Another breast lymphedema question

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

    Juniper, I'd say you could wait, since that's not too long (where has this month gone?!!) But do keep an eye on this. If you find it getting larger and more worrisome, do call for an earlier appointment. The other issue to be aware of is the possibility of a cellulitis infection. Here's information on what to watch for:

    http://www.stepup-speakout.org/Emergencies_and_Med…

    Be well!
    Binney


  • Llroseworld
    Llroseworld Member Posts: 23
    edited May 2016

    I go see a specialist for the breast lymphedema cellulitis tomorrow. I pray they can help this go away. I can't begin chemo till it is gone.


  • Llroseworld
    Llroseworld Member Posts: 23
    edited May 2016

    thank you so much! Tomorrow is my first therapy appointment to begin this process!



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

    Juniper, see someone sooner--LE therapists tend to be at a med. ctr.’s OT/PT dept.; a physical rehab medicine MD might also be a good place to start. (My LE doc, Joseph Feldman--who founded LANA--is officially listed as a Physiatrist in both the Rehab medicine and Neurology depts.). But out of left field....do you have osteoarthritis (either age-related or from joint trauma)? Reason I ask is if you have an arthritic elbow, that egg-shaped lump could be a Baker’s Cyst (you normally see them in the crook of the leg, behind an arthritic knee). It is fluid from inflammation that has migrated from the front articulating surface of the joint itself to the tissues behind it, on the back of that limb. Though a Baker’s Cyst is filled with lymph fluid, it’s not LE. It usually resolves on its own, especially with NSAIDs--but sometimes needs to be drained (in which case, take infection precautions and have an LE therapist wrap your arm immediately after the procedure.. LE would probably cause your arm to swell over a much larger area.

    I had Baker’s Cysts behind both knees until the joints were replaced.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited May 2016

    Sandy, thank you for your reply to my post. I don't have osteoarthritis (those Baker's Cysts sound uncomfortable); and the swelling seems to be confined to that one area...I noticed it yesterday and am hoping it will go away. I will take your advice if it doesn't.

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

    You can also inflame a joint just by extreme impact--say, bumping your elbow hard. The body sends fluid rushing to the site to immobilize it, and if there’s either too vigorous a fluid response or not enough room in the joint capsule and between articulating surfaces, the fluid migrates to behind the joint--voilá: Baker’s Cyst.

    See a lymph specialist pronto. If it is LE, you want to get a jump on it. Or you could see an orthopedist who can verify whether it’s a Baker’s Cyst. Either way, see someone before you see your MO (that isn’t in the latter’s wheelhouse anyway).

  • PatRN10
    PatRN10 Member Posts: 332
    edited May 2016

    I guess I need to clarify. She did show me the touch etc briefly but then had me do the massage and confirmed I was doing it right which is appropriate. I guess my question should have been do any of you go regularly to the LE therapist to have her do the drainage in between your own massages? Or only if your massage isn't working?

  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited May 2016

    @PatRN, My visits to the LEPT have been for new issues only. At the beginning I went 2x a week for 6 weeks to learn how to do MLD and again when my arm started to show signs of developing LE to learn how to cope with it and where to get LE supplies. I am confused by what seems to be ongoing MLD by a therapist that is mentioned in some LE Lit and by some woman that post here. It would concern me but I'm doing OK so I'm guessing it's an individual thing?

    It seems that the standards in LE care aren't very standard.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited May 2016

    Hello! I am a bit perplexed. I went to my doctor today for two reasons: poison ivy on my right arm and a egg shaped lump that appeared a few days ago in the crease of my elbow on my left (BC side) arm. The lump recedes at night and gets more pronounced during the day. It doesn't hurt and the swelling is contained to that area. The doctor said it is an early manifestation of lymphedema. I'm perplexed because I don't feel discomfort from it. I thought that LE generates more symptoms other than localized swelling (large lump). Any thoughts about this from you guys would be greatly appreciated. Many thanks!

  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited May 2016

    @Juniper, Catching LE early, can make a difference in living with and dealing with LE. Some of the symptoms of LE can be managed and even avoided by early diagnosis. To often Doctors are slow to diagnose (or admit) that a person has LE, patients are sometimes poorly educated on LE and don't recognize what's happening, and some patients don't have access to a Dr. that is well informed and go to long without proper treatment. It can take months or even years to deal with the problems caused by an incorrect diagnoses. Those of us "lucky" enough to be diagnosed early have a better chance of avoiding some of the worse symptoms.

    This is a great site: http://www.stepup-speakout.org/

  • JuniperCat
    JuniperCat Member Posts: 658
    edited May 2016

    Hi, Susan! Thank you so much for responding to my post! Do you know if there a way to test to see if it actually is early lymphedema? It isn't red, nor does it hurt. The doctor seemed to be sure that that is what it is simply by looking at it. That surprised me a bit


  • PatRN10
    PatRN10 Member Posts: 332
    edited June 2016

    Are you having a lymphedema therapist consultation? Some times measurements between the arms can be a clue. My breast lymphedema also comes and goes like your arm lump.

  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited June 2016

    @JuniperCat The oncologist diagnosed my LE by exam and appearance. My rads oncologist disagreed and while I preferred her opinion she was wrong. You should see a LE Physical therapist. Your BS or RO should give you a referral or in many cases set up the appointment for you. I was trying to remember how my LE felt at the beginning and the one thing I remember is that when I sat up in bed I had to put pressure on my breast to keep it from hurting, I had forgotten that, I did the same thing for pot holes, railroad tracks and fast stops when in the car.

    I wrote in another post that I had a mammo recently that the BS said showed an improvement in my breast LE. The Mammo from a year ago was slightly hazy and a lighter grey tone. I haven't read any other posts about Breast LE being visible in the mammo's, so I'm still a bit baffled by it, turns out it may actual be visible. You should ask.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited June 2016

    Hi, Pat and Susan. Thank you so much for responding to my post. I will ask my BS next month what she thinks. It's so odd, I'm not sure that it is LE because I'm not experiencing pain or discomfort. It recedes during the night and becomes apparent during the day and at its largest it is like an egg shaped lump. I consulted Dr. Google (I know, I know....not wise) and now I'm wondering if it is a lipoma, though I don't know if a lipoma changes like that. When you first noticed your symptoms did you experience anything like this? Many thanks for your thoughts! Hugs

  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    Hi everyone. I don't have lymphedema but I'm terrified of getting it. Since my BMX a year ago I've had a problem with infections both systemically and locally. I've had 2 different paper cuts on my fingers that got infected and I had to take antibiotics. This is my issue...both times I had the cuts I had to plead with docs to put me on antibiotics. Both times I called my breast surgeon and was told I should call my primary doc. One time I was told "why are you calling a breast surgeon for a cut on your finger?!". Just don't understand why breast specialists are so unconcerned about lymphedema??? Anyway I'm going to see a lymphedema specialist for more tips on prevention. What do you guys think?

  • PatRN10
    PatRN10 Member Posts: 332
    edited June 2016

    Hi Juniper,

    Lymphedema can be painless. Here is a great link from Johns Hopkins.

    http://www.hopkinsmedicine.org/healthlibrary/condi...,P00148/

    I'm not a doctor but I don't think a lipoma would change like that because it is a distinct fatty mass where lymphedema is fluid which could fluctuate.

    There is no test for lymphedema per se but if it were me, I would ask your PCP that you saw for a referral to the lymphedma therapist for a full assessment. Why wait for the BS if you PCP thinks it may be LE? My only sx at first was just some mild creases in my breast from my bra which progressed to pain very quickly.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited June 2016

    Thanks, Pat. I will call the doctor today and ask about that. Also, thank you for the link...I will read it with great interest

  • JuniperCat
    JuniperCat Member Posts: 658
    edited June 2016

    I just read the article and this jumped out:

    "The most common type of lymphedema is painless and may slowly develop 18 to 24 months or more after surgery."

    That really surprised me.

  • PatRN10
    PatRN10 Member Posts: 332
    edited June 2016

    Yes! That is surprising. One would think if drainage was fine up until then you are in the clear but guess that's not the case. For me, i had a big seroma under my arm for 2 weeks post op which resolved with compression and heat. Everything was fine until 5 months post radiation when I noticed the small creases in the breast.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited June 2016

    yikes...the gift that keeps on giving


  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited June 2016

    @Dtad I hope that you find a way to relax about LE. If you don't have it, count yourself lucky. Prevention is iffy right now. Even the cause, beyond node removal, of who will be or wont be affected isn't known. An infection didn't cause me or anyone I know to develop LE, however an infection for a person with LE can be a very serious situation. Antibiotics are not going to keep a person from developing LE. There are some tips that may be helpful such as not sleeping on the effected side, avoid shots and Iv's on that side and take good care of your skin by moisturizing every day. Maybe the person you will be seeing has answers that I don't know about.

    Cancer and the treatment for it is enough stress without adding more. Unless you develop the symptoms of LE you might want to cross that problem off your list.

    I hope the best for you.

  • websister
    websister Member Posts: 1,092
    edited June 2016

    Hi everyone - I found this thread through a search and have been reading through the posts - very interesting and I'm also going to check out the links you have provided to others.

    My story is that I had my right mastectomy almost 4 years ago with 27 lymph nodes removed. I had six months of chemo, continued on Herceptin until Oct. 2013, I also had radiation. I was provided with a lymphedema sleeve and glove for traveling. I've had no problems with lymphedema and not sure that this is what is going on now but this morning when I was showering I noticed that there was a lot of fluid pooling in my right elbow region. My arm feels kind of heavy and achy but no other swelling and no fever. I wore my sleeve and glove today - I will remove tonight and see if it helped. Any other advice for me?

    Thanks

  • glennie19
    glennie19 Member Posts: 6,398
    edited June 2016

    websister: sorry that you are having problems. My suggestion would be to call one of your doctors and get a referral to a certified lymphedema therapist. Arm feeling heavy and achy and fluid pooling around the elbow could be LE. And you want to be sure that your sleeve & glove are still the right size too.

  • hugz4u
    hugz4u Member Posts: 2,781
    edited June 2016

    websister, that sounds like lymphedema. If it's better in the morn but swells as the day progresses thats a sign. If treated ASAP you will have better control down the road.sure hope you get it looked at. Google stepupspeakout.org to learn all you can and to find a qualified therapist to check you out.


  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    Susan....thanks so much for responding. I'm a health care professional but still very confused about lymphedema. Doctors seem to know very little about it or have conflicting opinions. I never really worried about it until I got these 2 infections on my fingers. It seems overtime I get a cut now it gets infected. Not lymphedema related? I thought all skin infections need to be treated. Sorry still confused. Anyone?

  • PatRN10
    PatRN10 Member Posts: 332
    edited June 2016

    websister: Ditto all the advice above!

    dtad, I agree that no one wants to take ownership for LE. I would definitely see the LE Therapist for a game plan. I would ask her to write up her finding and send to your PCP and BS and recommend treatment plan for the cuts. I would then ask your BS to send a protocol to your PCP for treating the cuts including when to refer back to him/her.

  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited June 2016

    @dtat...We are all confused about LE! And you absolutely right the professionals don't want to deal with it. My RO wanted my BS to write the referral to the LE professional so she wouldn't have to and vise versa.

    I should have added this: When you see the professional or your BS ask to be measured . That is your best tool for catching LE early. This is one of the issues Kathy Bates is pushing for and it shouldn't come as a surprise to your BS that you want it done.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited June 2016

    Hi, again. I am wondering if LE symptoms are constant or if they come and go. For instance, this lump in the crease of my BC side elbow is always there, however, it is hardly noticeable at night and quite prominent during the day. Thank you for thoughts and insights!!

  • glennie19
    glennie19 Member Posts: 6,398
    edited June 2016

    yes, there can be an ebb and flow to the symptoms. First thing in the morning,,, I'm not swollen at all,,,, as the day goes on, I will swell more.

  • LymphActivist
    LymphActivist Member Posts: 64
    edited June 2016

    Symptoms of breast pain, redness, sensitivity, swelling, "peau d'orange" etc. sound like "breast lymphedema", a common result of removal of lymph nodes for diagnosis and/or treatment of breast cancer. This condition is also called "breast edema" or "delayed breast cellulitis" in the literature, because it often does not exhibit until years after the surgery and/or breast irradiation. Contrary to what your oncologist may tell you, removal of as few as 1-3 "sentinel lymph nodes" can cause this condition if those nodes are in the upper-outer segment of the breast, since the majority of the breast lymphatic drainage takes that route. Treatment is primarily manual lymph drainage by a qualified lymphedema therapist and to a lesser extent than with arm lymphedema, compression. See "Breast and Truncal Lymphedema -- Its Nature and Treatment" on my LymphActivist's Site at http://www.lymphactivist.org/breast_lymphedema_for_therapists.pdf

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