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National Lymphedema Network urges the American College of Surgeons to …

March 3rd, 2013 by Sharon O'Hara

Greetings… Following is a copy of an email plea from the National Lymphedema Network to the Journal Of American College of Surgeons.

I’ve produced it here almost verbatim because I have leg lymphedema and it is one of the most painful difficult to live with diseases I have.  Last year it flared again and oozed, taking  about 10 months to heal, including a month in Harrison, a month at Martha and Mary Rehab Center, and months of my husband daily cleaning and re-wrapping my lower legs and feet.

Breast cancer survivors need to be educated to the risks of getting lymphedema.  I can promise – as a patient with lower leg lymphedema – nobody should get this disease if it can be avoided.

Patients, please talk to your doctor about lymphedema.  If she/he will not discuss it, find a doctor who will.

 

“National Lymphedema Network

In response to an article published in the March issue of the Journal Of American College of Surgeons (http://www.journalacs.org/article/S1072-7515(12)01312-9/abstract) the NLN Medical Advisory Committee is responding to a Press Release released on February 25, 2013 (http://www.facs.org/news/jacs/lymphedema0313.html)  in the Journal of American College of Surgeons, “Breast Cancer Patients Fear for Developing Lymphedema Far Exceeds the Risk

Respectfully:

Saskia R.J. Thiadens RN

Executive Director

 

“March 1, 2013

On 2/25/2013 the Journal of American College of Surgeons released a statement entitled, “Breast Cancer Patients’ Fear of Developing Lymphedema Far Exceeds the Risk.” The press release was in response to findings from a single-site study published in the March issue of the Journal of the American College of Surgeons noting that some breast cancer survivors take extraordinary measures to try to prevent lymphedema that may not be necessary. The rate of development of lymphedema in the limbs of the study patients (N=120, followed to 12 months) was similar to reported incidence in the medical literature. Three percent of patients having a sentinel lymph node biopsy developed lymphedema and 19% of patients having an axillary lymph node dissection developed lymphedema. The study indicated that patients with sentinel lymph node biopsy worried and took precautions as much as those who had axillary node dissections.

The National Lymphedema Network agrees with the statement in the press release that “future research should be aimed at better predicting which women will develop lymphedema, thus allowing for targeted prevention and intervention strategies and individualized plans for risk-reducing behaviors for each woman during and after her breast cancer treatment.” However, since this type of risk stratification and broad education does not currently exist, it is important for patients to be given accurate information by their doctors and oncology care providers on reasonable approaches to reducing the risk of developing lymphedema.

The American Cancer Society estimates that in 2013 there will be about 232, 340 new cases of breast cancer in the US and there are approximately 2.9 million breast cancer survivors in the US. If 20% of those who have axillary dissections, and, conservatively, 3% with sentinel lymph node biopsies, are at risk of developing lymphedema, this is still a very large number of women who have reason to be concerned about their risk of developing lymphedema.

Lymphedema is a progressive, debilitating condition that is not merely swelling, but an immune system dysfunction. When recognized late in its course, or inadequately treated, lymphedema leads to chronic infection and progressive disability. Women who are at risk for lymphedema have reason to be concerned and these concerns should not be minimized.

The National Lymphedema Network advocates a reasonable approach to risk reduction guidelines, given that a large population of women is still at significant risk of developing lymphedema. In the NLN Position Paper on Risk Reduction, revised in 2012 and available at www.lymphnet.org , a risk stratification approach is detailed so patients can take appropriate precautions according to their medical situation. Every breast cancer survivor deserves accurate information about her or his risk of developing lymphedema and reasonable precautions based on the available scientific evidence.

The American College of Surgeons, and all providers of care to breast cancer patients, are encouraged to provide every breast cancer patient with accurate information about lymphedema, so patients can make informed choices. Given the imperfect state of the science on risk reduction for lymphedema, there are many reasonable, healthy suggestions for patients at risk of lymphedema to reduce their risk, such as weight management and exercise. The Position Papers on the NLN website on Exercise, Risk Reduction and Screening for Breast Cancer Related Lymphedema were written by a panel of medical experts in the field of lymphology and lymphedema treatment.

The National Lymphedema Network urges the American College of Surgeons to endorse the NLN Position papers, provide them to their members, and acknowledge that a large number of breast cancer survivors are at risk of or currently have lymphedema. These patients need education and information that will allow them to take precautions that are reasonable and not excessive.  Education is the key and then what each one does with that information is a personal choice and a part of personalized health care.”

…NLN Medical Advisory Committee  *  Hotline: 1.800.541.3259

National Lymphedema Network | 116 New Montgomery St. | Suite 235 | San Francisco | CA | 94105

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Best wishes and thanks for reading …   Sharon O’Hara <familien1@comcast.net>

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3 Responses to “National Lymphedema Network urges the American College of Surgeons to …”

  1. Sally Santana Says:

    Sharon, how does somebody develop L? For me, it began about 5 years ago when the back of both my legs opened up and it has never fully closed. Both legs are now being wrapped by Harrison Home Health 3 times a week and I’m overseen every couple weeks by Dr. Q and wound care at Harrison. How did this happen? I didn’t know it was a disease before i read your post, or that it was related to the immune system. I’m always in fear of infection. Just finished two weeks on two different antibiotics, one a 500 2xday, the other 875, 2xday. Having trouble getting rid of the yeast infection that comes with it, even tho I’ve taken the Difulcan 150 twice. I am SO TIRED of this.

  2. Sharon OHara Says:

    Sally, we are all different and if you don’t have RLS to complicate the lymphedema – it should be straight forward. Ask DrQ what, if anything, you can do to help clear it up.

    I don’t know why you haven’t healed in five years, but your doctor should have answers. Are they debraiding (sp) you too?

    Another option -, the UWMC is one of the best teaching hospitals around to get answers to medical problems.
    Contact the library and get their books on lymphedema or I have some to give you. Lymphedema can be deadly – Ask your doctor soonest.

    You can also contact the Lymphedema Network for more answers, Sally. It CAN get better!
    Thanks for writing … We are educating each other… Let me know how it goes
    Take care, Sharon.

  3. Sharon OHara Says:

    Sally … I was told to elevate my legs above my heart to let the fluid run back into the body every chance i got and cut down on salt.
    Ask if your doctor recommends the same thing and then do it.
    Best, Sharon

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This is a patient to patient blog to exchange information and resources...from COPD (Chronic Obstructive Pulmonary Disease) to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between. Written by Sharon O'Hara.

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