Lymphedema therapist referral? How? When?

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Mellie289
Mellie289 Member Posts: 156
edited June 2014 in Lymphedema

Hi everyone - I'm recovering from surgery last week and just got my diagnosis yesterday. I'm trying to gather as much information as I can and learned that I'm now at risk for LE since I had some nodes removed.

I will have my followup with the surgeon Monday to get my drain removed and a referral to an oncologist (I need chemo and radiation) but I also want to be proactive about preventing lymphadema as well as dealing with my cancer. I was in the middle of a journey to lose weight and get in shape when I found the lump and I want to do as much exercise as I can when I feel well enough. I would like to see someone about getting baseline measurements and compression garments. I know that starting Insanity is now on hold indefinitely!

How do I find a lymphedema therapist? Did people get referrals from someone on their breast team or their primary care physician? If this falls under the category of physical therapy, I'm pretty sure I will need a referral for my insurance to cover the visit. I want to make sure I ask the right doctors for a referral when I see them in the coming weeks.

Thanks for any advice!

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited June 2013

    I got a referral from my RO when I was starting rads. It was right in the same building, so convenient.



    I had no signs of LE yet, but knew I was at high risk because of having nodes removed, the rest of them radiated, and also I had pretty bad "cording" which also increases risk. So I wanted to be proactive and meet with her beforehand and talk about prevention, anything I can do to lower the risk. And get measured for a sleeve in case I should need to travel via airplane, or do any unusually heavy lifting.



    The insurance covered the consult, no problem, even though I had no symptoms yet at the time.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited June 2013

    My breast surgeon made me attend a class on Lymphedema BEFORE my drains were out at the Univ of Michigan.  GREAT IDEA.  So many people don't get that information before it is too late.

    As other ladies who will chime in here on LE will tell you, an LE THERAPIST that is great makes all the difference.  Do research and even if you have to travel to see a good one, find one!  They are out there!

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2013

    my BS actually identified my LE....she could see it on my first post treatment mamo.  She also gave me the referral

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  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2013

    it is important to find an LE certified therapist who knows what they are doing.  You can find a list of certified therpists at www.stepup-speakout.org  Also a great site to learn the signs and precautions to take

    best wishes

    Maggie

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  • Outfield
    Outfield Member Posts: 1,109
    edited June 2013

    Jennie,

    I was aggressive finding people in my small city.  I had no problem getting the referral, but some women apparently do.  Any doc can put it in - your medical oncologist, your breast surgeon, your PCP - so if one refuses just ask a different one.  

    I wasn't sure I trusted the first lympehdema therapist I saw, so I asked women I met at support groups, asked a nurse navigator in another healthcare system, used web searches for providers certified by the major organizations:  get the picture?  Luckily, my lymphedema came on a few months after I finished radiation, not in the middle of treatment.  I would not have had the energy to pursue treatment if had happened during chemo.  

    I think you are absolutely wise to be thinking about this now.  A lot of providers in the field deny the existence of lymphedema in one way or another, and some don't seem to want to make the referrals, or don't want to make the referrals until someone has obvious lymphedema.  I don't understand or agree with that at all.  Makes sense to me to see someone and feel comfortable with a game plan in case you do run into problems.

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  • sherry35
    sherry35 Member Posts: 409
    edited June 2013

    I was also referred by my RO during rads. It was in the same building. They took baseline measurements and I got lots of information. I don't have any signs or symptoms yet but am very vigilant about no blood pressure, blood draws or needle pricks in my right arm. I also wear a sleeve if I fly.( that's one of the things I learned- cant remember why but I wear it .)

    Hope you get the information you need.

    Sorry you had to join this group but they are an invaluable source of information!

    Cheers,

    Sherry

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  • Mellie289
    Mellie289 Member Posts: 156
    edited June 2013

    I asked my surgeon about LE. He was very casual and said I didn't need to worry about it. Talked about a patient who had LE and it eventually when away (in a few years). I'm not really happy about that.

    Radiation wouldn't be for another 6 months and I don't want to wait that long.

    As of today, I'm looking into switching doctors to a cancer treatment center and I'm hoping another surgeon, who is located in a breast center, would be more informed on this. I also like the idea of having a nurse navigator, as they do there (not sure what that means entirely, but it sounds reassuring). Having a male surgeon and MO have created big problems in my relationship right now and I need to switch to female doctors if I want to save this (although it may be too late now if the damage is done) - I know, this partly a post for the relationships forum! I might be posting there later about this. I'm not sure if I can switch at this point to just have another surgeon look at my incisions for the followup visit to see how they're healing, but I'm going to try. This has been extra stress that I just don't need in all this.

    Thanks for all the suggestions.

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    Just wanted to follow up on this in case anyone reads this thread looking for answers to the questions I had.

    I met with a new surgeon yesterday at the cancer center. She gave me a referral to a physical therapist in their lymphedema clinic. Thiir usual procedure is to measure the arm before surgery removing lymph nodes. In my case, the decision to remove lymph nodes wasn't made by me, so this wasn't an option. I'm more and more looking back at my surgery with complaints about the way things were handled. No way should the surgeon have asked my boyfriend for permission to do ALND while I was under anesthesia. My new surgeon said they would have used a tracer to identify the sentinel node, which he did not do, so who knows which nodes he even took? Then, his after surgery care, brushing off LE as nothing to worry about since he had a patient that got it and it went away after 2 years. I think I'm definitely in better hands now!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2013

    Mellie, thanks for the update!Cool Really glad to hear you're in good hands. Let us know how it goes.

    Be well!
    Binney

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