The Myth About Sentinel Node Removal and LE

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cinnamonsmiles
cinnamonsmiles Member Posts: 779
edited June 2014 in Lymphedema

I had a double mastectomy with sentinel nodes removed from the right and left sides. I was NEVER given information on LE prevention UNTIL I was finally diagnosed about 1-1.5 years after my BMX (I had signs of LE 6 months afterwards, even complained of those symptoms to a breast occupational therapist who was the hospital and clinic's system "expert." I was being treated for pain and scar tissue adhesions. The LAST day of OT, she "finally heard" me when I was talking about swelling, feeling like there was a rubber band around my upper arm  and gave me about  a 5 minuted rundown on MLD.)

I even saw a breast surgeon around 2 years after my BMX for an LE consult  and said that it was highly unlikely that I would get LE on one arm, let alone bilateral and truncal...Well, guess what...I have bilateral LE in the arms, hands and truncal!!! I had already been diagnosed by that time,too.

All I know is thank goodness for the people on the LE boards. THEY told me that people with sentinel node removal CAN GET LE and should take precautions.

ALL I know about LE has come from these discussion boards and the websites they recommended.

It is a total myth that those with "only" sentinel node removal don't have to worry about LE and I want to make sure that we make aware for those that are told differently so they can be informed and take precautions!!

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited April 2014

    cinnamonsmiles - I also had a BMX with SNB, and I got the same misinformation from several medical professionals. When I asked about LE, their response was something like, "Oh, phtttt, you don't need to worry about that. You only had a SNB."

    Thank God for these forums. Through the posts of others, I learned how to advocate for myself, even to the point of finding professionals outside my medical network who were more knowledgeable and willing to teach me to take care of myself.

    Up to now, I have been fortunate... no LE. But the awesome therapist I did see told me that she had a patient who developed it ten years after her BMX/SNB.... because she tried to pull down a broken garage door!

    Good post! Now if we could only get the medical professionals to educate themselves.....

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited April 2014

    While it is true that having just a few nodes out can precipitate LE in some people, it is also true that disrupting the lymph channels throughout the chest by having mastectomy surgery also causes or adds to the LE.  Some of the lymphatic vessels repair themselves and some new ones can form but, let's face it, we are never as good as new after going thru' the surgical trauma.

    I think the dangers of developing LE seem to be vastly downplayed, if mentioned at all by the medical professionals.  It is a good thing that you can get the real stories of real women here on BCO.

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  • aunt_paula
    aunt_paula Member Posts: 271
    edited April 2014

    I completely agree! I had BMX with SNB on right side only (3 nodes removed), and developed LE on the LEFT side. Go figure!

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited April 2014

    Cinnamonsmiles I have a similar story.  I had only 1 node removed on my cancer side with a lumpectomy.  My BS said I could not get LE. (which I knew was BS)   I had read up about LE alot before my surgery.  I took all the precautions to try to prevent it.

    7 weeks later I had a BLM with expanders placed (no nodes removed)  I had pain & swelling on my bad side almost immediately.  I complained constantly to my PS.  he finally sent me an expert on LE she said I had temporary LE- that it would go away in 6-9 months.   I was not told to do anything for it :(

    Though I was already trying to wear bras that lessoned the pain.

    4 years after that My arm started bothering me...I saw a PT & she confirmed my truncal & arm LE.  My truncal LE has kept me in daily pain for 6 years : (

    The original therapist I saw is now at the Very top here for LE.  I feel I should let her know that my LE was not temporary.

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  • encyclias
    encyclias Member Posts: 302
    edited April 2014

    While I -- so far -- have luckily not experienced LE, I did ask the general surgeon who did my lumpectomy and SNB last summer what my chance of getting LE were if a node or two were removed, and he said 10% unless many more nodes were involved.  So I was at least forewarned.  I would hope other surgeons would at least comment on it before a SNB.

    Carol

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  • Annette47
    Annette47 Member Posts: 957
    edited April 2014

    I (knock wood) don't have LE so far either, but my BS has never mentioned it to me at all.   One of the radiation oncology nurses was the one who talked about taking precautions but even she didn't really say why.   I was already familiar with it though because a good friend has a fairly severe case of it for several years following a mastectomy and removal of 7 nodes.

    I understand they don't want to scare people when the majority will never have a problem, but I do think they should do a better job telling people what to watch out for so it can be caught early in the event it does occur.

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited April 2014

    Lymph-Oedema More Common Than Realised After Sentinel Lymph-Node Dissection: Presented at SSO 

    http://www.firstwordpharma.com/node/1196009#axzz2zukzaaHZ

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2014

    Jane, thank you for posting this study report. I too have LE after SNB. I was also given the 3% or so LE risk estimate after I asked. 

    GREAT topic, Cinnamon. It's also worth noting that the definition of SNB can extend to several nodes. My "sentinel" became 5 nodes, not because any cancer cells were found, but because the dye lit up the nodes like a wagon wheel.  I think the surgeons quote risks always portraying SNB as a single node, but surely the LE risk grows when more nodes are taken. 

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