Diagnosing truncal lymphedema

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maiyre
maiyre Member Posts: 28
edited January 2016 in Lymphedema

Hi ,

I've posted before about orange de peau appearance on my right breast. Since my symptoms appeared in September, I've had 2x mammograms, 2x ultrasounds, and MRI. I got a call today telling me the most recent MRI and targeted Ultrasound is suspicious and now need a MRI guided biopsy and BC surgeon consultation. My question is wouldn't all these tests be able to diagnose or rule out lymphedema or blocked lymph nodes or scar tissue? I ask bc of symptoms, I really thought it would be related to my bilateral axillary breast tissue removal surgery. Now I'm not sure. I'm not asking for diagnosis but insight from personal experience is greatly appreciated!

Thanks,

Maiyre

Comments

  • LindaKR
    LindaKR Member Posts: 1,577
    edited November 2015

    I don't think that they can diagnose lymphedema with those tests.  I made an appointment with a certified LE therapist, and she is the one that made my diagnosis, she measured, compared, massaged, checked the tissue, skin, etc.... and using all that she diagnosed my truncal LE, which has since moved down my arm to my fingers.  Good luck with everything.


  • jill47
    jill47 Member Posts: 351
    edited November 2015

    Maiyre, While I am years out of bmx/node removals, I did suffer a bad case of bi-lateral breast cellulitis in March this year which was treated w/ oral antibiotic but what it left was LE and orange de' peau & hardened tissue on both reconstructed breasts. My LE therapist explained just like under my right arm lymph fluid is built up in the breasts; she does 1/2 time MLD on right arm and 1/2 time on both breasts. Today I get fitted for a compression bra (PS wrote a prescription). Your current scare does concern me though b/c I had a breast MRI a year ago and a BIRAD's 4a on left breast (lesion was too small to biopsy), U/S didn't pick it up and although promised a 6 month followup MRI, my BS didn't fight for one w/ ins. (oh I did pay out of pocket for the previous one b/c there is a large mass of scar tissue right side which is still here). The cellulitis came at a time where I should of had that MRI follow up.....hum....keep us all posted on your biopsy results.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited November 2015

    Jill, certainly request another follow-up MRI. If the previous one was a year ago, the insurance may be OK with it.

    When I was denied a six month repeat due a birads 3 finding in 2013, I was able to appeal and, because the policy clearly stated that the suggested interval was allowed for more highly suspicious lesions, I won (although there was a delay of 60 days from what the radiologist planned). Things were stable, so no worries.

    For our original poster, the scans I have had note the presence of fat necrosis associated with reconstruction but without mention of lymphedema. My truncal swelling feels better when treated which for me involves wearing compression shirts and using my FlexiTouch machine. Not a real scientific diagnostic method!


  • jill47
    jill47 Member Posts: 351
    edited November 2015

    Thank you for your follow up vlnrph and sharing your experience; I will ask my MO for a MRI script. On the order of the topic truncal LE, while getting fitted for my first compression bra yesterday, I took a sneak peek at my LE therapist case write up, she upgraded me to stage 1 LE from sub-clinical. Not loving the compression vest, while it works compressing my breasts, it is awfully rough in the armpit area aggravating my skin, reminds me too much of post mx bras. But w/ time and a little body glide hopefully I love it like my sleeve. Compression shirt? I'll look that one up.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited November 2015

    my LE was diagnosed by my BS based on my mammogram. Believe me, it can be seen. I went for a biopsy a year or so after the diagnosis and remarked to the surgeon doing the biopsy and she said oh yes I can see it! when she pointed it out, it was clear to this rookie! it showed up like a dif colored layer on the screen and was all around my poor boobie!

  • maiyre
    maiyre Member Posts: 28
    edited November 2015

    Thank you for sharing your experience with me. I'm concerned now, because after all these tests I don't have a diagnosis. When my symptoms first appeared my PS said it wasn't lymphedema or surgery related. She ordered the mammogram and US and 2 rounds of antibiotics. My mammogram / US results came back only showing "thickening". My symptoms persisted and I pushed for a test that could provide me with a definitive diagnosis of truncal lymphedema so I could get a referral to LE specialist. She put in the request for MRI, tests came back with a suspicious area opposite side of the breast. They requested another US but targeted to the area the MRI picked up. That US confirmed suspicious area also. Now I'm going in for an MRI guided biopsy. My symptoms are similar to IBC and truncal lymphedema, (mastitis was ruled out) thickening, orange de peau, pinkish reddish , indentation, Dimpling from bra only on the breast, warm, not painful(sore) or heavy. No swelling in arm or back, or breast. Symptoms persist.
    I have an appt with BC surgeon in the 12th and should hopefully know more about what they saw on the tests and what they think is going on. Thanks again for all your info and sharing your experience and knowledge on the subject.

    Maiyre
  • eggroll
    eggroll Member Posts: 150
    edited November 2015

    I had several hours of meetings today for work. Some driving. I opened a door or two that really hurt. I bumped my side getting out of the car and almost dropped to the ground in agony. I'm exhausted and going to bed. I noticed the lymph node by my collar bone is swollen besides all the pain on that side from my shoulders down to my legs. This lymphedema will get better right? 19 days after sentinel node biopsy and it hurts the worst yet. First appointment with the clinic is tomorrow. I hope they can do something.

  • hugz4u
    hugz4u Member Posts: 2,781
    edited November 2015

    if you were diagnosed with lymphedema then you should see your therapist ASAP and ask what's going on.Your swollen node is a concern, perhaps a doc visit is in order also.

    It's odd though that you have pain from the shoulder to down to legs as LE usually is affected by quadrants. For example my right arm LE affects my right side of my body from the shoulder down to below the waist on that side but not the leg.

    Sitting at a meeting always causes fluid build up for me. I have to get up after two hours and move around to stimulate my lymph system otherwise I get pain and build up

  • LymphActivist
    LymphActivist Member Posts: 64
    edited January 2016

    Maiyre-- A couple of comments on your issue regarding diagnosis of truncal and breast lymphedema. These are typically diagnosed by either ultrasound or MRI measurements of skin thickness. Normal skin thickness is about 1.5-2.0 millimeters. Much more than that is usually an indication of excess interstitial fluid = lymphedema. See Johansson 2014 on my web site at http://www.lymphactivist.org/review-johansson-2014.php. This technique is used in Europe. I believe that Dr. Emily Iker in Los Angeles uses it. Another method of lymphedema diagnosis is measurement of the fluid content of the skin at 2.5 mm depth. This can be done with a device called the MoistureMeter-D made by a Finnish company Delfin. I agree with your initial assessment that the truncal/breast lymphedema could have been related to your axillary breast tissue surgery. That region is rich with lymph nodes and lymph vessels which drain lymphatic fluid from the breast, back, and arm, and removal of as few as one node with the tissue, if it is in the drainage path of the breast or arm, would explain lymphedema. See Baker 2014 on my web site at http://www.lymphactivist.org/review-baker-2014.php. Scar tissue could also block the drainage path, and this might be treatable with low level laser treatments or skillful physical therapy.

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