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Lymphedema threat: are we ever out of the woods?

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13

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  • minustwo
    minustwo Member Posts: 13,116
    edited June 2022
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    I'll be interested in the answer since I have breast & truncal LE.

  • mumuriri
    mumuriri Member Posts: 26
    edited September 2022
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    Re: Lymphedema risk and SLND -- I'm having a lumpectomy + SLNB in October. Regarding the risks of lymphedema, afterwards do I always need to wear a compression sleeve + glove on that arm whenever I fly? Or does that only apply if you are getting an ANLD (much higher risk for lymphedema AFAIK)?


    Just trying to figure out what precautionary changes I have to make after SLNB and radiation (breast not armpit probably).

  • laughinggull
    laughinggull Member Posts: 512
    edited September 2022
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    Hi Mumuriri,

    Compression sleeves are prescribed for people who have developed lymphedema. Not something one wears as a precaution, on board of planes or out of planes. So you dont need to worry about it.

    What I would do in your case is making sure you get measurements from a certififed lymphedema specialist, prior to surgery. This is to have baseline measurements, becuase if you develop a mild case of lymphedema, it may be hard to detect if you dont have a prior measurement.

    Then the usual precautions is not to get blood pressure measured on your cancer side, not IVs or punctures, be very careful about any wounds that could get infected.

    LaughingGull

  • ruthbru
    ruthbru Member Posts: 47,026
    edited September 2022
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    Mumuriri, here is a post I made a number of years ago that may have some helpful tips. (I posted it on an exercise thread so there is quite a bit about exercise in it).

    I had 11 lymph nodes removed, so lymphedema 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
    • 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 this, 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)
    • 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 a heavy bag (that's what I do)
    • 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.
  • bcat34
    bcat34 Member Posts: 12
    edited September 2022
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    Hello,

    Great topic and had to add my own experiences.

    I was diagnosed in 2012 and had ALND. I do wear a flight sleeve (formally fitted by LE specialist) and gauntlet on all flights preventively. I was also told by my LE specialist to raise the arm in the air and open and close my fist a few times each flight and to keep the sleeve on for 1/2 the flight duration afterwards before doffing.

    I also recommend gloves for housecleaning tasks, and for filing at work. And I’ve got polysporin in my purse in case anything at all happens on my affected arm or hand and try to prevent bug bites, sunburns etc. No blood pressure checks or vaccines on the affected arm. A friend was pulling poison ivy by hand at the cottage and that was her trigger. Pre-cancer not a big deal for her. I think she only had sentinel node biopsy. She had not heard any of the advice I received that I continue to do. Maybe I’m being too cautious. My fingers do swell a bit on hot humid days but otherwise no signs of lymphedema right now.

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2022
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    Like Ruth - most of my prevention activities are proactive. Original BMX surgery only took sentinal nodes, but I still had minor LE on one side. Second surgery (ALND) & radiation left me with breast & truncal on that opposite side.. There's lot so debate about what works, but I do NOT want the LE to progress down my arm. Hence I do most of what Ruth does - mild compression bra 24/7, ALWAYS gloves & gauntlets when flying and a heavy duty compression bra on on the plane and an hour afterwards.

  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    Minus good point about the compression bra for air travel I hadn't thought of that.

    I hope to add some pointers if I get any from the lymphatic seminar coming up.

    I do acupuncture on my affected arm once a month. We are very careful with wiping the area prior to placing the needle and while I cannot tell if it reduces my mild swelling, I do get assistance with pain relief.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited September 2022
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    New to Lymphedema. Started in April and am still learning to manage it. Doing the massage daily, using a pump daily and a sleeve during the day and tubi at night. Being followed by the team at Sloan-Kettering. Would like to investigate surgery.

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2022
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    Welcome ZJ.

    Rah - I sprang for an expensive Belisse compression bra for flying. It's the only time I use it so it's lasting very well.

    And LW - just remembered that the Belisse bra has velcro on the straps so they can be made shorter or longer to suit your torso. It was considerably more expensive than the Wear Ease/Sydney, but also has hooks & closures in both the front & the back.

  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    Thanks Minus I will check it out.

    zjrosenthsal sorry to hear you developed lymphedema. Hope you are able to check into the surgery and if so that it is effective for you.

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Thanks -2! I don't think I have any interest in a compression bra; seems like compression causes more problems than it helps with me. I have found that going braless and wearing a "shaper tank" in a size smaller than I normally wear works pretty well, and I bought a swell spot for under my axilla.

    ZJ--sorry of your diagnosis; I have recently found that I have LE, too. I've had the LVA bypass and considering additional bypasses at some point. Report back if you go forward with surgery. Good luck.

  • ava55
    ava55 Member Posts: 42
    edited February 2023
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    Hope anyone can help. I have a lump under my arm near Brest which had bilateral mastectomy. It feels like fluid and is warm to touch. Could this be lymphedema or something more sinister?

    Thanks

  • maggie15
    maggie15 Member Posts: 924
    edited February 2023
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    It could be lymphedema or an infection. I would have it checked by a doctor.

  • ava55
    ava55 Member Posts: 42
    edited February 2023
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    Thanks Maggie I only had mammogram last week and got the clear but they don’t do it on the Mx breast so this concerns me that there is a new problem.

    How is an infection different to Lymphedema and if it is lymphedema does that mean I have it forever now?

  • maggie15
    maggie15 Member Posts: 924
    edited February 2023
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    Hi Ava, If it is an infection the heat and swelling are caused by inflammation due to bacteria and antibiotics should clear it up. If it is lymphedema it is usually there for good. There are ways to manage lymphedema, especially with the help of an LE therapist. Mine is in my breast and varies a bit but is under control. If LE is in the armpit the lymphatic massage and exercises taught by the therapist help. If you need a compression garment there are compression t-shirts which work for the armpit.

    While your PCP can prescribe antibiotics they might refer you to your surgeon if they thing it is an infection related to your reconstruction. If they think it is lymphedema your bc team would be able to refer you to an LE therapist. It's annoying how new problems appear right after you have seen your doctor but it does happen. I hope you can get this sorted out soon.

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2023
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    Ava - It could be LE, but also an infection. I'd definitely push for more screening. I had a BMX so no mammograms for me either. I did have a breast Ultrasound ever year for a couple of years and still get one every two years. I also got a breast MRI at 2 & 5 years. If the ULS shows no problems, that's all I need - but I won't skip those.

    It's important to be proactive. A PCP could do blood tests for infection, but I'm not sure a PCP would be able to correctly diagnose LE. It's a skill lacking even in many breast surgeons. Actually mine was diagnosed by my radiation oncologist after the surgeon said 'pooh pooh'. I'd look for a breast specialist.

  • ava55
    ava55 Member Posts: 42
    edited February 2023
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    Thanks Maggie and Minustwo yes agree and it is strange to have them focus on the other breast and do nothing with the Mx one especially as that’s where the cancer was found. Will push to see what I can do. Hope it’s not a sign that something is back.

  • ava55
    ava55 Member Posts: 42
    edited February 2023
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    I am now really worried that this swelling is a recurrence. At the time my DCIS was extensive 8cm and while they got clear surgical margins post op (one year ago) they did uncover 5mm of IDC. It was too small to process for oncotype so no chemo but now I am afraid that a rogue cell is there. I have been doing a lot of swimming so this could have caused something. But I am now back to worrying that this nodularity is a recurrence especially given the position of where it is (between my reconstructed breast and my armpit). And if it is it will have been growing for a full year. What you think? Really appreciate any updates or similar experiences on this one. thanks

  • ruthbru
    ruthbru Member Posts: 47,026
    edited February 2023
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    You have to see your doctor. Anything we could say would be mere speculation.

  • ava55
    ava55 Member Posts: 42
    edited February 2023
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    thanks I will ring tomorrow just wanted to check if anyone else had a similar problem, they are closed today so am driving myself mad worrying

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2023
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    I agree with Ruth. We can figuratively hold your hand, but can't possibly diagnose. Please do some back & let us know what the doc says.

  • ava55
    ava55 Member Posts: 42
    edited February 2023
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    Hi again,

    I emailed my consultant surgeon on Sunday (yesterday) and he so kindly got back to me that same evening with an appointment for today. Took so much stress out of it knowing that and very good of him as he was in surgery all day.

    He didn’t think the swellin was a cause for concern after checking it thoroughly. He recommended an ultrasound to give me peace of mind so fingers crossed this will be ok.

    Thanks for all advice as it helped to ask more questions in terms of being proactive.


  • ruthbru
    ruthbru Member Posts: 47,026
    edited February 2023
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    Very good news, ava!

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2023
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    Great Ava. Please let us know after you get the ULS results.

  • maggie15
    maggie15 Member Posts: 924
    edited February 2023
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    Ava, Glad you are getting an ultrasound to be sure.

  • mavericksmom
    mavericksmom Member Posts: 1,158
    edited February 2023
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    Ava, after reading the former posts, I too am glad you are getting the Ultrasound to be sure..

    Tomorrow I have my pre-surgical appointment for my exchange surgery in a few weeks. My surgeon wants to do mapping of both arms due to lymphedema. in my left arm, and minor swelling in the right arm, at the same time. I had 24 nodes removed from left side in 2003, and got lymphedema immediately after surgery. I only had 2 nodes removed from right side during 2022 mastectomy, not sure if I have any lymphedema in right arm. All nodes were negative for cancer.

    To prepare for my visit, I found amazing Youtube videos by the Lymphatic Education and Research Network (LE & RN) They discussed the different surgical procedures to help lessen the lymphedema and explained who might benefit from the different types. So Much Information!!! One of the videos was presented (2008, I think) by Dr David W Chang, who I think is from Chicago. The other, made about 4 years ago, was presented by Dr. Edward I. Chang of MD Anderson.

    Honestly, I'm feeling overwhelmed. As of now I plan to go ahead with the mapping, but only if my insurance will pay, and if there is useful information to be gathered by doing it. As for the surgeries, right now it is a definite no due to being considered experimental surgery by my insurance, (Medicare Advantage) but even if my insurance covered the procedures, the one that my surgeon was talking about involves liposuction and that means wearing garments 24/7 for the rest of my life. I don't think that is something I can commit to.

    Honestly even though my lower left arm is twice the size of my right arm, I haven't worn garments since 2010, my arm has not gotten worse, even after having complete reversed shoulder replacements in both shoulders and two mastectomies three years apart! It is heavy and aches sometimes, but I have had this for 20 years, so I am used to it. Part of me feels it I am better off leaving well enough alone.

    My top goal after I recover from surgery, is to exercise and lose a significant amount of weight. I have concerns about the Letrozole I am on (again) raising my cholesterol, but my cardiologist will stay on top of that. I just want to be as healthy as possible without risky surgery so I can enjoy life!

  • ava55
    ava55 Member Posts: 42
    edited February 2023
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    thanks all and Mavericksmom, Best of luck with next steps. I do think that the information can be overwhelming too and the decisions that you have to make but you seem to have a positive mindset which is half the battle.


  • minustwo
    minustwo Member Posts: 13,116
    edited February 2023
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    MavricksMom - I hope LW will weigh in, since she did have some of the newer procedures. Personally, I have mostly mild breast & truncal LE. I do wear a light compression bra 24/7 & refuse any sticks & pricks. Although I REALLY don't want progression to my arm (s), I usually only wear gloves & gauntlets when I'm flying. Around every 2 years, I do go to an LEPT to break up any new cording & learn any new techniques. Maybe it would be good to have comprehensive measurements made of both arms before your next surgery? I wish I had known to insist on that before my first surgery in 2011. At least I have a base line now. Hope the appointment goes well.

  • mavericksmom
    mavericksmom Member Posts: 1,158
    edited February 2023
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    minus, thanks for the recommendation. You are smart to try to do everything to prevent it from going into your arms! I too avoid BP and blood draws on my left arm! I had comprehensive measurements prior to my mastectomy in October. My surgery is two weeks away and the hospital usually calls the week prior for any pre-surgical testing. When they called before my mastectomy, they gave me an appointment with the LE therapist. My plastic surgeon also specializes in lymphedema. He is fantastic!

    I ordered a book via Amazon by Chuck Ehrlich, MS, MBA who was also featured on Youtube for the Lymphedema Educational and Research Network, where he presented his talk "Eating to Starve Lymphedema and Lipidema!" I will post after I have a chance to read and review the book.

  • lw422
    lw422 Member Posts: 1,399
    edited February 2023
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    Hey y'all. MM, I think it's good that the surgeon will map the lymph channels during your surgery. Ask if they use the green dye; my surgeon did and much to my surprise I had bright green poop for a couple of days after surgery!! It was St. Patrick's Day in the toilet! I believe the liposuction procedure is called the "Flying Squirrel" and there's a thread here somewhere. I agree with you, I cannot commit to wearing compression 24x7. I've mentioned before that I had a LVA bypass during my mastectomy but I got LE anyway.

    Honestly, I don't know how successful any of the surgeries are in the long term. They are all fairly new and there aren't a lot of people posting after a few years with the procedures. It's kind of a crapshoot anyhow, just like trying to guess who will or will not get LE. People have full dissections and don't get it, while some people have 2 nodes removed and they DO get it. I suppose a lot has to do with individual anatomy among other factors.

    I was considering having another bypass now that I've got full-blown LE but I'm not very enthused about it. I am a non-compliant as far as compression; that stuff seems to make my arm worse. I can wear the Solidea sleeve but that's as far as I'm willing to go with it. I do my stretches and MLD and go about my business.

    Hope everyone's doing well. Hey -2!!