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Topic: L-Dex Scores/Physical Therapy

Forum: Lymphedema —

Lymphedema is swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy. Lymphedema can appear in some people during the months or even years after treatment ends.

Lymphedema usually develops slowly, and you may feel an unusual sensation — such as tingling or numbness — that comes and goes before any visible swelling occurs. Other symptoms include achiness, feelings of fullness or heaviness, puffiness or swelling, and decreased flexibility in the hand, arm, chest, breast, or underarm areas. Tell your doctor if you experience any of these symptoms. Early treatment of lymphedema is important.

Learn more about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Jan 25, 2021 09:57PM

kathabus wrote:

Hi--

The following are my L-Dex Scores:

  • -7.3 (Baseline before surgery/radiation in March '20)
  • 1.6 (July '20 after surgery/radiation)
  • 0.8 (Aug '20 Improvement after wearing a compression sleeve)
  • -0.3 (Oct '20 Improvement after 2 months of physical therapy/massage and added compression bra)
  • -0.6 (Jan '21)
I'm wondering if anyone had this slow SLOW improvement of scores like this. My nurse navigator who is the lead on this lymphedema issue wants me to go back and get more therapy/massage. And I guess I will. I would love to hear from someone who had this issue. What was your result? Does the PT really help? Or will I just kind of hover around these numbers? I was told that I will probably have to wear the sleeve....um....probably forever. And it's ok. I get it. They're trying to catch this early so that it doesn't get worse. I feel like I've done so much work for little improvement. Wondering if this is normal or what. Do I have to just keep being persistent? Or is this my new normal? Thanks ladies.


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)
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Jan 25, 2021 10:03PM MinusTwo wrote:

I'll be interested to read the answers. I never had an L-Dex score - although I definitely do have truncal & breast LE with some involvement.

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
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Jan 26, 2021 05:20PM ThreeTree wrote:

I too would be curious about what people have to say. I've never heard of an L-Dex score. I had some OT that included massage, etc., but I didn't know how much it might really be helping, or if it wasn't just an "in the moment" sort of thing and that as soon as I was back home and doing routine things, it would just be the same old problem again. I had a few sessions that were prescribed and then no more. The sleeve does help but of course I don't like the idea of having to wear it the rest of my life. I wouldn't want to have to go to regular massage appointments though either for the rest of my life. Uggh! There's just no real solid answer for this problem.

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Jan 27, 2021 04:23PM kathabus wrote:

This is a newer way of getting ahead of lymphedema. I'm not sure anyone will respond. But I am grateful for working on my issues early, and I guess I will be the forerunner on this one and I will be here to help the ladies who follow!

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)
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Jan 28, 2021 12:43AM MinusTwo wrote:

kathabus - please do keep updating. I've added this to my favorites.

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

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