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>
