TO OUR DOCTORS
(SURGEONS, ONCOLOGISTS, PRIMARY CARE PHYSICIANS,
GYNECOLOGISTS, AND OTHER PHYSICIANS)
PLEASE
PROVIDE ALL OF YOUR BREAST CANCER PATIENTS WITH INFORMATION
REGARDING LYMPHEDEMA!!
A recently published study showed
that
accurate
patient education is a
critical dimension of lymphedema risk-reduction. Knowledge
of lymphedema and its risk reductions is essential to all
breast cancer patients, and makes a difference in their
long-term quality of life.
In this study
only fifty-seven
percent of the participants reported that they received
lymphedema information.
- "Cancer-Related Lymphedema: Information, Symptoms, and
Risk-Reduction Behaviors," Authors: Fu, Mei R.;
Axelrod, Deborah; Haber, Judith, Source: Journal of Nursing
Scholarship, Volume 40, Number 4, December 2008 , pp. 341-348(8)
If you don’t
ask, you will not know when your breast cancer patients have lymphedema: ask routinely
about arm heaviness, tingling, swelling, tightening or any
other discomfort. A
survey found that half of the patients acknowledging arm swelling in a mail
questionnaire had never reported this problem to any doctor or other health care
provider.
If we
appear stubborn, it is because we have had to be our own
advocates for so long. Women and men trying to reduce their risk of
lymphedema have been called uncooperative, difficult, silly,
hysterical, and un-educated. We have been accused of
over-reacting, and over-stating our risk. Most of us are
battling cancer, and did not invite the additional risk of
lymphedema as a consequence of our treatments. We certainly
do not welcome or enjoy battling with our medical providers
about lymphedema prevention. Although swelling of an arm or
a chest wall might seem trivial in comparison to breast
cancer, lymphedema is a painful, visible, expensive medical
condition that increases our chance of developing a
life-threatening infection. Our own individual risk might
seem low to you (6-30%), but once lymphedema occurs, it
cannot be cured. It can only be managed. We face a
lifetime of limitations on strenuous physical activity,
self-consciousness when wearing our lymphedema garments, expense
associated with items not covered by our insurance or
Medicare,
and other difficulties too numerous to mention.
Please
understand that we will do everything we can to minimize our
risk, even if it means arguing with you.
We would
never ask you to avoid using "universal precautions" such as
protective gloves to protect yourselves and tell you your
risk of getting AID's from us was "low." We understand
your need to protect yourselves from a lifelong distressing,
possibly fatal, disease. Please understand our same
need to protect ourselves from developing lymphedema, a
lifelong painful condition, if we are at risk, and from
worsening our lymphedema, if we already have it.
1.
Please include a lymphedema assessment, along with taking our
weight and vital signs, during follow-up visits with breast
cancer patients. Having measurements of arm circumference in
our medical records will alert your staff to any subtle changes
that might have occurred since the previous visit.
2.
We ask that you refer all your breast cancer patients to a
qualified lymphedema therapist
for early assessment of their
lymphedema risk. Ideally, this would be done prior to surgery,
so that baseline measurements could be taken and kept on file in
case a problem occurs later. An early consultation with
a lymphedema therapist also provides an opportunity for
educating your patients regarding lymphedema risk reduction.
3.
Lymphedema is
often listed as a complication of breast cancer surgery. As the
condition is a direct consequence of surgery, we would want our
surgeons, oncologists and radiation oncologists to understand
the condition and treatment: to assess for it and be able to
assist in management. Patients with lymphedema often feel
abandoned, as no physician will manage their care-please
actively manage and support this known complication of breast
cancer treatment. Studies support the lack of physician
involvement in managing lymphedema: "A striking feature of
these findings is the disparity in what patients expect from
their physicians and how physicians view their roles as a
resource for lymphedema education and counseling. While women
viewed their physicians as a primary source of information and
counseling, physicians saw their role in this regard as
minimal."
4.
Radiation oncologists need to be aware of the risks of lymphedema
from radiation therapy. Many radiation oncologists continue to
tell their patients that radiation of the level 1 axillary nodes
does not cause lymphedema, and it’s clear that it is a risk for
both arm and breast edema— the risk of arm edema is increased by
3-7% and up to 70% of patients who have radiation develop sub
clinical breast lymphedema.. Be specific with us about what part
of the axilla will be in the radiation field. Discuss with us
techniques that might be used to avoid irradiating healthy
tissue unnecessarily (such as prone positioning, IMRT). Please
don't tell us that radiation does not cause breast, arm and
possibly trunk edema. Several articles state that lymphedema
is a known complication of radiation therapy. Radiation does
increase the incidence of lymphedema, although it is unclear to
what degree; please do not deny that reality.
-
"Lymphedema of the Arm and Breast in Irradiated Breast Cancer
Patients: Risks in an Era of Dramatically Changing Axillary
Surgery",
(The Breast
Journal, Vol 10, #5, 2004,pp.405-411)
-
"Breast Radiotherapy and
Lymphedema,"
(Presented
in Part at the American Cancer Society Workshop, New York, New
York, February 20-22, 1998.)
-
"Complications
of Breast-cancer Radiotherapy,"
E. Senkus-Konefka, and J. Jassem
5.
When you refer a patient for lymphedema therapy, please maintain
contact with that patient through follow-up visits. Patients
at risk for and affected by lymphedema will need periodic
medical re-evaluation, and their prescriptions for lymphedema
garments and equipment will need to be renewed annually. Your
patients will appreciate being able to discuss the progress of
their therapy with you. In addition, you may learn of strengths
or shortcomings of the lymphedema clinic to which you are
sending your patients.
6.
We ask that you acknowledge the link between breast surgery and
treatment and development of lymphedema. Many surgeons
understate the risk of lymphedema, especially in patients having
only one or two lymph nodes removed. There are no standardized
definitions of lymphedema, and follow up is usually much shorter
than 20 years, but at 6 months of follow up, 7% of patients with
sentinel node biopsy developed significant clinical lymphedema
in one study. Lymphedema increases in incidence with prolonged
follow-up. For axillary node dissection the incidence was 49%
after a 20-year follow up, with 1% of additional patients
developing the condition for each additional year of follow up.
-
"Sentinel Biopsy and Axillary
Dissection: Added Morbidity of the Arm, Shoulder and Chest Wall
after Mastectomy and Reconstruction",
(The
Cancer Journal, Vol. 14, #4, July/August 2008);
-
"McLaughlin, S.A. et al.: Prevalence of lymphedema in women with
breast cancer 5 years after sentinel lymph node biopsy or
axillary dissection: Objective measurements."
(Journal
of Clinical Oncology, Vol. 26, No. 32 (November 10), 2008: pp.
5213-5219);
-
"McLaughlin, S.A.:
Prevalence of lymphedema in women with breast cancer 5 years
after sentinel lymph node biopsy or axillary dissection:
Patient perceptions and precautionary behaviors."
(Journal of Clinical
Oncology, Vol. 26, No. 32 (November 10), 2008: pp. 5220-5226.)
7.
Consider providing over-the-counter compression sleeves and
gauntlets to each patient who is undergoing breast cancer
treatment. Those garments should be worn at the first sign of
swelling, to reduce the severity of the problem. Every patient
undergoing breast surgery is at risk of developing lymphedema at
some point in her lifetime.
8.
Please don’t tell a breast cancer patient that her risk of
developing lymphedema is “zero” or “minimal” if she had a
sentinel node biopsy rather than full axillary node dissection.
-
"Lymphedema: Management in Era of Sentinel Node Biopsy",
Oncology Times, 26 (4):12-17, 2/24/2004
-
"Sentinel Biopsy and Axillary
Dissection: Added Morbidity of the Arm, Shoulder and Chest Wall
after Mastectomy and Reconstruction",
(The
Cancer Journal, Vol. 14, #4, July/August 2008);
-
"Breast Lymphedema after Breast
Conserving Treatment"
(Acta Oncologica Vol.43, #6, pp.551-557, 2004);
-
"McLaughlin,
S.A. et al.: Prevalence of lymphedema in women with breast
cancer 5 years after sentinel lymph node biopsy or axillary
dissection: Objective measurements."
(Journal of Clinical
Oncology, Vol. 26, No. 32 (November 10), 2008: pp. 5213-5219;)
-
"McLaughlin, S.A.:
Prevalence of lymphedema in women with breast cancer 5 years
after sentinel lymph node biopsy or axillary dissection:
Patient perceptions and precautionary behaviors."
(Journal of Clinical
Oncology, Vol. 26, No. 32 (November 10), 2008: pp. 5220-5226.)
9.
Patients should be informed of the specific location(s) from
which lymph nodes were removed during sentinel node biopsy. The
sentinel node(s) is/are not always found within the axilla.
Because Lymphedema therapy includes massage to redirect lymph
flow away from areas of compromised lymphatic drainage, it is
important for the lymphedema therapist to know from where lymph
nodes were removed.
10.
Any patient who has surgery for breast cancer, including
prophylactic mastectomy, should be given copies of the
National
Lymphedema Network position papers
on
lymphedema risk reduction,
exercise and
air travel,
plus a link to the
National Lymphedema Network
website.
11.
We recommend that "Lymphedema Risk Reduction" classes be made available for
your breast surgery patients, just as “Look Good—Feel Better”
classes are provided for patients undergoing chemotherapy.
This might be something coordinated through a local or regional
American Cancer Society office. In a Lymphedema Risk Reduction
class, a qualified lymphedema therapist would give a presentation,
discuss risk reduction, show everyone what a compression sleeve and
glove look like, and perhaps demonstrate basic Manual Lymphatic
Drainage massage of the arm. Handouts would be provided,
including a list of "red flags" patients should watch out for that
might indicate the development of lymphedema.
12.
All members of the medical profession should take lymphedema
seriously and refer at-risk or affected patients for lymphedema
assessment and therapy. No breast cancer patient should have her
lymphedema progress to Stage 2 or Stage 3 because of lack of
prompt medical referral and attention.
13.
We ask that you and your clinic or hospital staff honor the
wishes of a breast cancer patient who requests that no blood
draws, injections, or blood pressure measurements be done on an
arm at risk of lymphedema. Please instruct all of your nurses
and medical assistants to respect that request, rather than
argue with the patient or suggest that she is wrong or
ill-informed. She is not “being difficult”—she is trying to
prevent the development of a serious, expensive, and lifelong
medical condition.
14.
It would be helpful if you could devise an efficient way for us
to obtain the necessary prescriptions for lymphedema garments or
equipment from your office. The terms and coverage allowances
of our insurance policies vary, but they often require new
prescriptions each year. When we call the customer service
representatives at our insurance companies, the clerks often
cannot tell us whether, or how many, lymphedema garments our
policies cover. They ask us for the insurance code numbers for
those items. We might need help from your office staff when
complying with those requests, and when trying to obtain
approval for insurance coverage.
15.
As a physician who treats women with breast cancer, you are in a
position to advocate for more effective education on lymphedema
and the lymphatic system in medical schools and continuing
education classes. Although the lymphatic system may be covered
as a component of the immune system, those lectures rarely
consider biomechanics and fluid dynamics of lymph flow, the role
of the lymphatic system in protein and electrolyte balance, or
anatomic details of lymphatic drainage patterns. Because
lymphedema can develop many months, or even many years, after
breast surgery, it is important for all physicians and other
health care professionals to be knowledgeable about the
treatment and prevention of lymphedema.
16.
Please do not make it difficult for us to obtain a prescription for an
antibiotic to have on-hand in case of cellulitis. We are not using
antibiotics as "recreational drugs." We may be far from
a doctor, hospital or emergency room at the time we sustain an
injury or develop an infection in the at-risk arm, and rapid
antimicrobial treatment is essential. Multiple studies have
documented that cellulitis is a risk factor for severe lymphedema.
The position of the National Lymphedema Network is that we should be
treated immediately if any signs of cellulitis develop: as there are
access to care issues and lack of wide spread knowledge about
lymphedema, a prescription of antibiotics to initiate immediate
treatment of cellulitis should be the standard of care for all
patients with lymphedema. In this era of overuse of antibiotics and
resistance to prescribing antibiotics, we still need to have the
ability to treat at the first sign of infection—a small scratch, if
left untreated, could mean the development of serious systemic
infection. http://emedicine.medscape.com/article/191350-overview
17.
Please help us learn how to distinguish normal postoperative
swelling from early lymphedema. We do not want to over-react.
We do want to know what signs would signal a more serious
condition that warrants an office visit. We want to know when
we should seek help to keep the situation from becoming advanced
or even irreversible lymphedema. Since many doctors are
unfamiliar with this condition, please refer us to a lymphedema
therapist for evaluation at the earliest suspicion of lymphedema
rather than "wait and see."
18.
Some of the employees at your hospital or clinic who have contact
with breast cancer patients may not be aware of lymphedema as a
complication of breast surgery. We need you to educate your
medical and office staff to be sensitive to our concerns about
the swelling and pain of lymphedema.
19.
The pain from lymphedema can be very difficult for us to control
using over-the-counter analgesics and even narcotic pain
medication. If we complain of continuing pain that we are
unable to control with the medications you have recommended,
please be ready to refer us to a physician or clinic with
expertise in pain management. A consultation with a pain
management clinic can be extremely helpful in improving our
quality of life.
20.
If you perform breast surgery in coordination with a plastic
and/or reconstructive surgeon, we ask that you be sure the
plastic surgeon knows about lymphedema. Worsening of lymphedema
may occur following certain types of reconstructive surgery, so
those surgical procedures might be contraindicated in some
patients. For example, a woman who already has lymphedema in
her arm or breast is at increased risk of developing truncal
lymphedema following a TRAM procedure. Lymphedema can be
triggered in an at-risk patient even when no lymph nodes are
removed. We quote from the NLN
article on
Lymphedema
Awareness Vol. 10, no.3, 2002:
“Some women opt to have the TRAM flap
procedure which uses the rectus abdominus muscle (abdominal
muscle). The muscle, fat and skin are pulled up to the breast
area without cutting the original blood vessels. This procedure
requires a large abdominal incision which is somewhat of a
concern, especially in the patient with bilateral mastectomies
and existing arm lymphedema, since there are very few options
left in the body for re-routing the lymph fluid (and since the
procedure weakens the abdominal wall)."
21.
“Lymphedema” should be listed as a post-surgical risk on the informed consent
documents we sign prior to breast surgery and radiation therapy.
22.
Please be sure you and your medical staff members are aware of
the current information regarding risks and prevention of
lymphedema. It is not uncommon for patients to be told they
“should not lift anything over five pounds,” or, conversely,
that they have no risk of lymphedema so no precautions are
necessary. We recognize that medical professionals may disagree
about the magnitude of the risk of lymphedema, especially with
less extensive nodal surgery. We also acknowledge that patients
may over-react when informed of their risks. However, because
of the serious consequences for our quality of life with a
diagnosis of lymphedema, and the lifelong risk, we prefer that
you give each of us clear information about this condition and
the steps we can take to reduce our risk, so that we can make
informed decisions on our own behalf.
-
Please
don't argue with your patients when they ask you not to do
any procedures (venipuncture, injections, blood pressure
measurements) on their “bad” or at-risk arm. Exactly what
triggers development of lymphedema, and which patients will
develop it, are not known. We would rather be too cautious
than sorry.
-
Realize that, just because the swelling is not visible to
you, that does not mean your patient does not have lymphedema.
-
Be
observant. Your patient may be wearing a medical alert
bracelet or other identification that
warns
about restrictions on the use of
on one or
both arms. She may be wearing a compression sleeve or
bandage. Please take the time to read and note (chart)
those items, and understand their significance. Your
patient is especially dependent on you when she is under the
influence of sedatives or anesthesia.
Please pay attention to
any
alert
bracelets
and/or
g-sleeves
that we may be wearing to
identify ourselves as either having lymphedema or being at risk
for lymphedema.
-
If you
work with breast cancer patients in a hospital or outpatient
surgery setting, please check to see that a sign is posted
above the bed, warning that the left (or right) arm
(or
both arms)
should
not be used for venipuncture, injections, or blood pressure
measurements. If there is no sign, ask that one be
placed there. If there is a sign, be sure the other medical
staff see it and comply with what it says. And, please
don't allow other staff members to argue with the patient or
insist on using the at-risk arm just because the other arm is less
convenient.
-
If you
are a nurse-educator, be an advocate for your breast cancer
patients and their nurses. Arrange for inclusion of
lectures
on lymphedema in nursing programs and continuing education
courses. Ask that lymphedema prevention and management be
included on licensure or certification examinations.
-
We
know it is more difficult to take the measurement of
blood
pressure from our thighs or draw blood from, or place I.V.’s
in, the veins of our feet. Sometimes
that is our only recourse, if both our arms are at risk or
are already affected by lymphedema. So, be sure you
and your colleagues know how to take a blood pressure
measurement on a patient’s leg. Be sure you can draw
blood from, and insert an I.V. catheter into, a leg or foot vein. If this
is difficult for you, find someone who can assist you.
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