Sentinel Nodes,Weight,Chest Size & LE Risk

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cinnamonsmiles
cinnamonsmiles Member Posts: 779
edited June 2014 in Lymphedema

I was reading another discussion board and the topic was LE Risk and acupuncture on the side that sentinel nodes were taken out. Here is what the lady said her doctor told her:

"I wanted to follow-up this discussion with an update from my separate talks with both my surgeon and oncologist.  Both of them said that if only 1 or 2 nodes are removed that after I heal, I can continue to do acupuncture on the affected side as well as arm-intensive yoga moves because I would have an extremely low risk of getting lymphedema.  It's because I am thin (5' 4", 106 lbs) and small-chested (34B).  The surgeon only ended up removing one node (and it was cancer free - wohoo!).  They both said that if more nodes were removed, we would have had to revisit this question though."

Does weight and chest size have anything to do with the risk of LE? Seems to be that breast size should have no bearing on LE risks. What about those who had mastectomies without reconstruction?

Thanks.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2012

    Hi Cinnamonsmiles,

    The main Breastcancer.org site can help answer some of your questions on the Lymphedema Risk Factors page. It seems the amount of lymph nodes removed and being overweight are risk factors.

    Hope this helps!

    --The Mods

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2012

    cinnamon...yes and no

    Being thin, having one node, and smaller breasts all may help....but they are no iron clad guarantee.

    (Kind of like lifestyle factors and cancer) 

    Studies are beginning to show it is more about a genetic pre-disposition and how good your lymphatic system is.

    There are women with dozens of nodes out and no LE and women with just one who do get it.

    The accupuncture on the affected arm is up for some debate. Conventional wisdom would say don't do it, but I know of one accupuncturist at MSK who does do it as part of a clinical trial for LE. 

    I was promised by my surgeon "Nobody is getting lymphedema" and here I am.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited May 2012

    I don't know if weight or breast size add to LE risk, but I'm fairly thin with a narrow trunk and very small (size AA breast). Breast size in my case is theoretical since I had a mx so on the affected side obviously made no difference. I did have full ALND with 17 nodes removed. And yes, I have LE.

    I would be careful with yoga even with only 1 or 2 nodes removed. My yoga teacher knows my limitations and for some moves either tells me not to do it or adjusts for me (I do down dog against the wall!).

    Remember that low risk doesn't mean no risk. And once you get it, it's chronic. In other words, for the rest of your life.

    Leah

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  • lago
    lago Member Posts: 17,186
    edited May 2012

    I am thin, was a 34B (barely) and had 10 nodes one one side and 4 sentinel on the other. My BS thought it was highly remote I would get LE, but I did on the 10 node side. So far the 4 node side seems OK but I do feel heaviness at times. I do wonder though if chemo (Taxotere) was what really set it off.

    My mom and her uncle both had/have LE in their legs, no surgery involved. Yes I do feel I have a genetic pre-disposition. I really wasn't surprised when I got it.

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  • Lee7
    Lee7 Member Posts: 657
    edited March 2013

    My BS said her thin ladies don't get LE.  I have news for her...I sure did. It still makes me mad she downplayed the risks because if I knew what I know now, I would have tried to be much more careful doing things.   I was about a 34B also, and was in good shape. My arm is constantly hurting me now and I have lost some range of motion in my shoulder. I am headed back to PT soon with a certified LE specialist finally.  They are hard to find!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2012

    Lee, so glad you'll have a lymphedema therapist to help you get control of your life again. There are so many of us thin ladies here with LE--not sure where they get the idea we're home free, but it sure isn't true. Do keep us posted on your new therapy. Hopefully both the hurthing and the limited range of motion will soon be a thing of the past!Smile

    Be well!
    Binney

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  • Momine
    Momine Member Posts: 7,859
    edited May 2012

    My surgeon and onc were both convinced that I could not possibly develop lymphedema. When I asked why, they always came back to my weight (which is low). However, I did develop problems, and I have mild lymphedema in both armpits, even the one where they only took one node, and in the arm where they took 22 nodes. Right now it is under control, thanks to PT and wearing a sleeve for 6 months.

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2012

    This makes me wonder how many of us had breast surgeons who downplayed (or totally denied) LE risk with just a few nodes out, and how many received a genuine risk discussion.

    I understand that there's no agreed-upon LE risk incidence after SNB or after ALND that removes relatively few nodes, and that's because the studies are not compatible; other factors such as rads/chemo make a difference; whether it's breast-conserving or mx surgery, etc.  Also, high BMI, getting a seroma after surgery,and/or doing too-early range of motion exercises after surgery increase our risk. Not to mention the genetic wild card. So I totally get how it is that a surgeon can give a very low risk assessment with a straight face--this whole question of LE risk relies on a heap of apples-to-oranges studies and risk factors.

    Even so--how many of us asked about our LE risk and were given a low-ball risk assessment?

    I'm raising my hand here:  Was told 1-3% after SNB with mastectomy.  Studies I see now suggest it could be as high as 15-17%.   I'm crying 'foul' when a surgeon picks the low end without 'remembering' to also point out that studies differ and many suggest a higher risk.

    How many of you were given a realistic risk assessment?  How many were given a low-ball assessment?

    Carol

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  • lago
    lago Member Posts: 17,186
    edited May 2012

    I was given a 3% risk, maybe lower in my 10 node side because I was "so thin." My LE MD said it was a bit higher than 3%. But I do know someone else that had the BMX, more nodes removed, radiation (which I didn't have), same chemo (no Herceptin though) and weighted more than me and to this day still doesn't have LE.

    I think genetics played a part in my risk but also because I'm small framed I just might have fewer nodes. 10 nodes, level I may not sound like a lot but if I don't have a lot of nodes it does compromise me more than someone who has many more.

    I'm not upset with my BS. These are my cards, so I will play with what I have. He doesn't have a crystal ball. His office did give me a sheet discussing LE prevention and a prescription for a sleeve/glove for flying.  When I asked for both arms they had no problem giving me the script for the sentinel node too.

    I just wish I was measured before surgery.

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  • sushanna1
    sushanna1 Member Posts: 764
    edited May 2012

    Going into surgery,  I weighed about 108 pounds and have always been small busted.  Had 11 nodes removed in two surgeries.  I went into the whole breast cancer experience trying to avoid lymphedema since my grandmother always said that living with her fat arm was worse than the mastectomy.  When I asked about lymphedema risk, the surgeon referred me to Andrea Chaville and at her suggestion I got a sleeve and gauntlet for flying.  She was wonderful and it was clear that not much was known about lymphema.  

     So maybe, lymphedema runs in my family, or maybe it was the scarring from multiple surgeries, the cording, the seroma, the radiation or the taxotere.  I did everything right until I painted a room in an unairconditioned apartment in July!  That said, so far I have been lucky.  Thanks to wonderful p.t.'s, I don't have to wear the glove and sleeve on a regular basis and I haven't wrapped since 2006.    

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  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    My surgeon told me that only 1% of his patients develop lymphedema. When I saw him recently, my arm was more or less down to normal, but the armpit was still quite swollen. He told me that the swelling in the armpit was not lymphedema, so that is one way to keep the stats down, lol.

    As far as the SNB side, all the docs assured me that I would never have a problem on that side. All the same, I do get swelling there too, in the armpit, if I am not careful.

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  • tillthen
    tillthen Member Posts: 7
    edited June 2012

    Surgery on April 23rd , doctor did 7 Sentinel nodes and my arm is numb and tingling, is this the start of lymphedema ?

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  • lago
    lago Member Posts: 17,186
    edited June 2012
    tillthen I had lots of swelling after surgery in both arms and my torso. Everyone is swollen after surgery so it may not be lymphedema.  Do mention your concern to your doctor.
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  • carol57
    carol57 Member Posts: 3,567
    edited June 2012

    tillthen, I second lago's reassurance and will add that I think numbness is common with and without LE.  In addition to mentioning to your doctor, be watchful for other LE symptoms, such as watch/bracelet/rings too tight (although if you live in a hot/steamy area, it's hard to say if tight jewelry means LE...although if you have jewelry on both hands, you might detect a difference).  Another common symptom is a feeling of heaviness in the arm.

    Some of us have had the experience that our surgeons and other physicians do not listen or really downplay our symptoms that do turn out to be LE.  So insist if you must--all you would be asking for is a referral to a qualified LE therapist for evaluation and if needed, treatment.  If the doc is reluctant, ask him to give you his estimate of when your symptoms would no longer qualify as post-surgical swelling, and then bug him one day after that benchmark if you are still seeing/feeling what you fear may be LE.

    With luck this is temporary--I hope so!!

    Carol

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