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LE risk according to surgical team, my fear regardless

mumuriri Member Posts: 26
edited November 2022 in Lymphedema

I'm about 6 weeks out of surgery (lumpectomy + SLNB where they took 2 nodes), have a BMI over 30 (which is higher risk of lymphedema):

I have started doing my daily brisk walks/slow jogs again (35 mins every day). I'm freaking out a bit about the possibility of getting lymphedema because I keep getting mild swelling in my armpit area/a little around the back part of the bra strap area after I work out, and I called my surgical team.

The nurse assistant to my surgeon (very good doctor at one of the top 4 cancer hospitals in the country) called and said because I only had 2 nodes out and I'm 6 weeks after, at this point there were absolutely no restrictions on what I can do, including (I asked specifically) bowling, tennis, fishing, weight lifting. No restriction on flying, blood pressure or blood draw/injections in that arm. She said to be careful and watch the swelling after exercise, but that it's post-surgery swelling and it might take some time to die down -- she said everyone is different for how long this type of swelling goes on. She said the risk of lymphedema is super low and was unconcerned when I pointed out that I have a BMI that puts me at higher risk. At my first meeting with RO (different local hospital) she also said I had a very low/almost non-existent risk of lymphedema with just 2 nodes out and was also unconcerned when I raised the question of risk -- I start radiation on monday.

Is she right? Or should I try to find a certified lymphedema therapist to ask these questions? Should I ask the lymph therapist at the local hospital I'm getting radiation at, or seek a therapist at the top-ranked NCI I got surgery/my MO is at, in case their information is more up to date?

(Note: I'm a little leery of the nurse assistant's recommendations, because I had also asked about the abdominal cording I got (I think it's probably Mondor's) and she said "oh that'll go away in about a week just take some aspirin" which is completely contrary to what I've read on Mondor's lasting several weeks to several months))

When I look through these forums especially here in the Lymphedema section, so many people are saying that even with SNLB one must wear a sleeve when flying to be safe, and not lift anything heavy like luggage or play any sports like tennis or bowling because it could trigger lymphedema at any time -- even a mosquito bite.

I already have severe anxiety prior to BC and this fear about lymphedema is spiking it to unprecedented heights, I'm scared after each time I work out and I'm having trouble sleeping (and keep checking my fingers/arms/armpit/back and asking my husband to check also every day multiple times a day). <-- an article on dragon boat racing with BC survivors and how 2 doctors think the upper body repetition thing is a myth for causing lymphedema.

I don't know who to believe at this point?


  • lw422
    lw422 Member Posts: 1,410

    Sorry you are having anxiety over LE; I was the exact same way after having a full node dissection and a lymphovenous bypass. I was doing OK until about a month after I finished rads, then I started noticing some slight swelling in my lower arm on the affected side. Just like anything else, "low risk" does not mean "NO risk," so we are always at risk for lymphedema. I think many medical professionals tend to downplay the possibility because they really have no clue about who will or will not get LE.

    I'm sure you know after reading posts on the LE forum that several people have had a minimal number of nodes removed and still got LE. Some have had zero nodes removed but had radiation treatment that caused LE. It's a crap shoot for sure, but try not to obsess about it. (I know that's harder than it sounds because I was totally freaked out with worry.)

    So far my mild lymphedema is manageable, and I have calmed down a lot. I keep up with exercise and stretching, and don't baby my arm a lot. I think using the arm and keeping the muscles moving helps move out the lymph. I still take hot showers and can't tolerate the sleeve so I don't wear it. I sleep with my arm elevated on a couple of pillows and I keep an eye on it for any changes. My clothes don't fit any different and life goes on.

    It's a good idea to consult with a certified LE therapist, to learn self care if needed.

    So even if you do get LE, it's not always as horrible as you imagine. I'm grateful that treatment gave me more years to live, so dealing with LE is just something I have to do. Good luck to you and I hope you don't get LE... but it's manageable. Hugs and best wishes.

  • weninwi
    weninwi Member Posts: 762

    I had lumpectomy and one node removed. I no longer remember how soon after surgery I developed mild lymphedema, but it was primarily in my breast....not in my axilla or arm. I'm normal BMI. Thankfully I was offered a referral to a certified lymphedema therapist and at my cancer center this specialist was in the OT Department. I definitely benefited. At each appointment the therapist spent about 15-20 minutes doing lymph massage and working on the lumpectomy scar tissue to soften it up - that hurt. But equally as important I was given instructions for self-lymph massage at home. This definitely helped me keep the problem under control. I've never needed a sleeve.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,059

    I vote for a visit to an LE therapist. Besides advising on numerous LE related things, they can take measurements of effected areas to monitor changes/swelling and treat appropriately if needed. I am 11 years post surgery and have very mild and manageable LE in my upper arm . I also have LE in my leg from rads to my bone met. Regardless of how few or many nodes are removed, LE is always a possibility. Take care

  • jelson
    jelson Member Posts: 622

    I also encourage you to visit an LE therapist to learn all you can so you can confidently take appropriate precautions while enjoying your life. I attended a presentation by an LE therapist at a local BC conference many years ago. She explained risk and that even with just a lumpectomy and radiation - no lymph nodes removed - my risk was not 0 and the risk did not abate over time. 12 years out - I maintain the basic precautions - no blood draws, no shots, no bp on that side. I paddled on a dragon boat team for six years, continue to paddle a kayak and do weight lifting exercises.

  • maggie15
    maggie15 Member Posts: 1,076

    I second all the advice you have received from other posters. My surgeon told me not to worry about LE restrictions on my right (cancer side) because I only had SNB (3 nodes.) After surgery my lumpectomy breast was a cup size smaller so she set up an appointment to schedule a reduction on my other side. In the meantime I had rads and ended up with the right a bit bigger than the left. At the next appointment the surgeon was surprised when she examined me and told me that I must be one of the unlucky 5% since it was LE in my breast. Needless to say I did not have reduction surgery, visited an LE specialist, and don't allow any BP, injections or blood draws in my right arm. The LE has stayed in the breast and has been reduced a bit by acupuncture so that I am now almost even. I use my arm normally but am careful not to aggravate it. I don't know how they can get away with saying a 5% risk is no risk.

  • ratherbesailing
    ratherbesailing Member Posts: 129

    i think you’ve gotten great advice here. Yes, it is possible to get truncal lymphedema after surgery. I did, and I was not overweight. But try not to worry too much yet. I don’t believe radiation made it any worse. And learning self-massage from a LE therapist has kept it well under control.
    When I was first diagnosed the therapist basically told me I could do nothing for the rest of my life. But research has shown that exercising and keeping that arm strong is the best thing you can do (go dragonboat racing!) So I swim, lift weights, and shovel snow without problems. I just am careful to warm up before taking on heavy weight.

    So, yes, go see a lymphedema therapist. You deserve oeace of mind

  • ruthbru
    ruthbru Member Posts: 47,241

    Mum, it is always a good idea to check with an expert if you have any questions at all! (I believe the latest recommendations say that you can get shots, blood pressure readings etc. in your affected arm, but I am not comfortable doing thought is why tempt fate when it's just as easy for them to use the other arm).

    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 (I am adding this note as I type right now in 2022......I believe the latest recommendations say that you can get shots, blood
      pressure readings etc. in your affected arm, but I am not comfortable
      doing thought is why tempt fate when it's just as easy for
      them to use the other arm).
    • 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.
    • Get into/keep in a healthy weight range
    • 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
    • When exercising that arm; start very slowly, take your 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.
  • mumuriri
    mumuriri Member Posts: 26

    Thank you all for your advice.

    I got referred to a LANA-certified therapist at the same clinic that my RO is at because of my questions/anxiety and I wanted to get my arm measured before I started flying / weightlifting / sports again after my radiation is over.

    I'm ambivalent about what she told me. She said because they don't know what causes lymphedema, just what increases the risk, that even though I don't have lymphedema now (2 nodes out from SNLB), I should wear a compression sleeve for basically every activity beyond daily: like gradually increased weight lifting, bowling, tennis, flying (even short domestic flights), dragging luggage, pushups, and ANY type of exercise like aerobics or yoga or pilates etc. When I asked about vacuuming she said no unless I did it for 3-4 hours (makes no sense since it's just as taxing as some of the other activities I asked about).

    She had a brochure with a local store ready for me and kept talking about how that store could fit me for other specialty stuff like bras (I've only had a lumpectomy which she knows) as well. She insisted on sending a script to my RO to send to the store even though I told her I wouldn't be flying for several months and would be losing weight during that time -- "they're stretchy so they should still fit" (even though the websites I've seen say you need to be refitted every 6 months or w/e to ensure it's doing good/not harming you by improper compression).

    She mentioned nothing about compression garments for bra/truncal area or the possibility of LE in those areas.

    I went from being moderately concerned about the risk to being confused/angry now because this LANA-certified therapist (she's young, she got her certificate in 2020 according to clinic website) is telling me I basically need to sleeve up for everything outside of normal daily activity even though I don't have lymphedema. She said not to get blood drawn / blood pressure / vaccines on that side either, when all 3 of my doctors (SO, RO, MO) have said it's perfectly fine for me to do so.

    I'm angry because I feel like this is one more thing that makes me less capable of living a regular life, as someone who regularly hefted very heavy things around without a thought, bowled with a 15 lb bowling ball in leagues, and would carry huge sacks of groceries 15+ minutes walking instead of driving home -- now I can't do that, or at least need to wear/take care of a medical sleeve for stuff I never spared a second thought about before. It makes me desperate and angry and depressed and hopeless.

    So who is right? How much of this is outdated information? She told me not to sleep in the compression sleeve, but in order to do long-haul flights (e.g. from US to Australia/NZ or Asia) I will be sleeping for part of that 14-18 hour plane ride, so what on earth do I need to do? What about the studies that said flying while wearing a compression sleeve when you don't have lymphedema may actually be bad / help cause lymphedema to start?

    Should I get a second opinion from a therapist recommended by my doctors at NCI? (I am getting radiation at a local clinic not affiliated because it's closer)

  • lw422
    lw422 Member Posts: 1,410

    Mumuriri--most of us totally understand the "emotions of lymphedema." It's the most frustrating thing to find that we lived through cancer treatment only to be served the shit sandwich of LE. (Sorry for the language.) I have seen 3 different LEPT's... all certified, all employed at MD Anderson, and all practically worthless. The first two basically did nothing except measure my arm and demonstrate stretches/exercises without ever laying a hand on me.

    I have come to the conclusion that LE remains a medical mystery for all doctors and therapists. We are basically left to deal with it ourselves, mainly by trial and error methods. Even the "revolutionary" surgeries for LE are a crap shoot, and people who have them still have to deal with sleeves, exercise, etc. I'm still new at this and have been trying to figure out "my" way to deal with it, but the frustration remains.

    I have learned a lot from reading this forum and also from the book "Lymphedema, A Breast Cancer Patient's Guide to Prevention and Healing," by Jeannie Burt and Gwen White.

    As far as when to wear a sleeve for preventative measures, I understand that for flying the sleeve should be worn for the entire flight and for a couple of hours after arriving at your destination. Also wear the sleeve for strenuous exercise (whatever that means). The caution to not wear a sleeve while sleeping pertains to your normal bedtime routine--there are nighttime sleeves/garments that are made for sleeping. Regular compression sleeves are NOT a "nighttime garment" since they could possibly roll and create a tourniquet effect on the limb that you wouldn't realize while sleeping.

    I wish I had some actual valuable answers for you, but it seems we are all just trying to figure it out for ourselves. Good luck to you, and I hope you never develop full-blown LE. Just be vigilant and pay attention to your body. It's likely that you still have a bit of surgical swelling and hopefully all that will resolve soon. Take care.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    After my bmx,11 nodes out on cancer side, I woke up with a red sleeve on that arm, said no bp, blood draw, and a swollen hand and arm. Yep, woke up with LE. Was sent to a specialist. He did massage and wrapped it. Ordered the compression sleeve and glove. Too hot and itchy for Florida so I gave up on all of it.

    Then the cancer came back on the other side. 7 nodes out. Eventually I developed LE in that arm too.

    It doesn’t hurt or bother me. I have bp done on either arm, labs and injections on either side, doesn’t bother me.

    Im 10 years out from original dx, not going to change anything for this. It’s a crapshoot if you will or won’t get it. You can only do what you feel is best for you.

  • salamandra
    salamandra Member Posts: 745

    It's so frustrating not to be able to get medical advice you feel confident in. I'm sorry.

    You're hearing a lot in this thread from women who did get LE, which makes sense. But that doesn't mean it's the norm. I had 3 lymph nodes removed and I've been fine. No one even mentioned to me about not getting shots in that side until a tech mentioned it at one of my follow up check ups two years later.

  • alicebastable
    alicebastable Member Posts: 1,946

    My lumpectomy and single node removal was (were? Done together, so I'll stick with was!) done in 2018. I've never had a problem. The first several months, I'd get occasional weird sensations in that arm, but it could have been from nerves being cut in the node area by the armpit. Either way, I did mild flex exercises (slow-motion fist pumps forward and above the head, about 15 each) when it happened, and it eased it each time. My MO is quite strict about no shots, blood draws, or BP on that side. I've asked my pharmacist and the nurses at other doctors' about it, and they said if the MO wants it, that's what's best. But like Salamandra said, the people who post about it are the ones who have it - the rest of us don't really think about it much.

  • ruthbru
    ruthbru Member Posts: 47,241

    I have followed the advice of a friend who did end up with LE: Be cautious, but don't let worry rule your life. If you never develop symptoms, you'll have wasted a lot of time worrying over nothing. If you do end up with it, you'll deal with it then.

  • ratherbesailing
    ratherbesailing Member Posts: 129

    Mumuriri, I'm with ruthbru. Your therapist sounds a lot like the first one I saw. She put me in a panic, and it took a while to figure out a lot of what she told me was simply wrong. It's like so much in medicine - we want absolute answers and find there are none.

    You could see another therapist for a second opinion. You can also try and really pay attention and listen to your body. If you vacuum for four hours (or thirty minutes) do you feel a difference in your arm? Perhaps it feels a little more "full?" If so, then yes, maybe look into garments. But in the meantime, try not to let fear take over.