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Katz63
Katz63 Member Posts: 28
edited June 2014 in Lymphedema

Hello there,

Further to my previous post, I am now scheduled for an 'urgent' axillary lymph node biopsy next week after the long weekend.  I had 3 rounds of antibiotics, the boob is definitely better, less swelling, pain and redness but still pink, swollen and tender.  There is a 'spiculated node 1cm' which was present in March and is the reason for biopsy.  So I wonder if anyone has some answers for me:

  • My blood results revealed low neutrophils and white cell count, no infection present (but I was on antibiotics when blood was taken so will it still show up?)
  • If I am not experiencing infections, does lympedema cause excessive redness and pain resulting in need to take panadeine forte?
  • My arm on affected size does not swell, is this normal?
  • What sort of lymph node biopsy is best, core or needle aspiration

Thank you I would be grateful for anyone's comments who have experienced this as naturally my concern is mets.

Hugs to you all.

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    katz, I'm no help with your questions, so I'll just post my concern and hope for you that it's not mets, and my little post will keep your topic high in the LE list to help make sure its visible to those with more expertise.  Best wishes. I'm so sorry you have to live with this uncertainty and worry.

    Carol

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

    Katz, how worrying!Frown

    I sure can't answer all your questions, but I can tell you that because LE is an inflammatory condition it sometimes causes redness in the chest or breast that is NOT an infection when truncal lymphedema is present. Truncal lymphedema can also be extremely painful, usually a kind of nerve pain that doesn't respond well to most pain meds. The pain can also seem to move around the area and be hard to pinpoint. In the case of truncal LE, both the redness and pain are usually helped by proper therapy--Manual Lymph Drainage, compression, skin care, gentle exercise. For many the redness completely resolves, but for some risidual pinkness remains. For myself, pain is completely resolved when the area is free of excess lymph fluid and swelling, but the pain returns when I have a flare.

    It is possible to have truncal lymphedma without any arm involvement, and many women here deal with that. Doctors, though, are often not familiar enough with truncal LE to know that.

    Here's information about truncal LE that might be of help to you:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    And here's a page of LE information for doctors, written by a doctor with LE:
    http://www.stepup-speakout.org/essential informat for healthcare providers.htm

    The best node biopsy is the one that does the least damage to the node and leaves it operational.

    Please do let us know what you discover, and know you'll be in our thoughts as you wait out yet more testing.Tongue Out

    Gentle hugs,
    Binney

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  • Katz63
    Katz63 Member Posts: 28
    edited June 2013

    Thank you Carol57 and Binney4, I really appreciate your comments and support.  I will let you know what we find, worst part as always is the waiting.... doesn't help that it's a long weekend here :( Oh well thanks again and I will post sometime next week no doubt.  Hugs to you both Innocent

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  • purple32
    purple32 Member Posts: 3,188
    edited June 2013

    Katz

    I have been dealing with a redness in the chest area...not sure yet if it is LE related ( though I do have truncal and ... LE)

    You asked : My arm on affected size does not swell, is this normal?

    Not totally out of the question!  You may want to ask Carol57 because I do not believe her arm normally swells ( but does ache) with her LE.


    Best of Luck to you- please keep us posted.

    EDITED TO ADD:  This is a very informative ( and trusted ) link on truncal LE. If you check out the OCT 2011 post there,  it includes an add'l link with loads of info. http://www.lymphedemablog.com/2011/10/05/lymphedema-affecting-the-breast-and-trunk/

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  • Katz63
    Katz63 Member Posts: 28
    edited June 2013

    Hi Purple32

    I will check this out, and thank you so very much.  The links from Carol57 were also excellent!

    Hugs

    Katz63

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  • Katz63
    Katz63 Member Posts: 28
    edited June 2013

    Hi ladies, well here is my update.  I saw by BS Wednesday who ordered u/s biopsy of thickened area which he marked and lymph node biopsy. They couldn't find the l/n again, so aspirated an ?oil cyst which was in same area as thickened area. BUT when I got home realised the cyst was not in marked thickened area so had not been biopsied grrrr! Am now waiting to have this biopsied. My BS keeps telling me 'all cancer is gone, stop worrying', easy for him to say when he's not living these constant 'infections, pain, etc'! I am sick of not being able to live my life!  On the good side I spoke to abreast cancer care nurse  today who was excellent and reassured me this was not normal and suggested I see a microiologist and another surgeon for another opinion. So am now waiting for a referral for this.  HugsInnocent

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    Katz, how frustrating that the biopsy missed the area in question, but it's good you're continuing the investigation, so at least you know that some answers will surface soon. Hang in there. This must be very, very hard.

    Carol

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  • Katz63
    Katz63 Member Posts: 28
    edited June 2013

    Yes Carol57, very frustrating and thanks for your post.  I have to wait for the B/S to contact me re my results of aspirate then get another appt. for other biopsy.  I think I'm going to get that done, get a referral to microbiologist and probably another referral back to the clinic I was originally diagnosed at for a second opinion. Hope you are going okEmbarassed

    Katz63

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  • Katz63
    Katz63 Member Posts: 28
    edited June 2013

    The longest week ever.... I have another appointment for an ultrasound and biopsy next week.  So hard trying to fight for investigations when you are in the country.  Would be so much more reassuring if I had a surgeon who was genuinely concerned.  Does anyone else have low white cell and neutrophil counts with lymphodema?  This is crap, so stressful on my hubby and I.... :(  Hugs to all of you, I always did hate the c word!

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