New to LE, feeling a little lost....

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cinnamonsmiles
cinnamonsmiles Member Posts: 779
edited June 2014 in Lymphedema
New to LE, feeling a little lost....
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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited July 2012

    The moment I awoke from my BMX w/node dissection, I was in HORRIFIC amounts of pain. Over the last 18 months, I have learned soooo much about post mastecomy pain syndrome/neuropathy from nerve damage during the sugery and severe scar tissue adhesions.

    LE is throwing me for a loop. I feel lost. I don't totally trust my LE therapist, but it is slim pickens in my area for ANYONE to treat it. 

    I feel so confiedent about know my PMPS and so lost with LE. I am so tired and having problems getting the oomph to learn about it. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012
    Well, Cinnamonsmiles, you and I seem to have crossed paths along the pain trail. It's late, and I need to put myself to bed, but I just wanted you to know that this is a great forum to find support and info. Here's a link to the StepOut-SpeakOut site, where there's accurate and current info. The ladies here are wonderful. Kira and Binney are are a fount of knowledge!




    http://www.stepup-speakout.org/
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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2012

    Cinnamon,

    When you're up for it, there's a ton of great info on the main Breastcancer.org site on Lymphedema, including the many Lymphedema Treatments and Finding a Lymphedema Therapist.

    So sorry you're dealing with this, but hoping this helps,

    --The Mods

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  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2012

    Cinnamon, we all feel that way, I think, when we first have to deal with LE. It's such a steep learning curve, such a blow to the desire to put breast cancer behind us, and I found I had to advocate and fight to get decent care.

    We created the step-upspeakout site to pull together the collective wisdom of the people on the boards, and Binney. It needs updating, but the basics are there.

    I used to read the page by Pat O'Connor on emotional coping with LE and it resonated. Pat has primary LE, and founded lymphademapeople site.

    http://www.stepup-speakout.org/patoconnorcopng.htm

    Recently Brazos wrote how long its taken her to adjust to LE, and I think it's kind of a lifelong adjustment. It's a weird disease: no one "owns" it, there are few physicians who treat it, we're at the mercy of therapists who have various degrees of knowledge, and insurance covers a fraction of the cost. And it impacts us and our entire families.

    Binney always talks about grieving when you get LE, and to take your time. And there will be times you're up for the fight, and times you need to lay low.

    How can we help?

    Kira

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Kira, thank you for posting the link to Pat O'Connor's essay. I know I have read some of this before, but it really struck me differently today. Clearly, I am in a different place emotionally and mentally. I recognize much of what is required in learning to live with LE, can see that I have been within this process from the time I was officially diagnosed and began treatment. I found myself a little teary at moments reading this, as it truly hits home in many ways. It describes and validates the emotions I have felt, and it allowed me to see from an objective view that I am actually doing well in coping, despite how I may feel at times. I only had the chance to read several segments, and I am looking forward to reading the rest of the essay. Powerful stuff.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    bump for Mitch50

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited August 2012

    I guess I am just disgusted that it has taken me so long to find someone to treat it. Now I am at the mercy of Medicare. I can't afford the sleeves the LE therapist ordered for me. I need a really large size.

    I only had DCIS (  but a lot of it, hence the double mastectomy) and I wanted to make sure I did all I could to get rid of the cancer,which is why I had the sentinel nodes removed, why the breast surgeon took out one axillary node I will never know since she moved from WI to TX. It should have been an "easy" cancer and easy surgery. Now I have LE, and PMPS. I have learned that nothing about cancer is easy.

    Part of me thinks, that I really don't need therapy for my LE. I have been living with it for over a year now without treatment. I wonder if it is really necessary?

    Thanks so much for reminding me about the step up speak out website.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited August 2012

    Cinnamonsmiles, we have crossed paths before, and I do understand what you are saying. There is no lymphedema therapist here that i completely trust too. I read the articles on how to find a specialist, well, this area has none if I go by that.

    To me it is all very confusing. My fingers on my affected side have gone up 2 ring sizes since the surgery. I get hard pockets that are tiny, like a tiny hard lump under the skin, and the doctor brushes me away, yet they change when I do the manual lymphatic massage.

    I would like someone to just tell me what to do, like when to wear the sleeve, and what about nighttime. I am told to only wear the sleeve/gauntlet for exercise.

    I am an artist and I worry about losing use of my hand for detailed work.

    And I don't know who to even ask these questions. I will try again tomorrow to ask my breast surgeon who is the doctor who watches over me.

    I appreciated your post and all the information presented. I sort of feel like I will have to walk in the doctor's office with my arm twice the size to be taken seriously, and I would only hurt myself if I waited and did nothing while that is happening.

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

    Cinnamon and Crystal, I hate that you're both finding it so difficult to get good care. So many of us have had the same lousy experience. Too often we have to become our own "experts," and that's never a good feeling.

    The trouble with not staying on top of it, Cinnamon, is not that it will get bigger--it probably won't. It's what goes on inside when the lymph fluid is sitting around stagnant in the tissue that's the problem. The changes that occur inside include fat being deposited abnormally just below the skin, which creates inflammation that over time results in hardening of the tissues, causing further damage to the lymphatics and increased risk of serious infection. It also eventually limits both strength and range of motion. 

    The problem is making our health-care providers aware of the seriousness of this medical condition, and it still takes my breath away that the job of educating them should fall to us. But it does. Crystal, you might try copying off the Position Papers from the National Lymphedema Network for your doctor and asking to go over them with him. There are two on BC-related LE and one on Treatment that could be useful for that. You can find them along the right-hand side of this page:
    http://www.lymphnet.org/

    Let us know how it goes. We'll be here rooting you you. Hugs,
    Binney

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited August 2012

    Binney, can the fluid build up affect our nervous system? I have noticed that at night when I sleep with my wrists bent, my hands go numb and get the pricklies feelings. My now fired neurologist said that it is my inflammation of the vessels (small vessel syndrome) that is doing it. Now I wonder if the swelling of the blood vessels throughout my body and the combination of LE in both arms is doing it...

    Once again, I am so sorry you are all going thru this, but so glad you are here to help.I would be lost without you. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012
    Cinnamon, I don't know the answer to that, but it wouldn't seem impossible to me. Lymphedema is an inflammatory condition, and there's just so much about it that researchers don't even know. All the discoveries they make, though, lead them to realize there's more and more involvement of the lymph system in so many aspects of our health. It will be interesting to see if gaining real control of the lymphedema lessens your symptoms. Let us know what you discover! (As soon as you're diagnosed with lymphedema you become an honorary scientist and researcher--better get yourself a lab coat!Laughing)
    Be well!
    Binney
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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited August 2012

    WOW, thanks for the honorary degree!! I already have one for pmps, now le. Thanks for helping my find some humor in this all.

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  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2012

    What is mld?

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  • hotandcold
    hotandcold Member Posts: 205
    edited August 2012

    MLD is manual lymph drainage. It cn be done by a therapist on you or you can do it yourself to yourself. There are videos on You-Tube. Perhaps Binney or Kira can recommend the best ones.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    bhd1/Barb--MLD is manual lymphatic drainage, a type of light massage that helps the lymphatic fluid drain into other nodes that are working.

    It's both done to us by lymphedema therapists, and we are taught a version to do to ourselves at home.

    Here's more information about it, and please let us know if you need anymore of these acronyms clarified:

    http://www.stepup-speakout.org/manual_lymphatic_drainage_massage_lymphedema.htm

    It's confusing stuff.

    Kira

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited October 2012

    Well, the LE therapist dismissed me last month I think. As she was walking out the door of my LE room, I asked her if I needed to make more appts. she said no, but to call if things get worse. She did NOTHING for the cancer rehab program that my doctor gave me a prescription for.Quite frankly, I wouldn't want her anyway. As I have been telling on here, I had to read on here then tell the therapist. She was not giving me sleeves NOR having me do anything at home until I spoke up. I realize we didn't mesh as people, but I still deserved better service than what I got.

    Crystalphm: I think it is worse for us that have mild LE to get treatment based on my own experiences. I told the therapist I saw for scar tissue adhesions for months the symptoms of LE I had and she ignored them or didn't "hear" me until the last session (although she took arm, hand, and finger measurements all summer). 

    My breast surgeon left the area. She had a note in my file a year ago that she wanted to see me in 3-4 months. She and the staff neglected to tell me! I don't have the need for an oncologist and the one I saw last year for a consult told me that since I had DCIS and a BMX, there was no need for me to see anyone else, that my family dr. could keep track of me. Well, my family doctor doesn't feel comfortable. What a frikcing mess. 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2012

    Cinnamon--I met with Tina the other day and we shared how because we don't have a huge amount of swelling we've been blown off by LE physicians and experienced LE therapists.

    I had one woman--highly trained--email me that "you have swelling, but it's not LE as it's not 2 cm in swelling"

    The 2 cm rule has no basis in science, just convenience.

    We've called this "Denying our reality"

    And, the fact that I treat my LE: wrapping every night and wearing compression as needed, no I DON'T have 2 cm of swelling, but I DO have LE.

    I was at a national LE board meeting, and one highly experienced therapist looked at my arm and said "you don't have LE", and it was in bad shape as I'd flown in, eaten salty food, slept in a hot hotel room, and then she felt my arm and said "OMG, you have LE! If you don't treat it, you'll get cellulitis!!!" Duh.

    Tina and I also talked about how I was trained as an LE therapist, and thinking of the other women in my class, only a few were ready to really treat patients without supervision, despite taking the full 135 hours of training.

    My PCP doesn't know much about LE, but she'll write scripts for me.

    It is a fricking mess.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited October 2012

    Cinnamon...I have the same diagnosis as you. I see the gyn every year for a professional checkup...(what ever that means, he just pushes around)...and then my breast surgeon once a year.

    In your case, I suppose you would want to find a new breast surgeon for your check-ups. I don't see an oncologist either. But how stressful it all is.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited October 2012

    Thanks for letting me know that you guys have the same problems,too. I really don't understand that medical community on how they can be so smart but so dumb.

    And this 2 cm rule? Is it supposed to be the difference between the arms? What the hell? What if both arms have mild LE and similar swelling. What about truncal LE? Thank goodness the LE therapist I saw noticed it. 

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