Join Us

We are 218,114 members in 84 forums discussing 160,905 topics.

Help with Abbreviations

Topic: Jump in L-Dex Score--wearing the sleeve

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Aug 10, 2020 12:15PM

kathabus wrote:

Hi Ladies....Back in March before surgery/radiation, I had a L-Dex score of -7.3 and last month it was 1.6. Because of the jump I am now wearing a compression sleeve and gauntlet everyday. I get another L-Dex test in a few weeks to see if it helps bring the score down.

Any similar experiences out there? It's obviously not even considered lymphedema at this point, just subclinical....but I know it can sneak up.

I was wondering if this sleeve usually works in a situation like this. I've been feeling intermittent tingling in this arm as the weeks go on. Is that normal? Thank you!

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
Log in to post a reply

Page 1 of 1 (9 results)

Posts 1 - 9 (9 total)

Log in to post a reply

Aug 10, 2020 04:18PM MinusTwo wrote:

kathabus - I have mild truncal & breast LE. I'm determined to keep it from progressing to my arm(s). I wear a compression bra 24/7. I wear a sleeve & gauntlet for repetitive activity and when I fly. The link below has some great information.

https://www.stepup-speakout.org/


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Aug 11, 2020 11:28AM kathabus wrote:

Thank you. This is a great site!

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
Log in to post a reply

Aug 17, 2020 11:24AM kathabus wrote:

I've been wearing the sleeve and gauntlet for 3 weeks now. 12 hours per day. It seems as the weeks go on....there is a tingling sensation that is increasing in my arm. It's happening more and more each day. Does anyone know if this is from wearing the compression sleeve....or could this mean that lymphedema may be worsening....Thank you!

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
Log in to post a reply

Aug 17, 2020 11:56AM - edited Aug 17, 2020 11:58AM by buttonsmachine

kathabus, it's hard to say whether the tingling and your increased LDEX score are related, or if it's the sleeve, or if it's something else. I hope they are continuing to monitor your LDEX score just in case.

Does your sleeve fit properly and comfortably?

Since you are soon out from your SLNB it's possible that is why you are feeling tingling. Lymph node biopsies are very irritating because they are done in such a sensitive area.

When my LDEX score increased, my lymphedema doctor wanted me in compression most of my waking hours. I was told that when lymphedema is still in the very early fluid stage, it can still be reversible. With compression my LDEX scores stayed in the normal range. I still wear compression regularly, because I feel that it does help me.

I think the important thing is to very be attentive to it, and look carefully for changes yourself that you can tell your doctors about immediately.

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
Log in to post a reply

Aug 17, 2020 12:05PM kathabus wrote:

Oh, that's good to hear! That's what I'm hoping. My next L-Dex score is next week....so we are on top of it. I was just curious about the tingling since it's all day long. It does fit well and doesn't bother me. I'll post an update after my next score. Hoping for a decrease...or at least steady. :)

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
Log in to post a reply

Oct 12, 2020 02:28PM kathabus wrote:

Hi everyone....

My score went down only a half point after wearing my sleeve for 6 weeks...not enough. So then I was sent to a lymphedema therapist, who determined my main issue was breast lymphedema. I've been getting treated (massaged) twice a week for almost 4 weeks now and then I get another L-Dex score at the end of this month. I also bought a compression bra to match my sleeve and gauntlet Loopy

I'm wondering what this is all going to look like.....I'm expecting a lower score. But then what? I'm curious to hear from women with breast lymphedema....Minus Two....sounds like you just live in that bra! That's what I'll do, too. Not a big deal. But do you do self massage a few times a week? Do you wear the sleeve? I'm wondering if this will be a constant issue, or if after this it will subside. I guess there's no way to predict it. Just looking for other women's stories. Thanks much.

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
Log in to post a reply

Oct 12, 2020 04:01PM MinusTwo wrote:

katha - yes I do live in my Sydney bra. It's light enough weight that it's not hot - even if I'm walking in our 95 degree weather. I even ordered a 'fushia' color and wore it under my bathing suit for water aerobics. When I fly, I wear a heavier duty Belisse compression bra - hooks & zipper in the front and velcro straps. I put it on before & leave it on for an hour after the flight lands. Normally I only wear sleeves & gauntlets when I fly, since my goal is to keep the LE from spreading to my arms. Again - I leave them on for an hour after the flight lands. For awhile I did self massage twice a day, but now I can tell when there's swelling and focus at those times.

I loved when I was going to the LEPT every week and then every other week. It was so nice to have someone else doing the work. I went back every 6 months for a "tune-up" for awhile, but now my therapist has been promoted to manager of 5 or 6 facilities and it hard to catch up with. Not to mention covid. I feel VERY fortunate that I have only MILD breast & Truncal LE.

I don't know the term "L-Dex Score". How is that tested? Or is it just the measurement?

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Oct 12, 2020 04:45PM - edited Oct 12, 2020 04:45PM by kathabus

I appreciate that info. I just purchased the Belisse one....I'll look into the Sydney!

L-Dex Test (Lymphedema Index Test) is not just the measurements....you stand on something that looks like a scale and you hold onto handles that send an electrical signal through your body (painless/harmless). It measures how easily (or not easily) the signal travels through the fluid in each arm, and that translates into a score.

They gave me this test before my lumpectomy and radiation and then again afterward....and the increase in score told us there was an issue. It's pretty cool, because they can detect an issue before you can, which is the point.


43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
Log in to post a reply

Oct 12, 2020 06:00PM MinusTwo wrote:

Kath- here's the link for the Sydney. It's a woman owned/USA company and they're very nice about helping on the phone. And about returns if the size doesn't work. https://www.wearease.com/products/sydney-bra?varia...

If I remember correctly, WearEase has free shipping in October.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

Page 1 of 1 (9 results)