Many nodes removed and you didn't developed lymphedema?

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I don't know if it is the correct place to this thread but my SO will remove me many nodes and I' m worried about the posibility of lymphedema. Looking for some hoping stories.

Pd: I didn't used lymphedema thread because is a place for women who already has it .

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  • trinigirl50
    trinigirl50 Member Posts: 343
    edited April 2019

    I had 24 nodes out. I havent developed lymphedema. I am 4 years from surgery.

  • Simbobby
    Simbobby Member Posts: 140
    edited April 2019

    Hi Y,

    I had my bilateral mastectomy in March 2018. I had 26 lymph nodes removed and my surgeon said this is not a death sentence. I went to physical therapy and wore a sleeve during the day for prevention.

    I was not diagnosed with lymphedema - until today. Over the past year my tissue expander became infected and had to be removed. I also had 33 sessions of radiation after my mastectomy which can increase the risk of lymphedema.

    Four weeks ago I had Free Tram Flap surgery and started physical therapy today. That is when I got the diagnosis. Don’t want to scare you - just wanted to share my experience. I thought I was out of the woods.

    Wishing you best of luck

  • vlnrph
    vlnrph Member Posts: 1,632
    edited April 2019

    Feel free to put questions on the LE forum. There are many with unique knowledge who read those threads.

    Our lymph systems have been compared to roads on which we drive - some people are constructed like 8 lane super highways: they can have lots of nodes taken out with no ill effects. Others, like me, are more like a dirt track and live with chronic swelling. Impossible to predict where any given individual might find themselves...

    A person can remain at risk even after years without symptoms. It's good to get baseline measurements done prior to surgery, read about precautions and have an action plan ready to put in place should this ailment occur.

  • Misstic
    Misstic Member Posts: 115
    edited April 2019

    Maybe it would be good to define what is the criteria of lymphedema.

    I had 11 lymph nodes removed and I have a 2 cm difference between the size of my two arms. Living in France, it is considered to get lymphedema. I wore a sleeve at night and do physical therapy once a week.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited April 2019

    I had 8 lymph nodes removed and have not had any sign of lymphedema. I also had node radiation which increases my chances of developing it.

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Trinigirl50 and Letsgogolf - This is wonderful!

    Simbobby - sorry about your recently diagnosis. I wish you can handle it. Good luck to you too!

    Vlnrph - I have been reading lymphedema forum. It is really helpful. Thanks

    Misstic - of course physical therapy will be part of my life for ever now. Thanks

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2019

    I had 11 nodes removed and nothing so far, knock wood. I'm careful never to let techs take blood, run i.v.s or do b.p. checks on my right arm. I heard that (no judgment on anyone, please know) being overweight can increase chances of getting lymphedema.


    Claire in AZ


  • hapa
    hapa Member Posts: 920
    edited April 2019

    I had 18 nodes removed and also had radiation to the remaining nodes. No lymphedema yet. My RO said for someone with an ALND these days risk of lymphedema is ~15%, but some surgeons run a much higher rate than others. He said at his cancer center, the rate is around 9% for ALND patients and radiation bumps it up to 10%. But...he also said that if caught early, it is reversible about 80% of the time, and that being in shape and doing your PT exercises during and after radiation reduces the likelihood of you ever developing it.

    Lymphedema happens when an inflammatory response gets triggered in your arm and your lymphatic system can't clear it. This can happen even if you don't have nodes removed but is more common if you have for obvious reasons. I try to minimize inflammatory response by eating an anti-inflammatory diet (no processed foods) and exercising. And I have heard the same as claire about it being more likely if you are obese.

  • exercise_guru
    exercise_guru Member Posts: 716
    edited April 2019

    I only had a few nodes removed on each side so I Can't speak directly to your question. I later found out that when they remove the nodes there is a vessel that is left behind. It can gum up and affect lymphatic circulation. I had some chording down both of my arms that caused significant restriction and loss of ROM. It was eventually resoved by going to a pt who was lymphodemia trained and used a myofascial release technique ( the barns method) I think that is important to find out if available in your area.

    Also try to make sure your doc only removes nodes that are essential.

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Claire and hapa: thanks for your contribution. I have a normal weight so I am happy to hear that is a good thing to avoid LE. I am planning to do wathever to prevent it. Take care of yourselves ladies!

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Excercise guru: My armpit was positive before chemo so my SO won't even considerate another procedure than a complete remotion of nodes. Saddly mi MO says I have a high chance to develop LE. Yaggggggsss!!!

  • CaliKelly
    CaliKelly Member Posts: 474
    edited April 2019

    20 nodes removed , 8 positive after neoadjuvant chemo. Radiation after. No signs of l.e. Did weight training as soon as allowed by dr. I think the weight lifting helped prevent it.

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    CaliKelly - I always been a bit lazy but I've read that bounce in a minitrampolin helps to move lympha. I think I can try that

  • CaliKelly
    CaliKelly Member Posts: 474
    edited April 2019

    That sounds fun and doable. Put on some favorite music and go!

  • Christene502
    Christene502 Member Posts: 115
    edited April 2019

    I have lymphedema in my left leg. Went to a specialist who preformed the myofascial release technique and wrapped my leg in bandages, after that a custom compression sleeve was made for my leg.

    I am really concerned about getting it in my arms. You can hide lymp in your legs with long pants and maxi dresses, not sure you can hide it when lymphedema reaches your finger tips.

    My BS wanted me to have L-Dex test done, but it's not covered under Medicare.

  • jo6359
    jo6359 Member Posts: 2,279
    edited April 2019

    I am 15 months post-op with 18 nodes removed and one positive. Went through chemo and radiation. No signs of lymphedema. I started doing myofascial release and gentle passive range of motion and stretching within 72 hours post-op. No signs of lymphadema. I did not have reconstruction. I have always been physically fit.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2019

    I had 11 lymph nodes removed (12 years ago), 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.
  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Christene502 - did you get lymphedema in your leg because of a mama surgery? I didn't know it was posible!

    Jo6359 - those are wonderful news!

    Ruthbru - this information is very helpful to me and I will remind it. Thank you

  • Christene502
    Christene502 Member Posts: 115
    edited April 2019

    Yndorian I got lymphedema in my leg few months after having a total hip replacement. Few years later under went a total knee replacement which got the lymphedema under control. Have flare ups once in a while now.

    My BMX is scheduled May 6th.

    Its nice hearing others - they haven't experienced lymphedema.

  • LaughingGull
    LaughingGull Member Posts: 560
    edited April 2019

    Hi,

    I had 6 nodes removed, these were all the nodes in my cancer side, as I had a total axillary lymph node dissection -I just had 6 nodes. And this was followed by radiation. I am one year out of surgery, and so far no signs of lymphedema. I consulted with a physical therapist specializing in lymphedema, to get a baseline measurement, and also for physical therapy to regain mobility after surgery.

    The therapist didn't give me any exercises to prevent lymphedema, because I don't have lymphedema, and unfortunately there is no way to prevent it. After the first five years, your risk of getting goes down but you can still get it. Being thin reduces your chances, being overweight increases your chances. I take the precautions of not getting IVs of blood pressure measurements on that side, but that is about it. I swim, and do a bit of weight training on that side,

    Best of luck to all of us who got nodes removed. May we never get lymphedema OR a cancer recurrence.

    LaughingGull

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Christene502- I glad to read your LE is under control now. Best of luck for your BMX!

    LaughingGull - I wish the same thing for all of us. No LE and no CA recurrence never again.

    Thank you all for your contribution

  • vlnrph
    vlnrph Member Posts: 1,632
    edited April 2019

    Don’t start stretching too soon after surgery. Give your lymph vessels a week or two so they can recover from the trauma. Also look at the excellent stepup-speakout website.

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Vnlrph: 👍😘

  • Newnorm
    Newnorm Member Posts: 100
    edited April 2019

    There's lots of helpful information here. I've done pretty much everything Ruthbru mentions and I've managed to avoid LE after ALND. I would recommend doing research on an LE Physio specialist. I found a great one and have been seeing her every 4-6 months to get measured. She also measured and ordered a proper fitting sleeve which I wear when I fly as a precaution. Touch wood, I keep LE away!

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Anyone more there?

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited April 2019

    I had a boatload of nodes removed, six of them with cancer. Then 37 radiation treatments. I have a small area on my wrist that seems to be a bit bigger than the other side, but nothing significant. I don't wear compression sleeves.

  • Jsniffs
    Jsniffs Member Posts: 65
    edited April 2019

    I had 39 nodes removed, 2.5 years ago. I also did radiation. I did physical therapy after surgery and have worn compression sleeves at night (although not so much anymore), but haven't had any issues thus far (knock on wood). I do qigong and yoga on a regular basis, and have kept my weight down, which I think helps. I could also just be lucky.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2019

    Hi!

    I had 20 nodes removed during surgery because one had tested positive before chemo. (All were clear after chemo.) I have not developed lymphadema, and I haven't really done much to prevent it. I don't wear a sleeve while flying, but I do make sure to move my arms around during the flight, just to keep things circulating. I always get my blood pressure, IVs, etc., taken on my "normal side," not my surgery side. And that's it.

    Hope you're as lucky as me!

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Thanks to you all for giving hope to me and others who have to get a surgery! Kisses

  • Rose_d
    Rose_d Member Posts: 144
    edited April 2019

    I had 18 lymph nodes removed 7 years ago (1 with cancer) and also did radiation on that side but wasn't targeted at the axillary. No lymphedema yet (knock on wood). I am careful about no blood pressure, IVs, wearing a watch, pressure, etc. on that side but that's it. I also travel a lot and was told I should not wear a sleeve or anything while flying.

    I was very very worried about lymphedema particularly given I needed radiation but have been ok so far.

    Best of luck!

    Rose

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