Great Info about Lymphedema
Hi Ladies,
I just finished chemo and began radiation this week. I also had a follow-up with my surgeon this week. (I had 9 lymph nodes removed during the masectomy.) I asked the doctor if I could do exercises with my arm now. He gave me a very stern no and cautioned me about overdoing it and developing lymphedema.
I thought lymphedema was only swelling of an arm or leg. I didn't know it could be so extensive and painful until today.
I wanted to share with you all what I found. It was very helpful to me. I found it on the Living Beyond Breast Cancer (www.lbbc.org). It was in the mp3's and I also downloaded the powerpoint which was really good to go along with it. It is under the date 2011-10-01 Fitness for Recovery.
There was so much good info there given by a physical therapist.
I hope this helps someone. I am really going to make some changes.
Comments
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Hello, fondak, and welcome!
I skimmed the Fitness for Recovery pages and didn't see the reference to Coumarin (very long document!) but wanted to mention that Coumarin was tried extensively in the '90s. Some small studies found it helpful in reducing swelling, others (one from Mayo) noted no efficacy, so it was never proven to help. There was an unacceptably high incidence of liver toxicity with Coumarin use, so if you decide to go that route you'd want to weigh the risk and make sure to monitor liver function carefully. I'm surprised they'd mention that in a 2011 discussion, since it's not currently considered an acceptable lymphedema treatment.
Looking forward with you to quick, smooth sailing through rads.
You don't mention whether you already have LE or not -- hoping you're "swell-free" and will never have a "swell" day, ever!
Binney -
Hi Binney,
Thanks! Thank you so much for the info about Coumarin also. It is a very long document. I listened to it and it was like 30 min or so.
I have not had problems with lymphedema thankfully. My right arm has been a little swollen at times but ankles have been very swollen so I hope it's just from use.
What surprises me is that none of my doctors have explained it to me. I thought it was simply that my arm may occasionally swell somewhat. Until I listened to the mp3, I did not know there was preventative measures like with flying, hot tubs, etc. The nurse practioner did mention I would want to wear gloves when working outside because it can take cuts longer to heal and my surgeon just told me wanted to be careful and not lift weights. I asked him if that was forever (my surgery was in Aug and I keep waiting for him to tell me I'm free to do as I please w/my arm). He just told me I needed to take it easy because I could get lymphedema and I'm young to have it to deal with.
I love how I keep hearing how young I am at 46 with twins about to graduate high school.
I didn't even know there was physical therapy for after masectomy and to help you prevent lymphedema or about compression sleeves and gloves prior to and during radiation or that radiation increases the risk. I also didn't know that there were stages w/lymphedema. So much there which surprises me I wasn't told.
One concern I have is how I sleep. I have noticed I sleep on my stomach w/my right arm under my rib cage and my left out above my head. I've been trying to reverse that since my right side is where the surgery was but it's hard. Do you know if that can impact it?
Thanks again!
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fondak, yes, sleeping on your at-risk arm is not recommended. It might help to add a few pillows to your bed so you can maintain a position that either elevates your arm or at least doesn't put your weight on top of it. Bummer, huh?
Reliable risk reduction information here:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htmAnd here:
http://www.lymphnet.org
See their Position Papers on Risk Reduction, Air Travel, Exercise, and BC-related Lymphedema.Wow! Two grads at once -- that's a whole lot of celebrating!
Congrats to all of you,
Binney -
Binney4: I can never express my gratitude for your time in informing me about this. My surgeon, chemo oncologist and radiation oncologist said they all meet together to devise a plan for each patient. I am going to mention how helpful and necessary it is to inform their patients. I think they will be glad to have the feedback.
Toward the end of chemo, I would get baths as hot as I could stand it with espsom salts to help with pain. I also kept telling the doctors I was concerned about my weight gain and each time they would say that it's nothing to be concerned with. I gained 20+ lbs and I'm 5' 4! Since I started radiation they told me not to lose much at all until I finished......and I was just an average weight when I started not skinny by any means.
At church, I had my arm up on a half wall talking with someone and they told me they could tell I was retaining alot of fluid by my hand. Today, I asked my sons if either arm looked larger and they immediately said my right was larger.
I know keep going on here but I just want you to know that you have made a big difference in how I move on from here forward. Hopefully, your time and input will help other patients my doctors come in contact with.
I also edited my previous post to not include the Courmarin. I would hate for someone to read my post and get distracted or something and not see yours.
THANKS again....if you were here I'd give you a big Thank you hug!
Fonda
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Well, I saw the dr this last week after my radiation and his office made an appointment with a physical therapist. Apparently, I do have lymphedema. I just thought it was still the process of healing following the masectomy that I was experiencing.
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fondak, knowledge is power, and now you know you need to craft a game plan. Did the PT outline a strategy to bring the LE under control? And was the PT also a qualified LE therapist?
I'm not happy you have joined us here, because none of us wants anyone else to have to put up with LE, but I am happy you found us because as you've already discovered, Binney and some others are simply amazing resources and you can count on every single question being answered with rock solid information, whether drawn from evidence-based medicine or from the wonderful common sense of women who have been there, done that. I owe so many ladies here so much--and they will keep on sharing with you, too!
Carol
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Fondak - It really is a relief to find good info! The StepUp-SpeakOut site Binney linked also has a section on how to find a qualified therapist. You can check the LANA (Lymphology Association of North America) site for therapists in your state that have this certification. You can use it to check and see if your PT has this high level of training.
I can't believe I am just reading this tidbit about not sleeping on at-risk arm, ugh. That is THE side I have always preferred. I even slept on that side when I was having initial symptoms before it swelled, but it never hurt. I haven't done since it swelled though. Now I feel foolish, because it seems rather obvious it wouldn't be a good thing. Always finding out something new here! Binney, does that also hold true for truncal LE? -
Uh, I think I know the answer to my question. If you're not supposed to sleep on at-risk side, if that is side with truncal LE the answer must be "no".
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Tina, think gravity.
Like you, I'm a side sleeper, so sometimes I do still indulge, but I pay for it. Because my truncal LE is bilateral, I now sleep on my back the way "Cincerely" once described: head on the pillow, shoulders flat on the mattress, knees propped a bit with another pillow. It took awhile to get used to (understatement
), but it really has helped me. I think it's a very personal decision, though, as not being able to use your own "comfy" position is practically unthinkable.
You might want to try a few different arrangements and see what works for YOU and then decide if it's worth it to you.
<Sigh!>
Binney -
Not sleeping in my habit position is for me one of the worst parts of all this. I think Binney posted about this a few months ago, and I started avoiding sleeping on my affected side. Definitely I notice that achiness in my axilla is much less on awakening compared to when I slept on that side without thinking about it. Doesn't seem to bother my truncal area, just under the arm.
There was a 'duh' moment when I realized that an ache I took for granted didn't have to be there. Now when I flop over on that side during the night, some little voice wakes me up so I turn the other way. I just wish the little voice would tell my brain to turn over without waking up the rest of me! I have tried pillows to create a barrier, but my slumbering self apparently just takes that as a challenge and I push them aside. I am hoping that eventually, I will have trained myself to stay off that side and the periodic awakening will stop.
Carol
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Thank you SO much for the tip about not sleeping on the affected side! I had surgery in June, chemo and rads that ended in December, and though I've been going to a PT 2x/week, I still keep having swelling. It's not awful, and I've seen photos of much worse, but it's annoying and my right upper arm is certainly bigger than my left. I had been thinking light exercise would help, but it doesn't seem to, in fact makes it worse. Sigh, indeed! Compared to everything else, this is small potatoes but I'd like to know what I can do to alleviate this. Does anyone know what exercise is good? I've been doing yoga and pilates, and I'm wondering if the push-ups are not causing part of the problem. Thanks for your advice!!
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Lucy--downward dog and pushups are not considered a good idea for women with lymphedema.
I'm going to try and find a post that Carol wrote on exercise that sums it up beautifully: she mentions the PAL protocol which is a weight lifting protocol developed for women with LE (lymphedema) the key is SLOW and STEADY, and backing off from exercises which stress your arm and cause swelling.
Here's what Carol wrote:
http://community.breastcancer.org/forum/64/topic/784378?page=1#post_2919717
dlt10960, Your certified personal trainer can ask for a copy of the PAL Protocol. The Univ of Pennsylvania does not give it out to us mere mortals, but they will give it to a qualified trainer. Here's the link to fill out the form to ask for it: http://www.penncancer.org/physical-activity-and-lymphedema/receive-pal-intervention-materials/
The PAL Protocol is a very detailed explanation of the exercises used during the PAL trial, and your trainer will know just how to interpret the information in the document. As a general description, for upper body work, the idea is to start with very low weight (1 lb..feels silly but that's the research-based way to minimize LE risk), add in very small increments, gradually, lifting 2x per week. If you miss more than a session, back off the weight to the prior increment.
Avoid body-weight exercises that have you bearing weight on the upper body (i.e. push up, plank), because it's not feasible to know how much weight you are bearing, nor to build in small, measured increments. Bodyweight exercises are possible after you have built up through the slow weight progression over time.
If you have an LE diagnosis: wear a sleeve and gauntlet or glove. If you do not have an LE diagnosis: it's a judgment call. Any tingly feeling, or heavy feeling in your affected arm? If so, try to see an LE therapist now for an evaluation, because you may have subclinical (net yet visible) LE, and in that case, were it me, I would be wearing the sleeve/gauntlet when lifting weights.
(And if you have the tingly/heavy feeling, get that eval even if you're not going to lift weights, because research suggests that if you treat it while it's subclinical, you may be able to reverse it.)
Your instinct to start working with a trainer to lift weights is spot on. Think about this: if we can condition our arms/trunk to lift heavier weights, the fact of lifting heavier weight will be less likely to get the lymphatic system all excited and trigger LE. The trick is to avoid triggering LE while you lift gym weights to build up your ability to lift daily-life weights--hence the slow (annoyingly slow) pace of adding weights to your program.
For lower body: Have at it, except of course, watch for lifts that also require help from the upper body, like dead lifts and weighted squats. The PAL Protocol helps your trainer interpret this.
I don't think you're being silly at all, and activity like raking is highly repetitive against resistance, so I think you do want to stop and rest pretty often. I hope someone else will drop in here and suggest strategies for doing that kind of work while taking some LE precautions.
Good luck with all of the above! I have LE in my upper arm and on the side of my trunk, and I am now about 8 weeks into weight training, following the PAL Protocol, with a certified trainer. The weights I'm lifting are humorously light compared to before my bmx last summer. But I also take great pleasure in reporting that I can tell I'm regaining my prior strength, and so far (knock on wood), I have not had a single experience of my LE flaring during or after a training session. (Wish I could say that about flying, sigh. I need a research-based FLY protocol!) I wear a men's short-sleeved Under Armour compression shirt to support my LE side, in addition to wearing the sleeve and gauntlet while training.There is a NLN position paper on exercise, but Carol says it much better, IMO. Is your PT trained in lymphedema??? If not, they will not know how to treat it. Early on I saw a PT who said she was trained, and her advice was all wrong, and likely caused me to get it so early on.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Kira
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Hi everyone -
I'm finishing up neoadjuvant chemo this week and my UMX will be the end of April or beginning of May. Before chemo started I had at least one positive node so my surgeon is going to take out both level 1 and 2 nodes (I'm stage 3 due to skin involvement). When I asked him about lymphedema he said I only had a 15-20% chance of that happening, which seems to be a lower risk than what I've read. I would like to do all I can prevent lymphedema - especially since I'm also going to have radiation. Should I make an appointment with a physical therapist before surgery?
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Mamabee--it would be very helpful for you to see a LE therapist prior to surgery, to measure you, help teach you some node clearing exercises and help follow you.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
The National Lymphedema Network would like all women to be evaluated pre op.
Hope all the treatments go smoothly and you never officially join this forum, but we're always here for you.
Kira
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Kira is correct about low/no level of LE training for PT's. My first PT had some LE training, and that can be the most dangerous! First, the patient thinks they are working with a knowledgeable therapist and will be less likely to question exercises/instructions. Second, the therapist thinks they know what they are doing. My first therapist had me doing pushups not long after surgery, and she had me continue with them and other equally bad exercises even after she diagnosed me with truncal LE. Exercise was her method of therapy for LE and she didn't do any manual lymphatic drainage. Manual lymphatic drainage is definitely part of the intensive phase to reduce swelling, along with wrapping and other forms of compression. Your therapist should teach you how to perform on yourself so that after treatment ends it is one of the skills you have in your toolbox to manage swelling.
mamabee - If I could go back in time, I would get measurements of both arms taken by a qualified LE therapist prior to surgery. This way you have good baseline measurements, and if you develop any unusual sensations in your arms you can stay on top of the LE while it is still in the pre-clinical stage. It can be reversible or much more easily managed when addressed earlier. -
Thank you for the advice kira & Tina - I will make an appointment today.
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I have Truncal LE and some arm involvement...mine is considered Stage 2. It is scored 0-3. I would never have known I had it were it not for Binney. She convinced me to pursue it despite my RO's objections. I go to a wonderful licensed therapist who has been amazing. I had no idea how much there was to know about LE. My compression sleeves are ordered and I may get some pretty bras too. There is much to learn, plenty of massage technique and exercises.
I do get a lot of swelling in my breast and underarm. I just have to be vigilant about keeping up the exercises.
Good luck to anyone headed down this path. It is manageable!
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I definitely have LE but I also still have a post surgery hematoma at the scar from my SNB. It started the size of a golf ball but slowly shrank to the size of my thumb nail. It has stayed that size for 4 months. I am wondering if it might be the cause of my LE. My ONC doesn't seem concerned. Anyone else have that problem?
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Hello Everyone,
I want to do all I can to prevent LE without emotionally attracting it (if that doesn't sound too strange). My BMX was 3/5 and I have had numbness off and on in my right hand. The doctors discount it as being "normal" - I had 2 nodes taken from right, 1 from left. I need to have surgery again on 4/24 due to poor TE placement. Part of the pre-opt testing involved blood work, and I had them take it from my foot but I needed doctors permission before the hospital would do it. I'll need an IV for the surgery - where do they put it if not in the hand and how do I get them to listen to me. Pre surgery for my BMX I told the nurse I did not want the IV in my hand and the nurse brought the doctor in and she convinced me not to put it in my neck because it would interfer with them working on my chest. Is this typical placement (in the neck)? I feel like I need to educate my doctor prior to surgery so that I am not challenged on the day of surgery. Thank you for your help.
Shannon
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Schatz, seromas can definitely increase the risk of LE, and I had a whopper axillary seroma, that hung in there for 5 months until I finally got the breast surgeon to aspirate it.
Where is your LE? Do you have a therapist?
Greenmonkey: there is a page on SUSO about information for health care providers:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Perhaps that could be helpful. There is also a thread about getting our providers to respect our risks, I'll see if I can bump it.
Kira
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Kira
My LE is on my affected arm...it has been 8 months since surgery...chemo and rads are done. I am having trouble finding a registered therapist in my area but I have a number to call tomorrow. Hope she can help. My RadOnc suggested draining it but the surgeon's office told me to see my family Dr. who did say at one time he would drain it but now I wonder about any needles on the LE side.
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Thanks Kira!!!
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Schatzl--it's a tough call about draining it--mine was drained 4 months post op, about a month after rads--it had not shrunk at all. It did come back, but then slowly went away. It was there two weeks post op, and the surgeon asked ME what to do, and I told her to leave it alone.
Then, a year or so later, there was a study, just presented as an abstract, linking seromas to LE. But if it is a hematoma, it's all clotted and likely won't drain. A seroma is lymph/serous fluid, hematoma is blood. If it's gone down from a golf ball to a thumb nail, it sounds like it's on it's way out, without the risk of a needle.
http://www.abstracts2view.com/sabcs10/view.php?nu=SABCS10L_478
I have to ask, what's with the surgeon, sending you to the family doctor? Surgeons drain seromas, not typically primary care doctors. After all, the surgeon caused it.
Hope you find a therapist soon!
Sharon50 who is on the boards lives in Ontario, and may be aware of local resources. She's wonderful.
Greenmonkey: hope the information helps, and when in doubt, pm Binney.
Kira
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Kira ~
I second your remark about if the BS caused it (seroma) they should take care of it. Does everyone trust their PCP with a needle near an implant?
That was my same thought (should be BS) for my refractory axillary webbing/cording. It sounds like other patients have the plastic surgeon excise it. I'm having mine excised by plastic surgeon during revision surgery, too.
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Kira
Sorry I didn't see your reply until now...yeah I dunno what's with the surgeon...he was so NOT helpful after the surgery. In the meantime, the hematoma has become calcified I am afraid. Hard as a rock and altho I don't have an implant (lumpectomy with a 4" scar) I am not too happy with ANY kind of surgery near the node scar. Not too sure what to do...finally found a therapist and she tried to manipulate the lump but it didn't do any good.
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Schatzi, hopefully it will just continue to shrink. I work in rad onc, and we had a woman who got a huge hematoma after "brachytherapy"-like mammosite--and they tried to drain it, but it was still so big, but it's shrinking with time. Hope yours shrinks also.
Kira
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Kira...thanks but it started the size of a golf ball...then to this size (moth ball ) then just stopped shrinking..it's been this way for 6 months now...it's totally hard and not moveable. The rad onc said it WASN'T cancer and not to worry but see a therapist. I am torn about what to do...I am scheduled to see my MO next week...will see what he says.
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an update....my ONC made an appt for me to see my BS and when he saw the lump under my SNB incision, he was puzzled. He was going to take a sample but decided to drain it instead...to his surprise it was just yellow fluid...he drained 2 syringes full and presto the lump was gone. He feels sure this will help with the MLD in reducing the swelling. We will see!
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Schatzi--it was a seroma, and definitely should help, now that it's gone
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