Do you have Truncal Lymphedema? My Survey-Please reply

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Dejaboo
Dejaboo Member Posts: 2,916
edited June 2016 in Lymphedema

I am curious as to who has Truncal LE. I am wondering if it happens more often when a Mastectomy is done

Here are my questions: Thanks!

1. Did you have a Mastectomy or Lumpectomy

1a. double or single mastectomy

2a Did you have reconstruction? What kind?

2. Did you have radiation?

3. Did you have a SNB or Axillary Dissection?

3a. How many nodes removed

4. Do you have Arm Lymphedema also?


Mastectomy: IIIII~IIIII~IIIII~IIIII~IIII

Single: IIIII~IIII

Double: IIIII~IIIII~IIIII~II

Lumpectomy: IIIII~IIIII~I

SNB: IIIII~IIIII~IIIII~IIIII~I

SNB Nodes Removed: 1, 6, 4, 14, 4,4,5,7, ?,3,4,1,3,1,3,5,1,6,2/2,1,4,4

Axillary: IIIII~IIIII~IIIII~

Axillary Nodes Removed: 15,16, 24,12,18,19,6,11,10,10,16,12,29,9,9

RADS: IIIII~IIIII~IIIII~III

No RADS: IIIII~IIIII~II

No Reconstruction: III

Reconstruction: IIIII~III

Expanders/Implants: IIIII~

Immediate Implants: I

DIEP: I

SGAP: II

No Reconstruction: IIIII~IIIII~I

Arm & Truncal LE: IIIII~IIIII~IIIII~IIIII~IIIII~II

Truncal LE alone: IIIII~III

Truncal & Both Arms: I

Cording: IIIII~IIII

Excess Skin: IIIII

Seromas: IIIII~II

Cellulitis: IIIII~

Hematoma-I

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Comments

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited January 2016

    1. Did you have a Mastectomy or Lumpectomy- Mastectomy

    1a. double or single mastectomy- Double

    2a Did you have reconstruction? What kind? Yes, Implants then SGAP

    2. Did you have radiation? No

    3. Did you have a SNB or Axillary Dissection? SNB

    3a. How many nodes removed 1

    4. Do you have Arm Lymphedema also? Yes Arm & Truncal

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  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited January 2016

    lumpectomy

    no reconstruction

    yes radiation

    SNB

    1 node removed

    I have started to develope Le in my upper arm

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  • Kathy044
    Kathy044 Member Posts: 433
    edited January 2016
    1. Lumpectomy combined in same surgery with

    3. Level l and ll ALND
    ( seroma and cording following surgery)

    2. Radiation: 16 sessions

    3a 15 nodes

    4.yes arm

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  • bluepearl
    bluepearl Member Posts: 961
    edited January 2016

    mastectomy 2

    left arm 7 nodes, right arm SNB 3 taken

    no radiation

    no chemo

    lymphadema in left arm at wrist.

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited January 2016

    Thank you for your replies Ladies.

    Keep in mind that I am looking only for those that have Truncal Lymphedema Or Truncal & arm LE.

    Not for those that only have arm LE But Not truncal

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

    Mastectomy-- single

    No recon

    No rads

    SNB - 6

    Truncal and arm

    Also wanted to add,,, my BS left me unwanted excess skin. I was wondering if that could play a part in trapping lymph in the chest area. So I'm just throwing that into your survey.

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited January 2016

    Thank you gleenie19!

    Yes, I would love to hear side notes such as your excess skin

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

    Seems like I read somewhere,, that the excess skin could cause a blockage,,, so I'll be interested to hear from others. I've been thinking about getting it removed,, but don't really want another surgery. But if it might help the LE,,, I would do it.

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  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited January 2016

    I have excess skin but not from surgery. 5 years before surgery I lost 70 lbs and there is excess skin from that, hmmmmmm.

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  • kmpod
    kmpod Member Posts: 234
    edited January 2016

    Mastectomy - bilateral, left prophylactic

    No recon

    No rads

    Right SNB- 4 Left 0

    Bilateral truncal and arm - right side worse than left

    Excess skin - yes, more on right side. My LE therapist has remarked that my excess skin seems to act like a "trap" for the lymph

    I developed the LE about 3.5 years post BMX. I wasn't very surprised to see it show up. Post surgically I had persistent seromas that had to be aspirated for a period of about 3 months, bilaterally. I've read that that is a significant risk factor for LE.

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

    kmpod: I had a seroma that needed draining a few times too. Also some cording,,, more possible risk factors.

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited January 2016

    Dejaboo - I hope to hear the results from this survey.

    Yes, lumpectomy

    No reconstruction

    Yes radiation

    1 out of 14 nodes removed, cording that resolved eventually

    No excess skin, truncal LE immediately after surgery and upper arm LE after surgery

    Gave up wearing bra, now wear camisoles

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited January 2016

    Mastectomy. Left side only.

    SNB, 6 nodes removed. Visible cancer in 3 of them.

    No recon, no extra skin.

    Yes radiation, lots of it.

    No visible swelling in arm, yet.

    Had one smallish seroma at the bottom edge of scar, appeared after drain was removed, not big enough to be drained. Doc said it would eventually go away. Still waiting. It's only quarter-sized now.

    Cording appeared 2-3 weeks after surgery. Found out later that raises risk of LE too.

    Truncal LE appeared suddenly the day after a PT tried to massage away the cording. The swelling is just above the top end of scar, right in front of armpit. It's roughly palm-sized. It fluctuates up and down in size for no apparent reason. Nothing I do seems to have any effect on it. (MLD, compression, etc.)

    Edited to add: have never had cellulitis



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  • jill47
    jill47 Member Posts: 351
    edited January 2016

    1. bi-lateral mastectomy

    2a Did you have reconstruction? Yes What kind? TEs to Implants (silicone/gel)

    2. Did you have radiation? No

    3. SNB 4 nodes

    4. Truncal and right arm

    no excess skin.

    1st cord found by CLT last month, still here, near right drainage scar.

    Dejaboo - might be interesting to find out about # of cellulitis infections in trunk & how long dx w/ truncal LE post node removal. My answer, One case of bi-lateral cellulitis, 2 1/2 years post bmx and pre-LE dx.

    Good survey, thank you for doing this.

    Jill


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  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited January 2016

    1. Did you have a Mastectomy or Lumpectomy - Mastectomy

    1a. double or single mastectomy - Single

    2a Did you have reconstruction? What kind? - No reconstruction

    2. Did you have radiation? - Yes

    3. Did you have a SNB or Axillary Dissection? -AD

    3a. How many nodes removed - 15

    4. Do you have Arm Lymphedema also? Yes, but the trunk is more severe

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2016

    1. Did you have a Mastectomy or Lumpectomy MX

    1a. double or single mastectomy Bilateral for bilateral CA

    2a Did you have reconstruction? What kind? No recon

    2. Did you have radiation? Bilateral chest wall & bilateral axilla

    3. Did you have a SNB or Axillary Dissection? SNB both sides

    3a. How many nodes removed 4 on my problematic side & 5 on the other

    4. Do you have Arm Lymphedema also? "latent" because of symptoms, but not visible

    No extra skin. I had cording, for the first 2 yrs after surgery. I just didn't know what it was. The physical therapist, my BS referred me to for my tuncal edema, successfully massaged it away.

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  • doxie
    doxie Member Posts: 1,455
    edited January 2016

    1. Lumpectomy (actually a partial mastectomy)

    2. Nipple reconstruction with tattoo

    2a. Radiation - whole breast including nodes

    3. SNB

    3a 7 nodes

    4. Breast, axilla, upper arm LE - mild.

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited January 2016

    Thanks Everyone- I have everyone added up to here. I have added in Cording, Extra Skin & Cellulitis

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  • labelle
    labelle Member Posts: 721
    edited January 2016

    I was told I have edema of the breast-my treated breast remains sore/tender/swollen 1 year after treatment. None in my arm or other places. Is this considered truncal lymphedema or is breast edema something else entirely? No treatment has been offered to me, nor have I been referred to a lymphedema specialist.


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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited January 2016

    1. Mastectomy

    1a. double

    2a No recon

    2. Yes

    3. Yes

    3a. 3.5 cm mass. Don't know actual number.

    4. Yes mil

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited January 2016

    labelle- about 1 month after my Bilateral- when I told my PS that something was not right- he did send my to a certified lymphedma therapist.

    She told me I had temporary Edema that would go away in 6-9 months. It never did.

    I was not told to do anything. I took my own precautions to avoid arm Lymphedema (as my Breast surgeon said I could not get it with an SNB- Which I knew was not true)

    Anyway...I do feel I had Lymphedema right after surgery- which was misdiagnosed...It was diagnosed 4 years later- My pain & swelling never went away.

    I would insist on seeing a certified Lymphedema therapist incase it is more then Edema

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited January 2016

    thanks Zillsnot4me

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  • mamglam
    mamglam Member Posts: 178
    edited January 2016

    1. Did you have a Mastectomy or Lumpectomy-- Lumpectomy (partial MX)

    1a. double or single mastectomy--

    2a Did you have reconstruction? What kind?--No

    2. Did you have radiation?--Yes

    3. Did you have a SNB or Axillary Dissection?-- SNB

    3a. How many nodes removed--- 3

    4. Do you have Arm Lymphedema also?--Truncal and Breast

    I have also had several bouts of Cellulitis - more than 6!! A Seroma 2 yrs. post surgery that needed to be drained that started all this.

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  • Katiejane
    Katiejane Member Posts: 789
    edited January 2016

    Yes , double mastectomy, DIEP reconstruction, yes, yes, a total of 28 nodes removed-24 on Ca side, 4 on prophylactic side, and yes!

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  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited January 2016

    I'm adding cording along with breast/trunk/upper arm LE and the extra skin. Cording didn't seem to develop until 4 months after LE diagnosis and PT.

    Would it help if I refer to all of my answers from above or just add like this.

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited February 2016

    Thanks, I have updated stats.

    SusanSnowFl I added your additions

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  • coffeelatte
    coffeelatte Member Posts: 209
    edited February 2016

    1. Did you have a Mastectomy or Lumpectomy = Mastectomy

    1a. double or single mastectomy = Double Mastectomy

    2a Did you have reconstruction? What kind? = No reconstruction

    2. Did you have radiation? = No radiation

    3. Did you have a SNB or Axillary Dissection? = SNB

    3a. How many nodes removed = One (1) node

    4. Do you have Arm Lymphedema also? = Yes, I also have arm lymphedema along with truncal

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  • daisylover
    daisylover Member Posts: 310
    edited February 2016

    1. BMX

    2. no reconstruction

    3. ALND on Right side, 12 nodes

    4. just truncal, with arm and shoulder discomfort sometimes

    I had a seroma on the same side drained 3 times

    I was also left with excess skin (in case I wanted recon later - just wrong:)

    Asked for PT prescription and received it. Had to find my own Lymphedema specialist.

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  • aunt_paula
    aunt_paula Member Posts: 271
    edited February 2016

    1. Did you have a Mastectomy or Lumpectomy--Mastectomy

    1a. double or single mastectomy--Double

    2a Did you have reconstruction? What kind?--No reconstruction

    2. Did you have radiation?--No radiation

    3. Did you have a SNB or Axillary Dissection?--SNB on right side only (developed LE on left side first)

    3a. How many nodes removed--3

    4. Do you have Arm Lymphedema also?--Yes--both

    I also have excess skin from surgery. Like Glennie, I'm hesitant about having another surgery, but if it would help I'd consider it (I would like to lose some more weight first). I had seromas on both sides drained twice after surgery.

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

    Hi Aunt Paula! *waving**

    Yes, I'd love to know if anyone with truncal LE had dog ears removed and the LE got better. Any ideas, gang??

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