LE? advice appreciated!

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CandDsMom
CandDsMom Member Posts: 387
edited June 2014 in Lymphedema

Hi all-

I had a BMX with R SNB (3 nodes removed) for intermediate to high grade ER PR neg DCIS multifocal multicentric almost a year ago. My first surgery was botched by my recon guy, so I have had to have 3 additional revision surgeries to my breasts. I have been very careful to avoid BPs and sticks in the R arm but have noticed intermittent heaviness and fullness in the arm since the initial BMX.

My BS (and the first PS) absolutely denied the possibility that this could be LE, so I self referred to a LANA PT who said that I had about a 6% change in size in the right arm (parts of it were 4cm larger than the other side) and she said she thought I probably have stage 0 LE and that there may be changes going on at the microscopic level.  Of course she gave me good info regarding prevention (wearing gloves with dishes, etc) and is getting me a referral to get a better sleeve made but of course this weekend when I was making cookies with my little guy I burned my right arm on the cookie stone.  I took advil, have been putting triple abx ointment on it and monitoring closely. My arm is not red, but definitely feels very heavy and full.  It is a small area that is burned (maybe 1cm x 0.5 cm) and doesn't look infected but since my heaviness and fullness symptoms have gotten worse I am looking for advice - should I be doing exercises? If so which kind (she didn't really give me any info re: exercises) or should I just be calling the PT back?

Thanks much in advance!

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  • RachelKa
    RachelKa Member Posts: 174
    edited March 2011

    CandsMom,

    There was a study that came out not long ago that said weight lifting (supervised) and gradually increasing is good for you. Actually the more nodes that were removed, the more signficant the results. Here's something I wrote up on it with links to more info ...

    Weights to stave off lymphedema

    There's a new study reporting that if you've had lymphedema or are at risk of developing this condition, weight lifting can benefit you. Lymphedema is characterized by excess fluid (lymph) that collects in tissues and causes swelling (edema) in them. You've probably heard of it, if not experienced if yourself if you've had lymph nodes removed to treat breast cancer. Or if you were treated with high doses of radiation. You've probably also heard, "Go easy lifting the groceries. And don't lift your kids anymore or break out the dumb bells."

    But in December 2010 a report came out stating that weight training reduced risk for arm swelling by 36% in women who had nodal dissections and then did supervised weight training for one year. The reduction was actually higher in women who had the most lymph nodes removed - 70 percent in participants who had five or more removed.

    Based on these latest results, breast cancer rehabilitation should be the standard of care for conditioning and strengthening the arm, and ultimately for preventing injury, said Kathryn Schmitz, PhD, MPH, the lead investigator from the University of Pennsylvania's Abramson Cancer Center. The 77 women in the study looking at 154  breast cancer survivors who had lymph nodes removed, participated in twice weekly, 90-minute classes. They used free weights and machines and were closely supervised. Schmitz advises that similar programs are

    To find a certified trainer, American College of Sports Medicine: http://forms.acsm.org/_frm/crt/online_locator.asp.

    More information:

    http://jama.ama-assn.org/content/early/2010/12/03/jama.2010.1837.full

    Also, there's restorative yoga for lymphedema, and I'm about to post something saw on various natural remedies and the research on them. The post will be called Lymphedema Natural Treatment Remedies

    Hope you get it under control. I have it a little in my  wrist and arm and in my ankles and feet. I sleep with my feet propped on pillows and started taking a tincture called RDI that I get from my herbologist. The biggest help for me has been not spending 12, 14 hours a day on my  computer and making sure I walk which I don't do nearly enough of :)

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited March 2011

    Heaviness and fullness are common symptoms of LE.  That was what I had, which my BS denied as potentially being LE.  A LANA certified therapist was able to be helpful, did a MLD treatment on me, and for the first time in weeks I had some relief, although I did not notice relief for about 3 hours. You may need to discuss this further with your PT - does she do MLD?  Prevention is good, but is not enough if you are having fullness and heaviness.  You got measurements, but what is the treatment plan beyond this?  MLD is the core of treatment, and a sleeve will add to the benefits of MLD.  A sleeve without MLD is only a partial program.  If your PT does not do MLD, find someone soon who does.  Hopefully, that can give you some relief.  And once someone does MLD, you can learn to do it for yourself at home, which gives you more control over your symptoms.

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

    It sounds like your PT did not do enough: if your arm was 6% larger with 4 cm discrepancy in places that is LE--stage 0 or stage 1, and she really should do the entire treatment: teach you self massage, give you exercises to move lymph, teach you to wrap and get you good garments and teach you when to wear them.

    She just did an initial assessment and sent you on your way--I don't think she did enough, IMO.

    Here is the NLN guideline on treatment: have her, or the next PT go through all of the components and explain how they will address them.

    Unfortunately, LANA is just a test--it doesn't guarantee clinical compentency.

    http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    CanDsmom, hello!

    I agree with KC and Kira that your next step needs to be either a heart-to-heart with your present therapist to discuss implementing the NLN treatment guidelines, or finding a new therapist. Treating it promptly and well makes a big difference in ease of management on-going. If you haven't yet ordered those new garments, you might want to hold off until you get proper treatment and all swelling is reduced -- or until you have a clear understanding with your therapist about why she's skipping the therapy in your case since there's already swelling present. Garments do not reduce swelling, they only contain it, and you want it gone. Here's how to find the options for therapists near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Yikes on the burn! Glad it's not looking angry at present, but do keep an eye on it and get help immediately if you notice any of the symptoms of infection. Keep us posted! Here's a page on lymphedema emergencies:
    http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

    As for exercise, the weight-lifting study has been seriously misinterpreted nearly everywhere. Better infomation is available by Kathryn Schmitz, the study author, at the National Lymphedema Network website. You'll find her warnings there regarding misinformation about her weight-lifting study. Best exercise for lymphedema remains water exercise, but any exercise at all needs to be started very slowly, and only once the swelling has been reduced and controlled, and while wearing well-fitting compression garments. Weight-lifting is NOT a cure or a preventative, but certainly exercise is an important part of both therapy and care for lymphedema.

    So, how were the cookies?Laughing Yum! Hug your little guy for us.
    Binney

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  • CandDsMom
    CandDsMom Member Posts: 387
    edited March 2011

    Thanks all for the welcome and the response.  I have a call in to her, just waiting for a call back. The arm seems to be settling down and thankfully no sign of infection yet :)

    The cookies were yummy BTW! thanks much for the advice, and the welcome!

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