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Constant fear of lymphedema--VENT

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gb2115
gb2115 Member Posts: 553
edited April 2022 in Lymphedema

Ok, lumpectomy + 3 nodes removed, and radiation to ALL the lymph nodes. I have already seen a lymphedema therapist twice as part of an ongoing monitoring program (she takes measurements every 3 months or so). No swelling yet. Yet I live in <<constant>> fear of lymphedema. The list of precautions is almost overwhelming, everything that needs to be done to protect the arm. Every paper cut freaks me out. And activity...from what I read activity prevents lymphedema, treats lymphedema, and causes lymphedema. My therapist said to increase activity gradually. Ok, I'm trying to do that, but feel like it's a crapshoot. I did a Leslie Sansone walk away the pounds DVD yesterday (30 minutes) and did about 1/3 of the arm moves she was showing (trying to ease in). Was it too much, I have no clue. Although if lymphedema develops from such gentle arm work, it's probably going to happen anyway and therefore such a person is generally screwed. I used to be soooo active, this makes me want to cry. I might be tearing up...

And the "don't injure your arm" bit. Short of living inside bubble-wrap, how do you do that? I'm at work, and there is a giant mosquito flying around the break room. I will be afraid to go in there to eat lunch, lest I get bitten and end up with lymphedema from a stupid mosquito. I would ask someone to go in there and kill it for me, but they'll think I'm nuts. They already probably do.

Sorry, I'm really frustrated. This is no way to live. I could use a pep talk if anyone can help.

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  • summerangel
    summerangel Member Posts: 182
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    I was pretty paranoid at first, too. The fact that you had few nodes removed is a good thing, so that's something in your favor. Also, if you are of normal weight (or can get to a normal weight), that also decreases your risk. There isn't a ton of hard research about the causes of Lymphedema, a lot of studies are retrospective and/or anecdotal, so some of the advice given is "just in case" (or CYA Winking). The hard evidence I've seen concluded that the three biggest risk factors are 1. Overweight, 2. Lots of nodes removed, and 3. Radiation. The things like "don't injure your arm" and "avoid bug bites" and "don't fly long distances without a glove/sleeve" are possible triggers, but I have yet to see valid studies showing the direct link between these things and Lymphedema while also accounting for the main 3 I've named. Personally, I just got sick of the paranoia. I don't have any of the big 3 risk factors, but I did have nodes removed from both sides and have had to have many blood draws and blood pressure readings since. I also love to cook but have Essential Tremor so my shaky hands cause quite a few cuts. I have flown only once but a 2 1/2 hour flight both ways while sound asleep the entire time (thanks to Xanax), and I lift weights regularly. In fact, my arms are sore as I type this. I did start out slowly with the weights after surgery, though, which really just makes sense.

    Everyone needs to decide for themselves how far they want to go with the precautions. This is just what I've done. I also got an opinion from a LANA-certified physical therapist about these things, and that helped shape my decisions on the subject.

    Edited to add that I do not have Lymphedema, just in case that wasn't clear.

  • letsgogolf
    letsgogolf Member Posts: 65
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    I also worry about this. I had 8 nodes removed and am about to begin radiation to the whole breast plus regional nodes. I have read several studies that seem to give different stats on the lymphedema cases. My doctor said risk is 3% but I am reading it is more like 20%, maybe a bit higher.

  • gb2115
    gb2115 Member Posts: 553
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    I am normal weight so that is good. My RO pooh-poohed lymphedema risk from the radiation, but she pretty much pooh-poohed any possibility of ANY side effect. I'm still annoyed by that to this day, which is why if I have any issues with anything I'll just go straight to the medical oncologist or the surgeon.

    I am trying to slowly start using my arm more normally now that I'm a couple months out from radiation. I had a hard time with radiation, so was pretty inactive the entire time other than walking around the neighborhood when weather permitted over the winter. I work in the medical field, so I have to lift heavy-ish patient charts. I have been favoring my left arm for this but am now trying to use both arms a little more often. But I'm doing it in little bits (it's not something I have to do everyday either)---all of my work stuff is very much at my own pace which is nice. Opening doors with the affected arm, etc.

    I figure also I will take the workouts slowly but add more of the arm movements as time goes on. I am trying to be good with daily stretching too. I'm pretty sure I have impressive scar tissue from radiation and surgery going on in there---I can feel it--very tight.

  • erento
    erento Member Posts: 187
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    I was also super paranoid in the beginning, and this paranoia continued few months post-radiation. I had 13 nodes removed with radiation to axilla as well as chemo. I did a lot of research just prior to surgery and after and followed every rule in the book. BCO and this forum is a great resource, BTW. I'm very active and started exercise very gradually, saw a lymphedema specialist and got fitted with a sleeve and gauntlet to use for exercise and for flying. Avoided lifting heavy stuff and sleeping on my left side for nearly a year post-surgery.

    I still remain vigilant, but am not as paranoid. I'm back to my pre-surgery weights at the gym and fly without sleeve and sleep normally. Still avoid blood pressure cuff and injection, had to let blood taken once as the doc couldn't find a vein. I believe the highest risk is the first 3 years post-surgery, even though there is always a lifetime risk and vigilance is warranted.

  • erento
    erento Member Posts: 187
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    On injury, yes it's ideal not injure or let mosquitoes bite you, but I have injured myself many times and my cats scratch me from time to time. If this happens make sure that it doesn't cause infection. My lymphedema specialist recommended to have a little polysporin tube in my purse just in case.

  • gb2115
    gb2115 Member Posts: 553
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    Well, the mosquito didn't get me...THIS time lol. I guess I need to keep bug spray in my office...

    :-)

  • iz1999
    iz1999 Member Posts: 21
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    hello gb2115, I had chemo, lumpectomy, 17 nodes, 1 sentinel removed, 30 radiation treatments, was told to "baby" my arm, due to my high risk of lymphedema, my shoulder is freezing, now my oncologist and therapist tell me I have no limitations, so confusing. I use to work in a child care center(very hard work) they tell me I said ok to go back, I don't think so, anyone out there with any advice

  • erento
    erento Member Posts: 187
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    Ha! I've had mosquito bites as well. I think after a while you'll figure out what's safe and what's not, for example I heard blood draw is safer than injection. Actually, when I came out of coma in ICU the first thing I noticed was all the IVs attached to both my arms! And this was only a month post-surgery. I mean I had just survived a cardiac arrest and all I was worried about was my surgery arm! But thankfully, I didn't develop lymphedema. I don't know how much of this is true, but I remember reading that some people may have genetic predisposition to lymphedema. I'm not overweight, but I have the other two risk factors mentioned above and had IVs for 2 days in my arm and still didn't develop it.

    Saying that, remaining vigilant is a good idea.

  • hopeful82014
    hopeful82014 Member Posts: 887
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    gb, I understand. I was really concerned about this issue, especially when I ended up having 5 sentinel nodes removed plus radiation to axilla as well as elsewhere. I was referred prior to rt to a PT specializing in LE and she was very helpful. I'm slender and did a lot of free weights prior to treatment; she guided me through returning to that as well as the use of resistance bands. I attend an adaptive yoga group for cancer survivors, which was helpful in regaining range of motion, etc.

    At this point, 18 mo. post rt, I'm not nearly as paranoid although I am careful. I've done extremely long flights using my sleeve/gauntlet and had no issues. I play tennis, work in my garden, shovel snow. I do avoid bp and needle sticks on that side and have been lucky on the mosquito and cut issue - but I still tense up if I think I'm about to splash hot water on the hand, etc.

    In time you'll probably feel more relaxed about the possibility and won't feel as much that it's just another constraint on your life as a result of cancer. In the meantime, I hope it helps to know that it really does get better. Hang in there.

  • Eian01
    Eian01 Member Posts: 8
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    Congratulation! On the nodes removal you are progressing the right way. The "don't injure your arm" or "mosquito bite" thing are just myths with no scientific linkages. Workouts will be the best thing ThumbsUp

  • gb2115
    gb2115 Member Posts: 553
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    Thanks everyone! I will try not to stress over too much. I did another walking workout last night and my arm feels fine. I think I do have really tight scar tissue though, I will ask the oncologist about it at my next followup. I know you can't rub or massage radiated skin, so that's probably out, so I guess the stretching is the best thing, like the post-op exercises they give you. I do those every morning after I shower.

  • hopeful82014
    hopeful82014 Member Posts: 887
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    I would still be careful IF you do get a mosquito bite or similar; you don't want that arm getting an infection, so having tea tree oil or neosporin handy makes sense. Similarly, if you break your arm, the chances of problems developing are increased. That doesn't mean you don't live life - be body aware and, IF you have an injury, consider the issue of LE when discussing treatment.

    By the way, I found the Sansone workouts helpful in loosening up my arm, etc., but didn't start doing them again until a couple months after radiation and proceeded cautiously. At this point I still turn to them when my upper body needs to move after a long day at the desk.


  • gb2115
    gb2115 Member Posts: 553
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    I'm being really cautious with the arm parts of those workouts since I'm only 2 months out from radiation. Like taking them at half pace if they are fast movements, or only doing part of a set, while doing the entire leg part. Nothing fast or jerky on the arms. I like her workouts because you can either use the arms or not. It's still a good workout and more interesting than a treadmill walk. I picked up a couple of her DVDs from the library but might buy some to have. I used to use the FIRM DVDs pretty exclusively, but am not sure about using weights yet. I feel like it's way too soon. I will see the specialist again in June, but she's an OT. I wonder if they can put me in touch with a PT who knows what they are doing, for some structured guidance. I also see the MO in April, so maybe earlier.

    Do you know if they sell long gloves for gardening? Our backyard is pretty buggy but I want to plant some vegetables in our raised bed this year. Or I can send my husband back there to plant them! Maybe this is the year to get our yard treated, but I worry with our little girl running around and playing.

  • hopeful82014
    hopeful82014 Member Posts: 887
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    gb - there are longer garden gloves, generally marketed to rose aficionados. They usually go to mid-forearm (depending on how long your arms are, of course.) You could also keep a supply of insect repellent next to your garden gloves and apply just before going out to work in the garden (if you can stand the stuff!).

    I was really cautious the first summer after surgery, especially since I was going through rt at the same time. Fortunately it was a very, very dry summer here so fewer mossies than usual. Maybe you'll catch a break, too.

    This link might help you find a qualified LE therapist.

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm


  • minustwo
    minustwo Member Posts: 13,189
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    Sorry Eian - it is not a myth.

    Some people are lucky and never develop LE. Some people get LE after 20 years. You should all read all of the "step up speak out" site (link above) and talk to a certified LE/PT therapist about the realities of moving forward. Most docs don't know much about LE, or pooh pooh the questions. If you're going to do continual repetitive movements, you might consider sleeves. If you get a cut or a bite, clean it right away & treat with antibiotic ointment. Talk to your PT about sleeves for flying. Etc.

  • hugz4u
    hugz4u Member Posts: 1,818
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    I haven't read all posts but I ordered long sleeve bug shirts and sun protective shirts. I have bandaids and antibiotic cream where ever I go and use immediately. There is no need to live like we are in a nunnery, closed off to the world. Do most of everything just be a bit more careful. One girl horse rides and fly fishes here. Nothing gonna stop her!

    Yes with weightlifting start with one pound weights and move ahead when your use to them. That way you will know if you are going to flare. If your already lifting weight weeklyand handling it then proceed slowly and enjoy.

    Eian. Many people here have gotten into trouble with bites. Reason being is that we have a sluggish lymph or no working lymph system to protect us when bitten. So the bite CAN but NOT always fester and get infected really easy. If you don't run your garberator it gets backed up with waste and overflows. Same principal with lymph system. Except we can't just start up our ymph system by turning on a switch! ;)

  • summerangel
    summerangel Member Posts: 182
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    MinusTwo, I have read extensively on that site and my personal LANA-certified physical therapist has an article posted there. Hugz4u has it right. The more risk factors you have (the main 3 I mentioned), the more careful you should be, but there's no reason to freak out at every little thing and make your life miserable.

  • outfield
    outfield Member Posts: 235
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    I've had lymphedema for about 5 years now - it came on shortly after radiation ended. Mine is manageable with a sleeve and night garment, but I wear those very, very faithfully. I admit that mine is relatively easily managed, but I have to say, in retrospect, my intense fear of getting it was worse than having it.

    Some of the precautions have to do with avoiding injuries that can cause cellulitis. Cellulitis means infection of all the layers of the skin - both epidermis and dermis. Cellulitis is a double-edged bad sword. If a person already has lymphedema, they have a stagnant pool of fluid where a bacterial infection is more likely to take hold, so they are more at risk of cellulitis. Cellulitis is usually pretty easily treated, but it can be life or limb threatening. Both times I've had it, I've had fevers and positive blood cultures (bacteria grew out of my blood). Once got my IV antibiotics as an outpatient, once hospitalized x 4 days. On the other side, if a person without - but at risk - for lymphedema develops cellulitis, the infection itself puts more stress on the lymphatic system and can lead to scarring, either of which could increase the risk of developing lymphedema.

    The first "edge" of the sword I mentioned is well-known in medicine. We see it all the time when people have any type of edema. More often in the legs, but that probably has to do with the much larger number of people with any kind of edema affecting the legs vs. the arms. As far as I know, the second "edge" is more theoretical and anecdotal, but the mechanism makes good sense. I just don't know how, given how poorly lymphedema has been researched, there would be any exact numbers..

    The first time I had cellulitis, I'd been knowingly stupid - hot tube with an open wound. I was cold. The second time, I had no idea how I'd gotten it. My skin was perfect. I don't spend my life protecting my left arm from the slightest nick, but I do take reasonable precautions. I clean any nicks and take really good care of them as they heal (including the really deep stab wound in the meat near my thumb from being stupid in the kitchen). I wash my hands a lot and use moisturizer. I think more about wearing gloves if I might get nicked or scratched. I wasn't really living my life recklessly endangering my skin before my lymphedema, and it's not as if it's so hard to avoid that now. I really don't do much that differently, and there is nothing I have decided not to do because I was too afraid of breaking my skin. As for mosquitoes - there aren't many where I live, and they don't seem to bite as much through the sleeve as regular skin, so I haven't really had to deal with that much. When I travelled thorugh the SE last year, I kept tubes of a mild steroid and topical antihistamine with me to put on any bite right away. We also used some natural bug repellant - I can't remember the name - that seemed to work OK and didn't smell like DEET. Honestly, this is likely what I would've done without lymphedema. I can't stand mosquito bites so I go up against them armed. Most of all, I wouldn't worry about it that much. A mosquito bite is very localized inflammation, and if you don't scratch the heck out of it and get it infected, it's not as bad as getting a roaring infection in your arm. The chance of developing lymphedema after a mosquito bite is can't be zero, but it's also probably not that high.

    As for activity: different sources are going to say different things because there was a major medical study that completely changed what women are told roughly 8-10 years ago. Before that study, women were told basically to never do anything with the arm. The study did find that an exercise program that gradually increased in intensity did reduce the risk of lymphedema, and since then that finding has been replicated. The problem is, not all people putting out a reference guide use the most up-to-date information, they just copy off what they had before. Or, they're someone who is cognitively rigid and has trouble integrating new information that doesn't confirm what they already believed. It's exactly the same as instructions about exercise for women who are pregnant: those changed years ago but women still get all all sorts of different advice. Lifting, indoor rock climbing, playing basketball, swimming, soccer, carrying really heavy boxes - none of those have done anything to my arm, but I did work up to it. Just do simple exercises with very low weights and gradually increase the weight and the reps. That way, you can avoid making the arm feel like it's been pushed to the max or getting it really pumped up. I had already developed lymphedema when I started going back to exercise besides walking (chemo laid me out flat), but what I did with my arm wasn't that different from what I did with my whole body to get myself back to strength and activity again. Can't your therapist give you something specific? You might have to change how you exercise as you recover, but you should be able eventually to go back to what it is that you love.

    I hope this is helpful, and that you never get lymphedema.




  • gb2115
    gb2115 Member Posts: 553
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    That is very helpful! I'm thinking of calling my therapist for some more specifics. I see her again in a couple of months for measurements, but don't really want to wait that long. I might see if I can pop by and see her when I go for my oncology follow-up in a couple of weeks.

    You know what I love? Aerobic dance, like Zumba and things like that. I have a hip hop cardio DVD that I really miss doing. Maybe someday. I had to stop doing Zumba because of a lot of ankle problems prior to my cancer diagnosis, so I don't know if getting back in the game is in the cards for me.

  • natsera
    natsera Member Posts: 39
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    This is not a pep talk, because I'm pretty much in the same place as you. I had my surgery on March 7, and the BS referred me to the lymphedema clinic, although I have no signs of it so far. So she read me the whole riot act, and told me to get a sleeve because I'm flying to Israel in May, and she said that the changes in pressure are a risk. Plus the thing about not injuring your arm -- I'm diabetic, and I typically test my blood on the right hand, which is the side the breast cancer was on. So they told me not to test on that side, but geez, I've been doing it for 25 years already, and the habit is hard to break, plus I play string instruments, and want my left hand to be as natural as possible, with no scars or calluses other than what the instruments cause. And it's hard to figure out just where on the finger to test. So I'm bummed.

    On the other hand, I REALLY don't want to develop lymphedema, and just don't know what to do. How much can the advice (rules) be bent? I do understand the need to prevent infections, because the damaged lymph system might not be able to handle the increased liquid volume, but what really is or isn't a significant risk?

    If you get any answers, please share them with me!


  • cookiegal
    cookiegal Member Posts: 527
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    I didn't read the whole thread but, after living with LE for 7 years this is what I believe.

    Some people have weaker lymph systems, some have stronger.

    This accounts for why some will get LE with one node and some won't with 30.

    If you have a poor lymph system at some point you will get LE, there are lots of different onset triggers, but I really think sooner or later something will trigger it.

    So LE SUCKS, but try not to let the fear control your life.

  • ruthbru
    ruthbru Member Posts: 47,237
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    Here is an old post I wrote on LE (on an exercise thread, which is why there is so much about exercise in it), maybe it will be helpful for you:

    I had 11 lymph nodes removed, so this (LE) has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Here are some thoughts & tips I came up with.

    First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad 'luck'.

    That being said, there are many 'little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):

    • No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway). There are some really pretty ones out there that look like jewelry (I have a good website if you want it)
    • Wear gloves when doing yard work, gardening etc.
    • Wear sunscreen when out in the sun, bug spray when out with the bugs
    • If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
    • Be sure to switch arms when carrying your purse, hauling around anything heavy, dragging luggage etc.
    • Be careful about saunas, I avoid them, and also manicures and massages (on that quadrant of my body anyway).....not everyone does, but that's just me
    • Keep a healthy weight
    • Keep hydrated, limit alcohol
    • Don't wear tight rings, watches, bracelets on that arm (when flying, I put my rings on my other hand & leave them on that side fro a couple hours after I land or don't even bring them along at all)
    • Also, be sure to keep well hydrated when flying, move your arm around a lot, make fists etc. get up & walk around the cabin (which won't be a problem if you are well-hydrated because you will have to go to the bathroom!), if someone wants to help you hoist your carry on & off the overhead, let them.....maybe think of checking heavy bags....
    • When exercising that arm; start very slowly, take your time...build up weights very slowly...don't skip levels...don't do too many reps in one session. Mix up your exercises, don't work the same muscle groups every day. You may want to work with an experienced trainer (or PT) to help you construct a balanced program.
    • One thing I do want to add; after my surgery I was scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little 'normal' soreness...because anytime you exercise a part of your body that you haven't been using for awhile, of course, it will feel sore. That made sense to me, and gave me 'permission' to get moving.

    The list above was my original post, now I will add a couple other thoughts. I understand where you are coming from because in the beginning, I think I was almost as afraid of getting Lymphedema as I was of actually dying....yikes. But a couple things happened; one was time passed without me developing LE, and second is that I got to know several people who had developed LE and saw that even though it added something that was a hassle to their lives; they kept on living, exercising, traveling.....doing all the things that make life enjoyable.....despite of it. So, be mindful but don't let the thought of it rule your life. If it doesn't happen, you will have wasted all that energy worrying for nothing, if it does despite sensible precautions, then you will deal with it at that time.

  • ksusan
    ksusan Member Posts: 461
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    natsera, for what it's worth I've had multiple doctors including oncologists tell me that while they'd prefer I use the non-IDC side for glucose monitoring, they all say that finger sticks shouldn't cause lymphedema.

  • natsera
    natsera Member Posts: 39
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    Thanks, Susan. It's good to know because everyone has told me not to use that hand. But I think it's worth it to use it and it's nice to have your confirmation.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    I'm T2. I have LE down to my fingers, but not the fingers themselves. So I use them for glucose sticks. It's my understanding that a puncture in the LE affected part is what may cause problems.

    I also managed to break my LE wrist. The cast was uncomfortable at times, depending on the amount of swelling. But I got through it.

    I've had assorted cuts, scrapes, bug bites on that arm. Usually it oozes fluid for a day or two. I watch very closely for signs of infection but nothing yet.

    I don't baby it. I live my life.

  • hugz4u
    hugz4u Member Posts: 1,818
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    natsera. I also had a doc laugh in my face telling me I wouldn't get lymphedema when I said I'm afraid of Le. Well here I am.

    I do blood sugar in non le upper arm with no axillary nodes out. Although I had dble mast I even watch that arm as nodes in breast are gone and even one node can out can be a risk although very low as I still have functioning axillary nodes.

    Yes I believe the readings in the upper arm are not as accurate as finger but I take that into account.im prediabetic and swing between low and high and I have learned what my body feels like. I watch diet like a hawk and exercise madly so I can almost guess what my bs is. That said being diabetic would be harder to judge and so accurate readings would be a must.

    There was a recent study out there that all docs are going with that says needles are ok but our wonderful Kira who is too busy debunking this study to post lately is actually a doc with le and says it's faulty. Google dr Judith Nudelman and type in lymphedema next to her name. You will find her podcast debunking.

    Whenever you have a puncture germs can get in and we don't have a perfect lymph system anymore to clean them out. This makes for a potential problem but doesn't always happen. So we have to watch out.

    Docs spend under a hour learning about lymph system in med sch. That doesn't give them much experience and so when they think lymphedema they are thinking of huge distorted arms for a diagnosis not people like me with a normal size arm with le.

    Don't be afraid to live just take precautions like dressing your scrapes and wounds and watch for signs of infection. Ok I got to go trail run in the woods now. I also wear a bug shirt during bug season as a caution. works great! See you can still live just be a little more cautious. Well maybe I might not sky dive

  • gb2115
    gb2115 Member Posts: 553
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    I don't think they should laugh off the LE risk. My rad onc did that too, with oh you won't get it, it mostly happens along with obesity. Well, they should never say you won't get something, because they really don't know. And I think it's a genuine thing to be fearful of.

    I will be in a situation where there will definitely be sun, and possibly mosquitos, this weekend, so I'm gearing up for that. Skipping this would definitely not be living life (there's something we've already told our little girl we're going to do, so we're doing it), but I can't say I won't be worried about it. Sunblock and bug spray, but for sure I'll swelter under a sweatshirt in order to keep that arm out of the sun. It's supposed to be hot too. I need to buy some of those UPF rated shirts, or a parasol or something.


  • glennie19
    glennie19 Member Posts: 4,833
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    hugz: what kind of "bug shirt" do you wear? Would you share the brand name? Thanks.

  • hugz4u
    hugz4u Member Posts: 1,818
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    Glennie. Columbia brand shirt. I belief it's sun protection to but have to check label to make sure. I got in steel blue colour because being outside it gets dirty cuffs and I don't want to be washing out the bug spray just to keep cuffs clean so I chose darker colour. I think it's good for 70 washes so I will have it for a long time. Works!

    Something even better is I sent away some of my cloths to the company called Insect shield were they wash your own cloths to make bug resistant. Repels ticks ants mosquito flies chiggers midgets for 70 washings. I also sent a light weight big scarf that I can use as a blanket protection when outdoors lounging if I don't have bug cloths on. It's a good bang for my buck. I keep in trunk of car or unexpected outdoor bug time.10 dollars each to get done. I hate bug spray so this is the next best thing to do. People that work in the jungle use this company so it's proven to work.

    BTW dear le friends, I'm not saying not to feel your fear even I have fear of worsening le but we can't cage ourselves in a germfree bubble. My particular fear is flying with LE. Maybe one day I will bite the bullet and do it. Meanwhile I'm going to keep doing what I like even if I have to scale back a little. I figure one day I might be in bed with this dang cancer so I'm not going to miss out now.

    GB2115. It's so unfortunate that the docs we trust with our lives don't take our concerns seriously. I ditched my bad doc and found one that wants to learn about LE. She is amazing

  • chisandy
    chisandy Member Posts: 11,407
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    My BS’ NP, even before surgery, insisted on measuring my arm & hand for an Rx for a sleeve & gauntlet. We didn’t know how many nodes I would have removed—but she said that even with as few as 2-4, with an SNB the lifetime risk could be as high as 20%. My instructions were to wear compression for all flights over 4 hrs. (don it an hour before take it and remove it an hour after landing). Been to Europe four times since radiation, wore compression as directed, had no problems. Have yet to take a domestic flight >3 hrs, so I don’t bother to wear compression (though I do bring it in my carry-on tote). And this time, for Easter brunch on the 95th fl. of the Hancock, the elevator ride didn’t give me any swelling. Because I had a forearm cord after radiation, I went to an LE doc, who diagnosed me as Stage 0, or “subclinical:” measurements didn’t indicate LE but since I described cording symptoms, he prescribed 6 PT sessions. Helped immensely—I learned how to do manual lymph drainage massage.

    I wear compression if I’m playing guitar outdoors on a hot day, and every time I go to the gym, even if it’s just for cardio. Also for long bouts of repetitive motions such as scrubbing, raking, etc. I have several sets in various colors & patterns, so with rotation and washing & drying after each use I haven’t had to replace them—they still have their full “mojo.” And whenever I am not wearing long sleeves, I wear sunscreen on my arms; and during the warmer months, a natural & organic insect repellent. I also now hired a visiting cat groomer to cut my kitties’ nails periodically to lessen the chance of a scratch on my R arm. I even use a letter opener, lest I get a paper cut opening envelopes.

    By contrast, my friend had a BMX (with SNB) for DCIS in one breast and ADH in the other. When we asked about taking BPs & needle sticks going forward, both the surgeon & nurse-navigator dismissed her concerns. I, however, am taking no chances—I wear a medical-alert bracelet (faux-Pandora) with the pink alert symbol and the “Lymphedema this arm—no needles/BP” message, along with my three drug allergies & contact info on the back. I'd always pooh-poohed Pandora charms until I began getting them—now I have that medical ID plate plus lots of autobiographical beads & dangles, and it’s a conversation-starter.