mine didn’t develop until a few weeks after surgery. And it began heavy and tingly. It cannot be cured and it does need therapy sometimes it has a flare up. I have a specialist on call when I need it. Wrapping it was very effective as someone already mentioned. That is what helped bring mine under control. I do need a compression sleeve daily. It can be uncomfortable if not addressed, and maintained!! Severity depends on individual. I had 35 nodes removed. I have a very mild case. So even one or two nodes removed can even cause it. The problem is the surgeons don’t do enough imo to inform the patient that they Are VERY likely to get this. Then you wake up freaked out not knowing what it is. So maddening. I wish you nothing but well, hope it calms down. ~M~

Viewfinder - I have Left Breast LE, that resulted from Radiation, a week into treatments. I was fine after my LX surgery (3 nodes removed). Like it's been said before, LE can occur at any time after the lymphatic system has sustained any type of injury. My LE was VERY painful in the beginning. I had Stage 2 LE (bordering on Stage 3). I was referred to a LE Specialist and saw her weekly for about 4 months. Now I see her monthly. Most days I do not feel pain or symptoms from my LE any longer, as long as I continue my daily treatments and compression. I was recently diagnosed with Left Nipple LE in July. So it's possible to have recurrent issues or new things pop up down the road, even when previous symptoms and LE are managed. It's truly a rare "animal" all on its own.

There are stages of LE, no cure but treatment in earlier stages is very manageable.

"Lymphedema is defined as stages:

Stage 0: Latent lymphedema: an at risk-area that may have excess tissue but no lingering swelling
Stage 1: swelling that pits—indents when pushed, but can be reduced with treatment
Stage 2: swelling that persists, even with treatment, causing the skin to harden
Stage 3: advanced swelling with extensive tissue changes, some changes irreversible"

I believe the above website, Step Up & Speak Out, was created by BCO members with Lymphedema. I've found it very helpful and informative. Perhaps it will help you and your sister navigate this part of her journey too. There is an excellent page (found here) on how to go about finding a trained and certified LE specialist, complete with questions to ask and qualifications and training to look for in order to help provide the best outcome with therapy.

Wishing you both the best. Hugs to you and your sister.

Hi ViewFinder, glad you feel that website will be helpful. It's been invaluable to me.

The reason I needed to see my LE therapist weekly for many months, was due to the severity of my LE. Like I mentioned I had Stage 2 (bordering on Stage 3) so I had pitting of my skin and the beginning signs of hardening of the skin, Fibrosis of underlying tissue (muscle, lymph vessels, etc) and Cording, which led to developing Rib Dysfunction (muscular form) and Chostocondritis.

I had to see her weekly to have her "work" manually (which was PAINFUL but in the end VERY helpful) on these various issues in order work towards better symptom management and pain resolution. This involved alot of hands on massage, where she was directly breaking up scar tissue and hardened tissues so that my lymph system had a better chance to work on its own over time. That's why now I can see her monthly, since we have made a ton of progress and I'm able to manage my LE mostly on my own now, with checkups here and there by my Therapist. Maybe that makes more sense now?

During the first weekly visits she taught me many "self care" therapies to do at home, this included DAILY 30-45 mins of Manual Lymphatic Massage Drainage Therapy (LMD) and also about 30 mins of range of motion exercises. Also I needed to wear compression items for at least 8-12 hours a day in the beginning. The LMD is basically me doing the work of my Breast Lymph System since it was impaired. This involves lots of circling of tissue, stroking skin in a specific direction multiple times to move fluid away from the breast, and helping the other lymph system take on and process the extra lymph fluid coming their way.

There are MANY good youtube videos at the MD Anderson Cancer Center channel that VISUALLY demonstrate what LMD looks like for those with LE. Hope this link will help give you a better understanding of techniques that may be helpful for your sister.

Initially my daily regimen was much more time-consuming, but with consistent therapy (at my LE PT and at home) over a period of the past 8 months, I now have been able to decrease the time and frequency spent doing my own LMD, wearing compression prosthesis (Swell Spot, Komprex, Scar Tissue Gel Patches, etc) to only about 15 mins a day and a few hours here and there. It's very manageable now, but in the beginning it seemed overwhelming and never-ending.

Here is a list from BCO of many of the most common types of "treatment" for LE:

https://www.breastcancer.org/treatment/lymphedema/treatments

Like I said, it's normal to feel overwhelmed in the beginning or experience a great deal of pain/symptoms due to the LE. Everyone is different of course, but I'm hopeful that with treatment and management by a trained LE therapist your sister will have progress to show after a few months or perhaps even sooner. Hoping for the best!

if your sister didn’t suspect lymphedema and was surprised when the OT mentioned it, she probably doesn’t have a big problem. I recommend that she find a qualified lymphedema therapist who can assess her and teach her how to do self massage to prevent growing issues. I believe that is as, if not more, important than sleeves and gloves.

I second what runrcrb said - make sure your sister gets to a CLT (certified lymphedema therapist) right away. Not all OTs are CLTs.

Sometimes lymphedema is reversible with early intervention, but even if it's not reversible, early intervention helps keep the symptoms from becoming as severe.

I know someone who has a similar situation to your sister, and she does wear compression on each arm.

Hey, do you all know about the great beneficial effects of Selenium ( sodium selenite specifically) on Lymphedema?

There are a number of studies that have showed positive results. I think I will start a thread on this topic. Here's just a few abstracts:

Treatment of secondary lymphedema of the arm with physical decongestive therapy and sodium selenite: a review.

Kasseroller RG1, Schrauzer GN.

Author information

1

Medical Department, Wittlinger's Therapy Center, Walchsee-Alpenbad GmbH, Walchsee, Austria.

Abstract

Secondary lymphedema (LE) in the proximal extremities develop with relatively high frequency in cancer patients after tumor resection, lymph-node obliteration, and/or postoperative irradiation. Physical therapy combined with manual or mechanical lymph drainage and compression bandaging provides symptomatic relief but does prevent the progression of degenerative changes in the affected tissues. As biochemical studies have linked these changes significantly to the excessive generation of oxygen radicals in the affected tissues, LE therapy should aim to eliminate oxygen radical production. Because selenium is a functional component of antioxidant enzymes, has anti-inflammatory properties, and reduces the expression of endothelial cell adhesion molecules, its effect was investigated in postmastectomy patients with LE of the arm. Sodium selenite administered orally in isotonic solution (selenase) at oral dosages of 800 microg Se/day on days 1 through 4 and 500 microg Se/day on days 5 through 28 produced a spontaneous reduction in LE volume and normalized blood parameters in a manner consistent with diminished oxygen radical production. In a randomized, placebo-controlled, double-blind study with postmastectomy LE patients undergoing combined physical decongestion therapy (CPDT), selenite at similar dosages increased the efficacy of CPDT and improved the mobility and heat tolerance of the affected extremity. The patients in this study received 1000 microg of Se/day orally during the first week, 300 microg Se/day during the second and third weeks, and a maintenance dose of 100 microg Se/day during 3 months of follow-up. All patients remained erysipelas-free during the 3 weeks of CPDT and the 3-month follow-up period. Based on the available evidence, supplementation with sodium selenite in isotonic solution is judged to be a valuable and safe extension of the physical decongestive therapy of LE.

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Sodium selenite and cancer related lymphedema: Biological and pharmacological effects.

Pfister C1, Dawzcynski H2, Schingale FJ3.

Author information

1

biosyn Arzneimittel GmbH, Schorndorfer Straße 32, 70734 Fellbach, Germany. Electronic address: chpfister@t-online.de.

2

biosyn Arzneimittel GmbH, Schorndorfer Straße 32, 70734 Fellbach, Germany.

3

Lympho Opt Fachklinik, Happurger Str. 15, 91224 Hohenstadt, Germany.

Abstract

A significant percentage of cancer patients develop secondary lymphedema after surgery or radiotherapy. The preferred treatment of secondary lymphedema is complex physical therapy. Pharmacotherapy, for example with diuretics, has received little attention, because they were not effective and only offered short-term solutions. Sodium selenite showed promise as a cost-effective, nontoxic anti-inflammatory agent. Treatment with sodium selenite lowers reactive oxygen species (ROS) production, causes a spontaneous reduction in lymphedema volume, increases the efficacy of physical therapy for lymphedema, and reduces the incidence of erysipelas infections in patients with chronic lymphedema. Besides biological effects in reducing excessive production of ROS, sodium selenite also displays various pharmacological effects. So far the exact mechanisms of these pharmacological effects are mostly unknown, but probably include inhibition of adhesion protein expression.

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Nutrients 2019, 11(5), 1021; https://doi.org/10.3390/nu11051021

Article

Sodium Selenite Alleviates Breast Cancer-Related Lymphedema Independent of Antioxidant Defense System

by Hye Won Han 1,Eun Joo Yang 2,* andSeung-Min Lee 1,*

1

Department of Food and Nutrition, Brain Korea 21 PLUS Project, College of Human Ecology, Yonsei University, Seoul 03722, Korea

2

Department of Rehabilitation Medicine, Seoul National University Bundang Hospital, Seoul National University College of Medicine, Seongnam 13620, Korea

*

Authors to whom correspondence should be addressed.

Received: 3 April 2019 / Accepted: 3 May 2019 / Published: 7 May 2019

Abstract

:

Long-term surveillance is necessary to identify patients at risk of developing secondary lymphedema after breast cancer surgery. We assessed how sodium selenite supplementation would affect breast cancer-related lymphedema (BCRL) symptoms and parameters in association with antioxidant effects. A randomized, double-blind, controlled trial was conducted on 26 participants with clinical stage II to III BCRL. The control group (CTRL, n = 12) and selenium group (SE, n = 14) underwent five sessions of 0.9% saline and 500 μg sodium selenite (Selenase®) IV injections, respectively, within 2 weeks. All patients were educated on recommended behavior and self-administered manual lymphatic drainage. Clinical diagnosis on lymphedema by physicians, bioimpedance data, blood levels of oxidative markers, including glutathione (GSH), glutathione disulfide (GSSG), malondialdehyde (MDA), glutathione peroxidase activity (GSH-Px), and serum oxygen radical absorbance capacity (ORAC) levels, were investigated at timelines defined as baseline, 2-week, and follow-up. Sodium selenite increased whole blood selenium concentration in the SE group. Compared to the baseline, at 2 weeks, 75.0% of participants in clinical stage showed improvement, while there was no change in the CTRL group. At follow-up, 83.3% and 10.0% of the SE and CTRL, respectively, showed stage changes from III to II (p = 0.002). Extracellular water (ECW) ratios were significantly reduced at 2 weeks and follow-up, only in the SE group. Blood GSH, GSSG, GSH/GSSG ratio, MDA, and ORAC levels did not change by selenium supplementation. Sodium selenite improved diagnostic stages of BCRL along with ECW ratios, although the beneficial effect might not be related to its antioxidant activity. Selenite's effect on lymphedema may be associated with non-antioxidant properties, such as anti-inflammation and immune function. Further mechanistic research using a larger population is needed.

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Journal of the Korean Academy of Rehabilitation Medicine 2011;35(2):207-213.

The Effect of Sodium Selenite on Breast Cancer-Related Lymphedema. Kim, Byung Hun , Hwang, Ki Hun , Jeong, Ho Joong , Kim, Ghi Chan , Sim, Young Joo Department of Physical Medicine and Rehabilitation, Kosin University College of Medicine, Busan 602-702, Korea. oggum@hanmail.net Abstract Objective To investigate the effects of complex decongestive physiotherapy (CDPT) with sodium selenite compared to the effects of CDPT without sodium selenite for the treatment of breast cancer-related lymphedema (BCRL). Method Patients (n=40) who were diagnosed with BCRL were randomly assigned to the two groups: sodium selenite group or the non-sodium selenite group. In the sodium selenite group, sodium selenite was administered for 100 days concurrently with CDPT. In the non-sodium selenite group, only CDPT was administered. The main outcome measurements included limb circumference (proximal, distal and total) to indicate volume changes, the visual analogue scale (VAS) and the short form-36 version 2 questionnaire (SF-36) scores to evaluate the quality of life (QoL) pre- treatment, 100 days post-treatment and 130 days post-treatment for each patient. Results The sodium selenite group experienced volume reduction of 8.22% and 9.21%, at 100 and 130 days post- treatment, respectively. The non-sodium selenite group experienced 5.57% and 6.11% reduction in swelling at the same periods. Between the two groups, more significant volume reduction was observed in the affected distal limbs of patients assigned to the sodium selenite group compared to patients in the non-sodium group. However, the VAS and the SF-36 scores were not significantly different between the two groups. Conclusion Sodium selenite therapy in combination with CDPT is effective in reducing the volume of upper limb in BCRL, and significantly reduce the volume of the affected distal upper limb compared to CDPT alone.