New Lymphedema - What Should My Therapist be Measuring/Doing?

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g1nnyh
g1nnyh Member Posts: 1
edited August 2016 in Lymphedema

Hi! I just got lymphedema a few weeks ago. Woke up the AM after a 3-hour intensive hoeing & weeding session & my R breast was nearly twice the size of my left! This was 3 months after finishing radiation -- in retrospect, I'd had some discomfort in my R pectoral & lat muscles for ~6 weeks that I took to be inflammation from radiation but which was more probably pre-clinical lymphedema. Trooped off to my Rad Onc, who wrote in his note that my breasts were 'symmetrical' - NOT! -- but gave me the lymphedema referral I wanted.

He referred me to a new female PT who specializes in lymphedema; however, there was a 1 week delay getting treatment because it takes WEEKS to get into PT in my small town so the referral was changed (slowly & with much red tape) to the local male OT lymphedema specialist. I don't know if he is certified but he has worked with lymphedema >5 yrs & is trained in the Klose method. He measured my hands & arms -- not surprisingly the measurements were the same on both sides since my R hand/arm weren't swollen at all (they may be mildly swollen now, I think). Since my breast is what is swollen I expected him to measure it & my chest somehow - what is usually done?? Without measurements, how will we know if it gets better? If he needs to request more treatments to be authorized by Medicare, what evidence will he have to convince them?

Are manual lymphatic drainage treatments usually done on bare skin or over clothing? I was a bit surprised not to have to disrobe for treatments but of course I had no idea what to expect. He is teaching me MLD to do at home, which I do twice a day, either on bare skin or over clothing, depending on what's convenient. I've read that it takes several years to get good at MLD - so I and my husband are supposed to become instant experts??? I really really want this swelling to go down ASAP.

I asked him about exercise, since I love running, walking, yoga, weight-lifting & gardening. I haven't really noticed that exercise makes it worse (except maybe sometimes it does vs sometimes it makes It better). He didn't recommend I limit my exercise & said "Exercise is good, it stimulates lymph flow" - except that's too simplistic, obviously. No more long hoeing/weeding sessions, certainly.

I've only had 2 treatments so far so I can't expect to be an expert in self-care or for the swelling to have completely resolved. But it seems like nothing has changed, or it may even be worse: I sometimes get that tired, achy feeling in my upper R arm & wrist & sometimes there's a new little 'puffy' spot on my lateral chest wall. And I'm only scheduled for 1 treatment per week for the next 2 weeks. Should I be concerned about my therapist or am I just being impatient?

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2016

    Well, my BS' NP measured both hands and arms before surgery, as did my LE doc after rads. My breast had swelled, but he declared it a seroma and not LE, so he didn't measure it. He didn't even think I had arm LE but for my having reported inner forearm cording and then a feeling of fullness in my upper arm when I spent time in the mountains of Sicily, so he classified it as Stage 0 LE and referred me to a great therapist. He is a founder of LANA and she is the head of my cancer center's LE physiotherapy program. She measured my hands and arms and found no difference; but the weekend after my second session I had considerable tightness and swelling after grating hard cheese, scooping hard ice cream, and playing guitar with my arm draped over it--and the tape told the table. At the end of therapy, one of my measurements was even smaller than pre-op. Nonetheless, I wear compression for all flights >1hr, exercise, long cooking sessions,and playing guitar in hot weather. I always travel with at least 2 sets, and keep one in my purse I case I have to take a rapid high-rise elevator (which caused swelling on Mothers Day when we went to the top of a skyscraper for brunch). My therapist also had me sleep in a leisure bra with a Swell Spot pad tucked in until the fibrosis over the seroma softened and the bulge disappeared.

    I was told to always do MLD on bare skin, because the lymph vessels are just below the surface.
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  • AnnaSm
    AnnaSm Member Posts: 5
    edited August 2016

    It's a good thing that your not that swollen in your arm. But maybe you need a compression garment to keep it that way? Im not liking that you are feeling these symptoms in your hand, and don't have a sleve.

    Where im from (norway) it's common that the therapists help in order compression for chest if necessary. Don't know how often therapists measure the chest...

    http://www.jobst-usa.com/product/bellisse-bra

    If you have lymphedema in the breast, Manual lymph drainage techniques can be applied directly on the chest! Is he not doing that, and are you not learning these techniques?

    An easy exercise that I already have recommended 3 times in this forum is an exercise that has proven to remove 5 ml interstitial fluid after execution. It has been proven to remove fluid from the arm and chest area. I'm such a fan of it! Press the top link on the google link here if you want to learn more.

    https://www.google.no/webhp?sourceid=chrome-instan...

    Do you have any big scars and hard tissue on the chest or reduced movement in your shoulder? Working on softening the tissue and regaining movement in the arm can be important as well. If you want a great exercise program for what i just mentioned that is free if you make a profile on a page i would recommend this one! Used it myself :)

    http://www.exeromed.com/product/exercises-after-br...



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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2016

    g1, welcome! Glad you found us and hope you'll find some good shared experiences here.

    Definitely time to find another therapist. Klose is a good training school, but LE therapists are generally unsupervised in their field, so they can get lax with time and the demands of their facility to take on more patients. Good LE therapy is time-intensive and hospitals and clinics that offer LE services (and maintain high standards of treatment) often have to do so on a non-profit or low-profit basis. Do look around for a "second opinion"--preferably with someone who knows that MLD needs to be done on bare skin to produce the gentle traction that stimulates the lymph vessels to move things along. LE therapy also involves a lot of teaching, but it shouldn't involve handing over quite so much responsibility to the patient! Three visits a week would work as a minimum for initial treatment, perhaps tapering somewhat as you gain skills you can demonstrate to the therapist.

    Measuring truncal LE is, frankly, just about impossible. Not only is our chest area a chaotic bit of geography to map, but we breathe, which changes everything. So we patients generally rely on eye-balling the area and checking the marks left when we remove a bra--they are generally more pronounced on the affected side and tend to fade more slowly. Trained and experienced therapists, though, are able to judge the extent of LE by palpating the tissue.

    Here's information about exercise and LE:

    http://www.stepup-speakout.org/Handout%20doc%20for...

    And here's more about weight-lifting and LE specifically:

    http://www.stepup-speakout.org/Weightlifting%20and...

    You didn't mention anything about compression of the affected breast, but it's an important part of dealing with this. Here's information that can help with that:

    http://www.stepup-speakout.org/breast_chest_trunck...

    Do check out the links at the bottom of that page about breast binders, camis, bras and "swell spots" to help in dealing with the swelling.

    In short, you're not just being impatient--you need better care. Go for it! And please do let us know what you discover.

    Gentle hugs,
    Binney

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    ChiSandy your description of forearm cording made me wonder what the heck was going on with my arm the other day. Right above my wrist I saw/felt a little bump that starting moving down towards the hand, within minutes! It felt tight, like the cording I used to have under my arm. I got so scared I thought it was a blood clot. But it was gone within an hour. My whole arm feels tight and "stiff" if I use it too much that day. I don't lift or strain it, but it's just the repetitive use that causes it. Thanks for your post because I now I know that even things like elevators can cause swelling and I don't have a sleeve to prevent that. It might be time to go back to my LE therapist.

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  • LymphActivist
    LymphActivist Member Posts: 64
    edited August 2016

    First of all, I'd like to suggest that you read my primer on breast lymphedema on my LymphActivist's Site. Go to www.lymphactivist.org and follow the RESEARCH --> BREAST LYMPHEDEMA --> For Therapists tabs. This should give you a good grounding on breast and truncal lymphedema, what it is, how it is treated, and references for more study. By all means involve your prime physician in this learning because some of the methods for measuring breast and truncal lymphedema require that you be referred for ultrasound imaging, skin tonometry, or electrophysical measurement such as with a tissue dielectric constant measurement. These methods are used to measure lymphedema severity and can probably be used to show the progress of any therapy. And by all means consult your qualified lymphedema therapist to learn how to do home manual lymph drainage of the breast, chest and trunk. Good luck to you.



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