University of Pittsburgh starts early screening for LE
Just found this: Magee-Womens Hospital is going to screen patients with the L-dex. I did hear a lecture on the L-dex, which says on its brochure that it is not intended for diagnosis of LE, and Mei Fu has not found it very sensitive in her trials--better they should spend a lot and get a perometer, but it's a start.
I had emailed the chief investigator, as she is using the laser, and while her studies aren't impressive, IMO, she is addressing the issue.
So, hopefully pre and post op screening of women's arms will become a standard.
The lecture I heard on L-dex showed that multiple readings were better than one.
The announcement comes from the manufacturer of L-dex, so it's essentially advertising: they're creating their "centers of excellence" for L-dex, but advertising aside, it's acknowledgement and creation of a formal screening program.
Happy Thanksgiving!
Kira
Comments
-
Here's the official notice from Pitt, and itn's not funded by L-Dex, but by internal funding, and they comment on how expensive LE is:
http://www.upmccancercenters.com/news/upci_news/2010/112310_breast.html
Kira
-
"While lymphedema can't be cured, intervention strategies such as exercise, physical therapy, weight loss and laser treatments can successfully control it's progression."
What laser treatments are they talking about?
Hope all hospitals follow their lead. I'm in Pennsylvania, but across the state from Pittsburg and enrolled in the much talked about Geisinger Health System. However, Geisinger doesn't have anything in the way of Lymphedema guidelines, prevention, support groups etc.
-
Wow, Sher, that's quite a statement by Dr. Atilla Soran. I think I'll go email him and see what evidence he's able to cite. While there are a couple of laser studies currently in progress I haven't seen any published that actually show laser can control progression. That's such a sweeping statement! It would mean laser treatment (which has never been shown to be safe, by the way, and is contraindicated in the presence of an active cancer cell) actually inhibits the whole lymphedema process, including the formation of fibrosis and thickened layers of fat beneath the skin. No way has anyone studied that, nor could they anytime soon, since it's only over time that these changes occur. The science isn't there even to understand what the mechanism of laser treatment is. Maybe the doctor was misquoted (THAT sure has happened before!
). I'll let you know if I find out anything.
Be well!
Binney -
Binney, Atila is a woman, and she published the study on 17 patients, using the laser--she's the one University site listed on the Rian list, so I'd emailed her. Her results were not impressive, and we couldn't believe she got a study of 17 patients published--talk about under-powered.
So, she likes technology developed by Australians, and while the laser stuff is not appreciated: still loving Andrea Cheville's slide at the NLN:
"Even if the laser has tissue effects: SO WHAT??"
Andrea Cheville made a compelling case that no study proves that the laser works, and adopting it would divert resources from modalities, like CDT, that do work.
Here's the Soran study:
http://www.ncbi.nlm.nih.gov/pubmed/20445997
The short-term effects of low-level laser therapy in the management of breast-cancer-related lymphedema.
Dirican A, Andacoglu O, Johnson R, McGuire K, Mager L, Soran A.
Department of Surgery, Division of Surgical Oncology, Magee-Womens Hospital University of Pittsburgh Medical Center, Pittsburgh, PA, USA.
AbstractBACKGROUND: Breast-cancer-related lymphedema (BCRL) is a chronic disease, and currently there is no definitive treatment for it. There are some therapeutic interventions targeted to decrease the limb swelling and the associated problems. Low-level laser therapy (LLLT) has been used in the treatment of post-mastectomy lymphedema since 2007 in the US. The aim of this study is to review our short-term experience with LLLT in the treatment of BCRL.
METHOD: Seventeen BCRL patients referred to our lymphedema program between 2007 and 2009 were enrolled in this study. All patients had experienced at least one conventional treatment modality such as complex physical therapy, manual lymphatic drainage, and/or pneumatic pump therapy. LLLT was added to patients' ongoing therapeutic regimen. All patients completed the full course of LLLT consisting of two cycles. The difference between sums of the circumferences of both affected and unaffected arms (DeltaC), pain score, scar mobility, and range of motion were measured before and after first and second cycles of LLLT sequentially.
RESULTS: All patients were female with a median age of 51.8 (44-64) years. DeltaC decreased 54% (15-85%) and 73% (33-100%), after the first and second cycles of LLLT, respectively. Fourteen out of seventeen experienced decreased pain with motion by an average of 40% (0-85%) and 62.7% (0-100%) after the first and second cycle of LLLT, respectively. Three patients had no improvement in pain after LLLT. Scar mobility increased in 13 (76.4%) and shoulder range of motion improved in 14 (82.3%) patients after LLLT. One patient developed cellulitis during LLLT.
CONCLUSION: Patients with BCRL received additional benefits from LLLT when used in conjunction with standard lymphedema treatment. These benefits include reduction in limb circumference, pain, increase in range of motion and scar mobility. Additionally, two cycles of LLLT were found to be superior to one in this study.
PMID: 20445997 [PubMed - as supplied by publisher]
Unimpressive, 17 patients over two years, who had various treatments, and followed for how long?
Sorry, this is what happens when I'm not closely reading the details: I'm sure she's not misquoted, as she was very excited about her study when she emailed me: I emailed back my concers--no reply!
Kira
-
Hmmm. It would appear that Dr. Soran is not cooking a turkey today, as she answered my email already
. (I'm not cooking either, obviously -- our daughter is. Sure smells great right about now!). She mentions the study Kira quotes above:
Thank you very much for your interest on program. We published a laser study this year;
The short-term effects of low-level laser therapy in the management of breast-cancer-related lymphedema.<https://owa.upmc.edu/pubmed/20445997>
Dirican A, Andacoglu O, Johnson R, McGuire K, Mager L, Soran A.
Support Care Cancer. 2010 May 6. [Epub ahead of print]
However limited the results of this study may be (17 patients, short-term), it at any rate has nothing to do with the control of disease progression as Dr. Soran mistakingly stated, the mechanisms of which (even the definition of which!) is still only beginning to be understood. Scientists studying the cellular effects of LE are finding that it is unique among the kinds of edema people can experience in that over time it deposits a thickened layer of fat beneath the skin (among other things). At present no one knows why, much less how to intervene in that process.Kira, there was a video series by Dr. Stanley Rockson about this lately, yes? I can't find it at this point (no surprise there!) He discusses some of the mysteries of LE progression. Interesting. I think what Dr. Soran meant to say is that in her experience the double laser treatments reduce swelling, pain, and immobility for her patients, rather than disease progression.
I'm still waiting for someone to do a long-term study of laser treatment that verifies its safety, in particular regarding the development of Radiation Induced Brachial Plexopathy. But long-term anything with laser is still a way off. (She reports one patient developing cellulitis during treatment, but it sure wouldn't be fair to blame that on the treatment without a lot more science being available as to the mechanism by which cellulitis happens in LE. We lymphers are just susceptible to cellulitis, laser or no. My concern is with other possible long-term issues.)
Sher, it sounds like she's following the original Australian protocol for her laser treatments, which involves two cycles of treatment with the laser in specific areas. Not every therapist who uses a laser adheres to that protocol, as the whole thing is still so experimental. (Then again, as we've all discovered, not every therapist performs CDT according to accepted standards either. Not a whole lot of supervision going on!
)
Mmmmm! Turkey's ready! Happy Thanksgiving!
Binney -
Binney4 wrote:Kira, there was a video series by Dr. Stanley Rockson about this lately, yes? I can't find it at this point (no surprise there!) He discusses some of the mysteries of LE progression.
Binney: Not sure if this is the video series you are referring to but here is a link to Dr Rockson"s presentation "Lymphedema - New and Emerging Treatments" that can be downloaded from the Stanford Video Library. You can download the full hour presentation using either the link for iTunes or Quicktime / Windows Media Player.
http://healthlibrary.stanford.edu/videolibrary/index.html#rockson09
You can also watch the video on YouTube in a series of (6) 10 minute segments if you prefer not downloading.
YouTube Links to all 6 segments:
http://www.youtube.com/results?search_query=DR+STANLEY+ROCKSON+LYMPHEDEMA&aq=f
YouTube Link to Segment 1:
http://www.youtube.com/watch?v=XR-9duCfgF0
(Hope everyone had a great Thanksgiving! We had Thanksgiving dinner at my house on Friday due to bad travel weather for family coming from a distance. I did all the cooking and have had a houseful of relatives for 2 days. Cooked 25 lbs of turkey with all the fixings and I barely have any leftovers. Had a great time, they all left for home Sat evening, I immediately went to bed from exhaustion, just woke up and am trying to catch up on posts.
)
-
Binney: Just found this video presentation from Dr. Rockford which may be the one you are talking about. A more indepth discussion oriented toward physicians which includes information on cellular and skin changes with lymphedema.
http://www.providencecme.org/Video.aspx?Vid=126
What is the role of biocompression in the therapeutics of lymphedema?
STANLEY ROCKSON, M.D. DIR., CENTER FOR LYMPHATIC AND VENOUS DISORDERS STANFORD UNIVERSITY SCHOOL OF MEDICINEMODERATOR: Alexander Tovar, M.D., Chairman, Department Of Surgery, PSJMC
FACULTY DISCLOSURE: According to CMA guidelines for faculty disclosure of commercial support, we are required to announce the following: Dr. Rockson states he has no disclosures.
OBJECTIVES At the end of the presentation, attendees will be able to:
articulate the etiology, epidemiology and pathophysiology of lymphedema and identify who is most at risk.recognize the signs and symptoms of lymphedema and perform an appropriate diagnostic work-up.incorporate the current Best Practice Standards of Care for lymphedema, including CDT, pneumatic compression pumps, garments and early intervention.discuss advances in medical management and surgery.identify cultural/linguistic factors that impact the epidemiology, incidence, diagnosis, treatment, clinical course, and/or long-term outcomes of lymphedema. -
Thank you Linda! I was watching the youTube ones, and the links are great!
Sounds like you had a great holiday.
I only watched the first lecture, so I'll do the hour--have you watched them?
Kira
-
I had an L-Dex test in Boston in late September. They had a machine set up in the World Trade Center which was the exhibition center for Boston's Race for the Cure. I could be wrong, but it is my understanding that the test is used to identify those most at risk for lymphedema. It is a simple test, took a couple of minutes and was totally non-invasive. It sounded like a good idea to me, if it really works. In my case, the results came back as minimal risk, which is what I expected after just a lumpectomy and 4 sentinel nodes removed. It gave me some relief that I'm not likely to have a problem down the road with lymphedema. Before surgery, my hospital provides lymphedema training, which I attended. Honestly, it scared the crap out of me and I was afraid I'd have a "forever" reminder of my breast cancer. As a result of this test, I'm not worried about it. I guess it could be a false sense of security, but it confirmed what my surgeon told me.
Michelle
-
Michelle, the L-Dex measures fluid in the tissues, and the company says it should not be used to diagnose lymphedema. I heard a lecture on it at the NLN conference, and it's most sensitive use is with mulitple readings.
http://www.impedimed.com/products/l-dex-u400/
L-Dex® U400
ImpediMed's L-Dex® technology utilizes the characteristics of frequency dependent current flow to quantify changes in extracellular fluid in the patient's limb. These changes can assist the surgeon or oncologist in clinically assessing early signs of lymphedema. The L-Dex technology is specific for extracellular fluid and is unaffected by changes in the patient's weight due to a change in fat mass or muscle mass. As fluid accumulates, the L-Dex value increases on the scale. The L-Dex number provides an instant tool for assisting in the clinical assessment of lymphedema progression as well as an easy way to track change in the patient over time.L-Dex values for a normal patient without lymphedema will fall in the range of -10 to +10. The presence or absence of lymphedema is assessed by comparing the patient's L-Dex test to this range and to their past L-Dex tests.
Note: This device is not intended to diagnose or predict lymphedema of an extremity.
Note: L-Dex® values that lie outside the normal range may indicate the early signs of lymphedema and values that have changed +10 L-Dex units from baseline may also indicate early lymphedema. The L-Dex scale is a tool to assist in the clinical assessment of lymphedema by a medical provider. The L-Dex scale is not intended to diagnose or predict lymphedema of an extremity.
So, it has limitations, and multiple readings are the best use of it--Mei Fu PhD used it in her research and found it insensitive, so she got a perometer (very, very expensive.)
I only had three nodes removed, and a lumpectomy--so statistically my risk was low, but I got lymphedema three weeks out of surgery, and it never resolved.
It's great that your number was low, but it's even better that you received information before surgery.
Hope you never join the "swell club"
Kira
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team