seromas and LE study

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited January 2011

    Thanks, Cookiegal.

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    OMG, this is Mei Fu who is a director on our stepupspeakout site! She didn't tell me she was in San Antonio with this!

    I developed a seroma and axillary web and it's what led to my LE.

    When we were at the NLN conference, Jodi Winicour, the expert on AWS said that due to all the trauma to the axilla--especially with SNB where there is so much retraction, she doesn't want women lifting their arms above shoulder height for 10-14 days post op: the lymphatics are delicate, and if they're going to heal and re-form connections, they shouldn't be stretched.

    She talked about women who were aggressively stretching post op and came in with big axillary seromas and AWS and developed LE--and she was describing me.

    Sure wish I knew this stuff at the time...

    I'll email her and get the abstract.

    Kira

  • ktym
    ktym Member Posts: 2,637
    edited January 2011

    Interesting.  Anything I've seen describes worse arm and shoulder problems with the old instructions for not raising your arm above shoulder height, that would be the first time I've heard someone give a good reason for not raising the arm. 

  • alex56
    alex56 Member Posts: 136
    edited January 2011

    Man, I wish the info doctors gave us was consistent.  My BS told me he wanted me to be able to reach over the top of my head with my affected arm and touch the opposite ear after two weeks.  I couldn't do that for many weeks after my mastectomy and node removal and now I'm glad I didn't try harder.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2011

    Speaking of shoulder problems....this is not really LE related but interesting.

    http://abclocal.go.com/kgo/story?section=news/health&id=7879903

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    I have Jodi's slides: and here was her slide on the critical healing for lymphatics and the desire to avoid additional traction through the axilla:

    Lymphatic Regeneration
    􏰀The stumps of the afferent or efferent
    collectors of a removed node connect as
    the result of proliferation of the
    endothelium at the terminal portion of the
    damaged vessel.
    􏰀Regeneration of superficial vessels in
    dogs takes 4 days and deep vessels in 8
    days.


    Her next slide was:

    Protection vs. Movement-What's a Gal to do? 

    So, it made sense to me, and I'd sure experienced the tons of webs and protracted seroma (my surgeon asked me what to do with it at the two week check, and I was tired and sore and told her to leave me alone, and it persisted for over 4 months until it was finally aspirated. Sure wish I'd had her aspirate it early--and wish she'd known what to do and didn't ask me to decide....)

    Kira

  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2011

    It's funny because I could have sworn I read a study about how getting PT asap helps prevent LE.

     A question for the ages.

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Cookie, you're right, the study was in BMJ--and there was a sub-set of women who developed axillary web syndrome who developed LE at a high rate. I'm not sure if the study details what the PT involved--I believe it was LE therapy.

    Found the abstract: They did PT in the first month after ALND

    ABSTRACT
    Objective To determine the effectiveness of early
    physiotherapy in reducing the risk of secondary
    lymphoedema after surgery for breast cancer.
    Design Randomised, single blinded, clinical trial.
    Setting University hospital in Alcalá de Henares, Madrid,
    Spain.
    Participants 120 women who had breast surgery involving
    dissection of axillary lymph nodes between May 2005 and
    June 2007.
    Intervention The early physiotherapy group was treated
    by a physiotherapist with a physiotherapy programme
    including manual lymph drainage, massage of scar
    tissue, and progressive active and action assisted
    shoulder exercises.
    This group also received an
    educational strategy. The control group received the
    educational strategy only.
    Main outcome measure Incidence of clinically significant
    secondary lymphoedema (>2 cm increase in arm
    circumference measured at two adjacent points
    compared with the non-affected arm).
    Results 116 women completed the one year follow-up. Of
    these, 18 developed secondary lymphoedema (16%): 14
    in the control group (25%) and four in the intervention
    group (7%). The difference was significant (P=0.01); risk
    ratio 0.28 (95% confidence interval 0.10 to 0.79). A
    survival analysis showed a significant difference, with
    secondary lymphoedema being diagnosed four times
    earlier in the control group than in the intervention group
    (intervention/control, hazard ratio 0.26, 95% confidence
    interval 0.09 to 0.79).
    Conclusion Early physiotherapy could be an effective
    intervention in the prevention of secondary lymphoedema
    in women for at least one year after surgery for breast
    cancer involving dissection of axillary lymph nodes.
    Trial registration Current controlled 

    Here's the paragraph re: AWS

    We also found that 12 of the 18 women who developed
    secondary lymphoedema had axillary web syndrome
    during the second and third week after surgery
    .
    The axillary web syndrome is a known but poorly studied
    complication of surgery. No study has
    shown any link between the axillary web syndrome
    and the onset of secondary lymphoedema. We and
    others suggest that the axillary web syndrome
    may be a sign of injury to the lymphatic system and it
    could produce a lymphatic overload as a result of failure
    of the lymphatic system. This overload, together
    with other factors, could be responsible for the onset
    of secondary lymphoedema. 

    Also, this was their theory:

    Recently, a study to develop an animal model of postsurgical
    lymphoedema reported that after nodal excisions
    the limbs became progressively more
    oedematous up to three days after node dissection
    and that the swelling decreased but had not resolved
    16 weeks after surgery.58 Taking this into account and
    since the basic rule is that all oedemas result from an
    imbalance between filtration and resorption (tissue
    drainage), the implementation of a measure to restore
    this balance during the period of higher filtration
    should prevent or delay the onset of secondary
    lymphoedema. Our study included manual lymph
    drainage, which is a special method involving gentle
    massage to improve the lymph circulation, especially
    subcutaneous circulation, to stimulate the initial lymphatics,
    and to stretch the lymph vessels, consequently
    improving the removal of interstitial fluid. Manual
    lymph drainage encourages and improves resorption
    without increasing filtration.34 59 It has been shown to
    be effective in the treatment of lymphoedema because
    it improves the removal of fluid from interstitial
    space.32 34 59 60 We therefore think that the implementation
    of manual lymph drainage after surgery for breast
    cancer in the early physiotherapy group could have
    contributed to the better results in that group. This,
    together with early physiotherapy for other effects of
    breast cancer surgery, and related to the onset of secondary
    lymphoedema,18 20 21 23 24 could explain the
    effectiveness of early physiotherapy in the prevention
    of secondary lymphoedema in women who have had
    surgery for breast cancer with axillary lymph node dissection-
    at least during the first year after surgery.
     

    Kira

  • sushanna1
    sushanna1 Member Posts: 764
    edited January 2011

    Cookiegal and Kira--Thanks for posting.  I also developed Axillary Web syndrome fairly soon after surgery.  I was doing really well at the stretching exercises fairly soon after surgery and two weeks later literally felt like a puppet on a string.  Hmm.  Also had a seroma after my sentinel node biopsy which no sooner was drained and healed and I had to have an axillary node dissection.  Also, I am personally convinced that taxotere contributed to my lymphemdema.  Sigh.  Thanks for all the information.

    Sue 

  • otter
    otter Member Posts: 6,099
    edited January 2011

    cookiegal, thanks for posting that link. I saw a press release about the article in my in-box today, and I'm glad someone posted it here.  It is very relevant!

    Odds and ends:

    1) alex56 said:  "My BS told me he wanted me to be able to reach over the top of my head with my affected arm and touch the opposite ear after two weeks." Yeah, what's with that?

    My BS told me on the day I left the hospital (left mast/SNB) that she did not want me reaching above my shoulder until after my drains were both out, which took 10 days.  Four days after that, I went back to her to have a seroma aspirated (more about that in a minute), and she was "surprised" that I could not raise my arm straight above my head so she could do the aspiration. "But, you told me not to!", I protested. The point was that the messages I'd been getting were not consistent.  She gave me suggestions about stretching exercises, and I started reading about post-mastectomy PT and doing it on my own.  Was that a mistake?  I did not have the range-of-motion I should have had at that point, so PT seemed appropriate.

    2) Things went okay after that, until I developed axillary web syndrome about 3 weeks after surgery. I went back to my BS, who noted that I still did not have acceptable range of motion. So, she referred me to a PT/LE therapist. The therapist was booked for the next 4 weeks, and by the time she could see me the AWS was gone. I had a good (2-hour) orientation/educational visit with her, though.

    3) Everything went well until 3 weeks after my last chemo infusion, which was ... wait for it:  Taxotere & Cytoxan!  (Yes, I do think there's an association between the taxanes and risk of LE.)  The AWS returned with a vengeance (2 distinct cords, one running across my inner elbow to my wrist).  I also developed swelling in my thumb web, index finger, back of my hand, wrist, and forearm.  I went back to my BS, and she sent me back to the PT/LE therapist.  She said I had "Stage 0" LE because it was not measurable with the usual techniques but was clearly visible.  She sent me for a sleeve and gauntlet, taught me how to wrap my arm, taught me MLD, and provided me with 3 therapy sessions (including some terrific upper-body exercises).

    So, my story was mast/SNB --> seroma --> axillary web syndrome --> Taxotere chemo --> mild lymphedema.  I will be interested to hear what the physiologists say about that link between seromas and LE.

    otter

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Otter, I have a thought/question about seromas--as you remember, my surgeon was "stumped" by mine, which clearly seemed to be driving the axilary webbing, and asked me if we should aspirate it, and I was ticked off at her (putting it mildly) and said no--it wasn't until nearly 5 months later that it was finally aspirated.

    So, a seroma indicates that there are "loose ends" and fluid is collecting--does prompt aspiration help?

    Of course I am upset that I made the "wrong" decision--and even more upset that I had to decide.

    I recently read the thread about up to 10% of women who receive taxoterene with permanent hair loss--and it's only now being acknowledged.

    We make the best decisions we can to treat the cancer, but there is so much risk/benefit/collateral damage--and when we live with the long term side effects, all too often, our treatment team aren't in it with us--they saved our life, just be glad you're alive.

    Still waiting for Mei to send me the abstract.

    Kira

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2011

    I had a seroma that I got drained in a walk-in clinic so my surgeon never saw it. But, it seemed like I still had too much tissue left, so I did go see him and he agreed to an incision-revision. Well....after the surgery at my post-op visit he was absolutely STUNNED at how much "tissue" seemed to be there still. He swore he took out a good chunk. He never acknowledged LE and didn't "believe" in it. It was my onc that caught my truncal LE...sigh. I always wonder if I hadn't gone for that incision-revision but was treated for LE instead.....

  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2011

    Kira....thank you for articulating how I feel too.

    Since my initial tumor was small and they thought I would have clear nodes, all any one told me was "You will be fine." Surgeon, radiologist, GYN, all said it. Surgeon even said as I was waking up to news I had 8 nodes out, "Nobody is getting Lymphedema!"

    So while I am thankful not to have advanced cancer, mostly I am shocked between frozen shoulder and LE how much my life has changed. I drank the "living life on the edge after cancer kool-aid." I really thought I would go on to spend what ever healthy years I have making the most of things.

    Now I can't dance, (my hobby), I am afraid to get on a plane(my other passion), and I have trouble picking up equiptment at work and have to ask for help.

    Nobody ever warned me I could end up slightly disabled from this.

    I think I have a lot of shock and grief still, and it's been complicated by the ping pong diagnoses.

    Thanks for letting me rant...I think just needed to articulate why I am so frustrated about this.

  • ktym
    ktym Member Posts: 2,637
    edited January 2011

     cookiegal, you just described me to a T.  Add in the neuropathy too.  That's how I feel, the time and effort that goes into dealing with the disability makes it hard to live life to the fullest for sure

  • SleeveNinja
    SleeveNinja Member Posts: 178
    edited January 2011

    Very interesting.  Not sure I understand:  does Mei's study indicate that the link btw seroma and LE is causal or comorbid?   Does a seroma (and aspiration, etc.) contribute to  tissue injury that results in LE?   -or-  is a seroma indicative of the same tissue response/process/ vulnerability that leads to LE?  (or both, or yet TBD?)  Does that make sense?

    My ALND was 20 (!) yrs ago.  I was told to stretch and given a ridiculous pulley to hang over a door to "reach to recovery."  I developed a huge seroma soon after surgery  and had to have it aspirated every few days.  This probably went on for a month or two.  (Hmmm, it was painful but maybe it saved me from stretching to soon or too quickly?)  I remember having palpable strands of tightness that may have been cording (I never heard of cording until I joined this forum) and resolved gradually over time.  I have no risidual range-of-motion issues or shoulder problems (though a LE PT recently told me that scapula is very weak which she said is common after ALND.)

    Kira, and all,  -  We make the best decisions we can at the time with all the information we have.  So do our doctors (the good ones, anyway).  Sometimes, when I get in a metaphysical mood, I think LE, for me, is somatic holding onto regrets, backed-up grief, not letting stuff go, etc., etc.   But mostly, I think this cigar is just a big, fat, high-price cigarillo which I don't want and didn't ask for.

  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited January 2011

    SleeveNinja,

    Interesting questions.  I was wondering similarly if the aspiration I had might have been more of a problem than the small-ish seroma.  I also had tight strands that sometimes popped (without pain) when I was doing my stretches some weeks out from surgery.  I hadn't heard of cording until I came here a year after my surgery.  And I had the pulley and rope, from my PT.  I had so much nerve pain from the ALND that I couldn't do the exercises the surgeon gave me.  I wonder if that was a good thing now.   I ended up with 3 months of PT because of the nerve damage, and I do have some limited range of motion on left side, due, I have assumed, to some scar tissue or poor surgical technique on that side.  

    At the end of the day, however, I am pretty sure I will never know how this could have gone better, but I sure wish it had, and I certainly wish someone would make it better for the ones who come after me!

    Dawn 

  • Marple
    Marple Member Posts: 19,143
    edited January 2011

    My drains were pulled at day 5 if I remember correctly.  I developed a seroma shortly after that.  It was drained 2 or 3 times.  I also had cording (had no idea what it was) and had already been released from the surgeon awaiting my first med. onc. appt.  Instinctively I stretched a lot and it disappeared but yes I had both and yes I developed LE. 

    Good article Cookie.  (Sigh)  If only I knew then what I know now.

  • Nordy
    Nordy Member Posts: 2,106
    edited January 2011

    Hmmmm... I didn't read through all the posts, or the whole study for that matter... but I DID have a seroma after my mastectomy. Interesting, interesting.

  • Carolyn422
    Carolyn422 Member Posts: 162
    edited January 2011

    Had surgeroy to remove the breast 4/2010.  Had chemo 6/2010 - 9/28/2010 - taxotere and cytoxyne.  LE developed after that.  Started PT and then on 11/2/2010 had to be russed to emergency surgery to remove the seroma and my tishew expander.  My chest was all shades of purple, grew, and yellow.   My first thought was whether PT had something to do with triggering the seroma,  I did however, find out from PS that chemo had not been good to several of his other patients,  They also developed seromas.  Any thoughts on whether the movement of fluid around could bring on the seroma?

    Thanks.

    Carolyn

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Got the abstract from Mei:

    Title: Seroma Formation is Associated with Lymphedema Related Symptoms
    Authors:
    Mei R. Fu, PhD, RN, ACNS-BC; Assistant Professor; College of Nursing, New Yrok Univertsity, New York, US
    Amber A. Guth, MD, FACS, Department of Surgery, New York University Clinical Cancer Center, New York University School of Medicine, New York, NY
    Elenice Dias Ribeiro de Paula Lima, RN, PhD, Federal University of Minas Gerais, Brazil
    Francis Cartwright, PhD, RN, Director of Nursing, New York University Clinical Cancer Center, New York University School of Medicine, New York, NY
    Deborah Axelrod, MD, FACS, Department of Surgery, New York University Clinical Cancer Center, New York University School of Medicine, New York, NY

    Background. Seroma formation or accumulation of serous fluid is one of the most common wound complications following breast cancer surgery, occurring from 30% as evidenced by needle aspiration to 85% by ultrasound in women following breast cancer surgery. Seroma formation has been speculated as a resultant of lymphatic fluid collection or acute inflammatory exudates in response to surgical trauma and acute phase of wound healing. Seroma usually leads to prolonged wound healing, tissue inflammation and subsequent fibrosis and necrosis, it has been hypothesized that seroma formation is one of the main risk factors for post-breast cancer lymphedema. Lymphedema, a syndrome of abnormal swelling and multiple distressing symptoms, exerts great negative impact on breast cancer survivors' quality of life. Understanding the relationship of seroma with lymphedema and related symptoms may help to reduce the risk of lymphedema through effective management of seroma.

    Purpose. To explore the relationship of seroma with lymphedema-related symptoms.

    Materials and Methods. Data were collected from 135 breast cancer survivors using a Demographic and Medical Information interview tool, clinical assessment, and Lymphedema and Breast Cancer Questionnaire for lymphedema related symptoms. Data analysis included descriptive statistics, t-tests, Chi-square, Fisher's exact test, and correlation coefficients.

    Discussions. Thirty-five patients (26%) developed seroma following breast cancer surgery as evidenced by needle aspiration. Locations of seroma formation included axilla, breast, and upper chest. Of the 35 women, 33 (94%) had measurable lymphedema; clinical assessment revealed that 26 of the 35 women had severe lymphedema and the rest of 9 patients had mild and moderate lymphedema. Age, type of surgery, number of lymph nodes removed and positive axillary lymph nodes were not correlated to seroma. Body mass index (BMI) was significantly correlated to seroma (r = .172, p = .04).

    Pearson correlations showed seroma formation was significant correlated with symptom cluster of lymphedema (swelling, heaviness, firmness/tightness, numbness, and stiffness; r = .224, p = .009) and inflammation (redness, higher temperature, and tenderness; r = .287, p = .001). Significantly, more women with seroma experienced more lymphedema related symptoms. Having seroma, lymph nodes removed and radiotherapy together accounted for 10% of lymphedema-related symptoms (R2 = .10, p = .003). Estimated relative risk for the women who had seroma in developing lymphedema was approximately 3 times more than those who did not (p = .00).

    Implications: It is important to assess and manage seroma formation. Evaluating symptom clusters of inflammation and lymphedema may be one of the cost-effect strategies to detect subclinical seroma to ensure timely interventions to prevent excessive fluid production and build-up. Current routine clinical management of seroma mainly uses needle aspiration. Further research should focus on other effective strategies to minimize seroma formation, such as strategies of promoting fluid drain and prevention of inflammation.

    Wish I knew this back when I had my seroma that wasn't drained. It makes a case for ultrasounding women to pick up subcliinical seromas, and trying to prevent them and treating them when they occur.

    Kira

  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited January 2011

    Thanks so much Kira.  I'm four and a half years out from my bilat surgery and only now beginning to understand just what was going on with me at the time of my surgery.  My axillary seroma was drained the week after my drains were removed, but I can't help wondering if some of my numbness (I still have a lot of it under arms, back of upper arms, areas on back on both sides, and chest) might be LE related, and I just can't feel it there.  So very much not to know, and how cruel of the surgeon to deny all of it...the lymph node removal, the pain, the nerve damage, and any chance of my developing LE.  Thanks again for posting this.

    Dawn 

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Got another reference, from the Vodder school--they used kinesio tape on 8 women to reduce seroma--whether or not that is the best treatment, I found the information about the inflammation caused by seroma to be interesting, and consistent with what we've all posted:

    http://www.vodderschool.com/current_articles

    I actually sent the SABC abstract to my (former) surgeon as an FYI. Never hurts to protect the women who come behind us....

    Kira

  • Marple
    Marple Member Posts: 19,143
    edited January 2011

    Why can't I open the link from their web site?

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Sharon, for me, it led to a pdf of the article--

    Here's another link to their blog--the article is in Lymphology, which normally requires a subscription.

    http://vodderschool.blogspot.com/

    Kira

  • alex56
    alex56 Member Posts: 136
    edited January 2011

    I've never had a seroma, but my LE therapist used kinesio tape on the trunk of my affected side, and boy, did the puddles of fluid disappear!  LOVE the stuff!  Wish he'd just wrap me in the stuff from head to foot.....

  • Marple
    Marple Member Posts: 19,143
    edited January 2011

    It led me to the pdf too Kira but I couldn't open anything after that.  I know it's some update on my puter that I've not updated.  I have no idea how to fix it.

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Darn, I have an older iMac and it worked okay for me. The article is interesting.

    - Seroma is not an accumulation of
    serum, but an exudate
    - Exudate is an element in an acute
    inflammatory reaction, i.e. the first
    phase of wound repair
    - Seroma formation reflects
    an increased intensity and a
    prolongation of this repair phase.


    Hope it opens, if you want the pdf, you can pm me with an email address.

    Kira

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2011

    Then it's bad to drain it? Or the excess still has to be drained even though it's supposed to be there? What is this kinesio tape?

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Barbe, I think it's good to drain it--I don't think a study of 8 women proves any thing--it's just one more piece of information that seromas are inflammatory and should be managed. Great if kinesio tape works, I needed mine aspirated.

    Kinesio tape is a tape that lifts the skin and promotes lymph drainage---I never had much luck with it, but it's great for other women.

    Here's a lymphnotes article on it:

    http://www.lymphnotes.com/article.php/id/215/

    Kira

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2011

    Wow! That stuff sounds amazing! And they even have latex-free. Where do you get it and is it expensive? I guess I'd have to have a professional put it on....

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