More than Pamphlets/CancerNetwork
This showed up on CancerNetwork. It references a new study to prevent LE in women with ALND.
I'll copy and paste, as it might require a subscrition
http://www.cancernetwork.com/breast-cancer/content/article/10165/1787784
NEWS BRIEF
More Than Pamphlets Needed to Avert Lymphedema "Aftershock"
By Lois Wingerson | February 2, 2011
As you convey the official diagnosis of breast cancer, very likely your patient has already been on the Internet reading about it. Very likely also, even before the treatment that puts her at risk, she is already dreading lymphedema (LE) of the arms and its consequences: discomfort, disability, and disfigurement.
It's difficult to assess individual risk of lymphedema, because methods of measurement vary, as do risk factors. A prospective study of breast cancer survivors in Australia found that up to 42% showed declines in upper body function between six and 18 months post-surgery. Another study from the University of Missouri school of nursing found that incidence of post-treatment LE ranged from 43% to fully 94%, depending on the criterion for diagnosis. What's more, cases continued to emerge among the study population throughout the five years after treatment.
Which patients deserve your special focus on reducing the risk of LE? The Australian study found that age over 50, lower income status, mastectomy, and extensive lymph node surgery are important risk factors for LE, as is being treated on the dominant (muscular) side of the body. Also, pre-treatment body mass index >30 appears to be a risk factor (but not post-treatment weight gain).
The critical moment
The time of diagnosis is the moment to inform a patient that, in order to avoid LE, she should begin appropriate exercises after treatment, under the guidance of a therapistknowledgeable about LE. And she'll need regular reminders after treatment.
It's probably unwise to counsel her to avoid any lifting altogether, according to a recent study in JAMA, which found that with appropriate guidance, upper body exercise does not increase the risk of LE after breast cancer treatment. In fact, to avoid lifting weights may actually increase the risk by weakening upper body muscles.
Along with manual lymphatic drainage, exercise has always been part of complex decongestive therapy, which is the gold standard of treatment for LE. But the evidence is ever stronger that exercise and early physiotherapy can reduce the risk of post-treatment LE developing in the first place. The problem appears to be overcoming the many factors that deter patients from following through on that knowledge.
A study of lymphedema risk-reducing behaviors, published last month in Oncology Nursing Forum, found that even women well-educated about the benefits of exercise were only moderately likely to follow through. The crucial factor predisposing to adherence was "exposing women to lymphedema risk information at the time of ... diagnosis" as well as a "reminder booster" 3 months after surgery.
Lack of time, energy, and support
Sadly, education alone is not likely to be enough to motivate women to undertake the self-care routines necessary to reduce their risk. Jane Armer and coauthors from the University of Missouri School of Nursing have analyzed why women don't follow the recommended self-care programs. The main reasons would not surprise any physician; they come down to emotions, lack of time and energy, and forgetfulness. Hence, at least, the need for regular reminders, and for motivational support.
A more basic problem is the matter of money. Third-party payment for any interventions aimed at reducing LE after breast cancer treatment (let alone avoiding it) is "very limited," says Armer. Medicare places time limits and excludes items such as compression bandages and support garments. Armer is part of a task force lobbying for legislation to improve Medicare coverage for LE risk-reduction programs, including mandated education about home self-care. Meanwhile, a standard for training programs for providers is in development, and an international best practices document on LE management is being updated.
A Cancer and Leukemia Group B multicenter trial, now under way, will assess whether tailored exercise and counseling programs improve on education as a way to reduce LE risk in breast cancer. So in time, the support you and your staff need to support your breast cancer patients may gradually emerge, and the nationwide boom in breast cancer survivors may not be followed by an aftershock of lymphedema.
Exactly what exercises should be done? Few studies give all of the details (though all have used skilled therapists). The National Lymphedema Network and the Lymphology Association of North America have online directories of exercise therapists skilled in working with LE. A comprehensive review of LE management in breast cancer, available online in full text for free, offers specific guidance on patient education topics as well as details about exercise and strength training regimens.
CancerNetwork |
Here's the clinical trial referenced, it's by Electra Paskett--great researcher, and has multiple sites: it's for prevention of LE in ALND
http://www.clinicaltrials.gov/ct2/show/NCT00376597
Here's a press release from Georgetown, which might be another of the study sites:
Kira
Comments
-
Wow, Kira. I wish my surgeon had read this and taken it to heart. Dr-you-don't-have-any-risk probably still won't read it, but I'm going to try to send it to him. Thanks for posting!
Dawn
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