I do recommend that you read the related journal articles--I'll put links at the end here.
--Start with very, very light weights and move up very, very slowly. I was lifting extensive weight prior to surgery, but when I returned to the gym afterward, I started with one pound dumbbells for my arms and other upper-body lifts. Talk about feeling silly...but LE is nothing to fool around with, so I gritted my teeth and decided who the heck cares what it looks like. Then I added weight slowly, meaning one pound per week, initially.
--Use dumbbells or other weights that are marked on them. Items such as soup cans are handy, but their weights are not standard, so they make it very difficult to know for sure you're adding to your lift load in small, measured increments. Also, for best form (and form matters, to avoid injuries, LE-related and otherwise), it's best to use dumbbells, for a better grip. One option is to purchase a set of power blocks that go as low as 1 lb. If you google it, you'll see what I'm talking about. That's what they're using in follow-up research being done by the PAL Trial researchers now.
--Resistance bands are not a safe way to do strength training if you have or are at risk of LE, because you cannot know exactly how much resistance you add or subtract when you alter your hand placement or move to a more resistant band. One key tenet of the PAL Protocol is that they determined that women have the least chance of triggering LE (or making it worse if they already have it) when weight is added slowly and progressively, in small measured increments. Resistance bands are tempting because they're inexpensive and easy to store, and if you travel, they go right along with you. But--they invite more LE risk than relying on measured increments from dumbbells.
--And then there are those body-weight exercises, like planks for our abs and pushups for the pectoralis area. By now you can predict what I'm going to say--not such a good idea for us, because--you guessed it--impossible to say how much added resistance you get when you alter your position to make the move harder.
--This is not to say you NEVER use resistance bands or do push-ups, and even Dr. Katie Schmitz, the lead PAL researcher, has said it's possible...eventually. The idea is to build significant strength using the (broken record here, sorry) slow, progressive method with dumbbells. Then--and seriously only when you have a good long track record of adding your weights slowly--might you begin to add some bodyweight work--and that only if all through your program so far, you never triggered any LE symptoms (ache, heaviness, tingly, and of course, swelling).
--Then there's the question of wearing compression while working out. Anyone who already has LE should be wearing a compression sleeve and hand compression (glove or gauntlet) while lifting weights, and probably while doing cardio work, too (because just raising your core body temp during cardio adds load to the lymphatic system, and then you add to the challenge by using arms for long, repetitive motion in some kinds of cardio work). The National Lymphedema Network says that whether to wear compression or not is a judgment call when you do not have LE--but are 'just' at risk (oh, and risk after SNB is not trivial--up to 17% for arm LE and much, much higher for breast LE if you had SNB and breast-conserving surgery, and especially if rads are thrown in). To make that decision, it's best to consult with a qualified LE therapist, generally a PT who is also a certified LE therapist, hopefully with the letters LANA after his/her name.
(I'm killing you with info here, I know, but LE rots and we do what we can to avoid it, or to minimize flare-ups when we do have it.)
It's a great idea to work out with a certified personal trainer at least a few times, and a trainer can request the actual PAL workout guidelines by going online here:
www.penncancer.org/physical-ac...
I live in a rural part of w. Michigan and am nowhere near any gyms that offered PAL-compliant personal training, so I recruited support from two hospitals and brought one of the PAL researchers to town last December, for a one-day workshop she gave to a group of personal trainers and LE therapists. So now we have some good PAL training resources here. You could do that too, and if interested, I can get you started on how to make it happen.
To read the original PAL report explaining how strength training guidelines were developed for breast cancer survivors who have lymphedema:
www.lymphnet.org/pdfDocs/PAL_N... .
Then there is the PAL-Trial evaluation of weight-lifting risks to women at risk of lymphedema, available at: jama.ama-assn.org/content/earl...
Lead researcher Kathryn Schmitz wrote an article clarifying misconceptions about the PAL Trial results, which were poorly reported in the media when the study was released:
www.lymphnet.org/pdfDocs/Weigh...
The Livestrong program is great, definitely designed for cancer survivors, but their trainers get only a little background in the PAL guidelines. So at minimum, I hope you'll read the resources I linked here, so you'll know what to ask about and when to object if an unwitting trainer suggests a move that's not really good for you.
Do lift...but do lift intelligently! 40% of us will get LE after BC treatment, and the risk is particularly high during the 3 years post-treatment. Some lucky women in the 60% club can lift, push, pull, do pushups and yank on resistance bands and never get LE. No one knows why some get it, some don't. You cannot know if you're in the 40% or the 60%, but being careful to do smart weightlifting could help nudge you away from the group that gets this crazy condition.
Wishing you only the best--
Carol
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Pinky, Kira found posts I wrote in response to some ladies who wanted to start weight training and might not have known to be cautious, because of LE or the risk of getting it. I'm so glad that Kira also pointed out that the research showing us exercise can work with LE, also tells us that our LE needs to be stable before starting this. So I hope you will indeed work with a qualified LE therapist to find ways to tame the LE beast, as well as to begin crafting a longer-term strategy to do the weight-bearing exercise that your onc believes will help with the Arimadex. Keep in mind that 'weight bearing' can mean walking, or using an elliptical machine with some resistance added. You might be able to do some of these activities in small doses, focusing on lower body activity. Raising the core body temperature can aggravate LE, however, so if you do start walking, keep the pace to just under what would make you sweat, and then see what happens with your LE before pushing yourself any harder.
On compression, have you tried experimenting with compression shirts or camisoles? I know you said that compression to the trunk hurts, but maybe, just maybe, what we might call 'broader' compression would work better, because it eliminates some of the constriction just under the breast, and at the scar site. With large breasts, this may not seem like it would be comfortable, but some have found it works better than any bra. On the stepup-speakout.org site, there's a whole page about compression wear, including camis, so you might find some inspiration there. Many of us wear UnderArmour compression-fit shirts (label has to say 'compression' or it's just a t-shirt), which you can try on at lots of sporting goods stores. If you decide to look into this, be sure to bring both mens and womens' shirts into the fitting room, because the cut of the arms and the general fit might work better in a mens...that's true for me. Also try on a size smaller than you think you wear--better compression.
Getting no support on LE from our caregivers is unfortunately pretty common, because most simply are not trained in the lymphatic system and in diagnosing/treating LE. It's true that BC takes so much away from women, but I hope you'll spend some time in this LE forum to discover how much giving goes on in here--information, advice, and tons of support, and we have a great spirit of keep-it-accurate, with some wonderfully expert women who will step in and gently correct any missinformation that gets posted.
I think you'll get some more suggestions on the compression problem, soon. So let's ask:
Large-breasted women with lumpectomies who got truncal LE: What's working for you?
Carol
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Hi,
I'm new to posting, but have gotten so much great information since discovering this site after my diagnosis in July. I had a lumpectomy with SNB August 30th with virtually no pain afterwards. A few days later, my armpit started hurting, but was controlled with the pain meds and ice. A few days after that, I started to get a pain in my elbow joint, my back, and my ribs. It almost feels like bad bruising. I mentioned it to my BS at my post op appointment. He said, don't worry, it will go away.
The pain hasn't gone away and gets worse when I bend over. I searched the internet and came across truncal lymphedema. I'm wondering if I might have this. The only swelling I have is in my back. I'll mention it to the medical oncologist at my appointment later this week, but worry it won't be taken seriously.
Any advice?
Thanks,
Susan
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Susan, hello and welcome!
I'm sorry for the reason that brought you here, but glad you found us. Since the back on the treated side is part of the quadrant of our body that is at risk for lymphedema, there's a good possibility that's what you're dealing with. And the sooner it's evaluated and treated, the easier it will be to manage going forward. So in other words, if the response is dismissive you may have to stand firm and insist on some answers.
Part of the problem here is that our doctors get very little training in diagnosing and treating lymphedema, since no medical specialty has been designated to deal with it. So here's a page written for doctors, by a doctor with lymphedema, that gives them a brief but well-supported introduction to the subject. You might want to copy it off and bring it along to talk with him about:
http://www.stepup-speakout.org/essential informat for healthcare providers.htmThen too, if you can spend a bit of time doing some "homework" before your appointment, here's how to find a well-qualified lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmYou can actually get a referral from any member of your medical team, even your PCP. The therapist will do a thorough evaluation, take measurements for future reference, talk with you about your/her treatment goals, and help you get started with therapy to reduce the swelling and self-care to keep it that way.
Please let us know what you discover, and how your med onc appointment goes. Looking forward with you to some real answers and great help!
Gentle hugs,
Binney -
Dear Carol, Kira and all you wonderful women,
thanks for your fantastic information and advice. My head is swimming with homework and I can't wait to get started. I shall keep you all posted.
Kind regards,
Pinky -
Pinky, that's great! I knew zero about lymphedema when I got it, and at least for me, a big part of return to sanity is figuring out what I have and what I need to do to make it better. With LE that's been a challenge, but I will say it has been a very, very interesting challenge. Sounds like you're going to dive right in and take charge of what you can. Bully for you!!
Carol
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Binney,
Thanks for your help. I have checked out the website and plan to go to the appointment prepared! I will definitely keep you informed.
I feel so lucky to have found this website with so many wonderful women.
Susan
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Thanks Carol,
I realise now I have to take charge and figure what works for me. I guess we can't complain about boredom, as it presents a challenge for us to be our own physicians. Enduring treatments with the goal of being cancer free was the original plan then the deal breaker was unexpected LE. But yes there is good news and that is with the support forums like this for invaluable support for our physical and emotional wellbeing. I amazed at the depth of knowledge available here.
Thank You -
So I had my appointment with my med onc today. She examined the swelling in my back and said it's from the surgery and should resolve itself. She feels the pain I've been having is also due to surgery. She told me to wear a supportive bra. I plan on calling my surgeon tomorrow to ask him about the swelling (which I just noticed yesterday).
I have also had some crazy, almost constant itching in my back, arm and under my breast. Has anyone experienced this?
Thanks,
Susan
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zuzer, When I look back on my first truncal symptoms I had a weird itch at the back of my armpit. I would scratch it but it wouldn't relieve it. It was kinda of like a internal itch deep down. It didn't drive me crazy but it was there to notice. This I think was about a year before I started wearing shapers to bed. I don't get the itch anymore. If I am not a good little girl and I don't wear my shaper(to bed) with a swell spot covering my former itchy back of pit spot then I get a fullness when I wake up in the morn. Not sure what you have going on, just giving my experience.
I wouldn't wear a bra that cuts or leaves a indentation. This traps fluids.
As Binney said, your Doc probably knows zip about LE. My doc laughed and said" Oh you'll NEVER get that!" Where are my poisen darts!
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I have a question for you gals with breast LE. I had radiation, and the hardness, swelling, bumps and pain seem to be getting worse. I finished rads in May- I was told by my Ronco and BS that it will take time to heal. I would think that it would get better, not worse? Any of you have this issue?
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Lory, hello!
Any member of your healthcare team (even your PCP) can write you a referral for an evaluation by a well-trained lymphedema therapist. They're the medical professionals who are trained to diagnose and deal with LE. Our surgeons and oncs have much less training in LE, so can be slow to recognize or send us for treatment. Recent research, though, shows that prompt treatment makes is easier to reduce and to treat on-going, so getting to a good therapist NOW can save you some grief. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmBy all means do get this checked out--win/win! Let us know how it goes. Gentle hugs,
Binney -
Binny, I have an LE therapist that I utilized until my referrals ran out. I also haved a flexitouch, which I use twice a day. I do know when I get overheated (which is all the time) the swelling goes up. I am looking forward to the snow flying. I was wondering if anyone else is dealing with the sore lumps and bumps despite all this treatment like I am.
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