National Bureau of Economic Research
NBER: Research on lymphedema

Subject: Research on lymphedema
From: Charles E. McLure (mclure@hoover.stanford.edu)
Date: Mon Feb 09 2004 - 17:50:29 EST


Dear NBER colleagues:
This message has two purposes: 1) to alert you to a Request for
Applications (RAF) for grants from the American Cancer Foundation to study
lymphedema and 2) – in case you need it – to tell you a bit about
lymphedema, a little-known but fairly common life-long disease that should
be the subject of more research, both medical and non-medical. (I am
especially interested in encouraging research on lymphedema because my wife
developed it following surgery for removal of lymph nodes and radiation
therapy to prevent the spread of uterine cancer. Research may not help us,
but it may help others. If I can provide more information, please let me
know.)

1) The Request for Applications
         Attached you will find the RAF mentioned above. See especially
Research Objective 3: “Development of cost/economic analysis on the burden
and treatment of lymphedema.”

2) What is lymphedema?
         When the lymphatic system is impaired, most commonly by removal of
lymph nodes or radiation therapy, it cannot adequately conduct lymph from
the affected part of the body and lymphedema may occur. Lymphedema may
appear "only" to cause disfiguring and uncomfortable swelling, but the
affected limb is highly susceptible to repeated infections, which can
exacerbate lymphedema and may be life-threatening. If lymphedema is left
untreated, fibrosis and elephantiasis can result. (To learn more, see the
Website of the National Lymphedema Network, http://www.lymphnet.org.)
         Many women develop lymphedema in their arm, because of
mastectomies, removal of lymph nodes, and/or radiation treatment for breast
cancer. Others may get it in one or both legs because of similar treatment
for cancers involving the abdomen and pelvic region. This is secondary
lymphedema, which can also be caused by other types of surgery or by
injuries that damage the lymphatics. Secondary lymphedema may develop
shortly after the treatment or injury that causes it, but it may not appear
for many years. Some persons are born with inadequate lymphatic function,
which makes them vulnerable to primary lymphedema.
         It is difficult to ascertain the incidence of lymphedema with
precision, but it can be expected that about 15 percent of women with
breast cancer who have had lymph nodes removed or who have received
radiation will develop lymphedema. Having both lymph node removal and
radiation therapy substantially increases the risk of developing
lymphedema. Given the growing number of people being treated for cancer,
many persons are at risk. See also the excerpt from the RAF at the end of
this message.
         Many persons, including doctors and other health-care
professionals, do not know much about lymphedema. Thus both those who
already have lymphedema and those who are vulnerable to developing it are
often lamentably uninformed.

 From the RAF:
"Lymphedema is an important health problem for many women who have been
treated for breast cancer. About 15% to 20% of breast cancer patients have
developed lymphedema after breast cancer treatment; thus, among more than 2
million breast cancer survivors, approximately 400,000 cope daily with the
disfigurement, discomfort, and disability of arm and hand swelling. Those
survivors without lymphedema who have had surgical or radiation treatment
of the axilla remain at risk indefinitely. Aside from breast cancer
recurrence, lymphedema is one of the most serious sequelae of breast cancer
treatment. Daily swelling of the hand, wrist and arm create both
psychological and physical reminders of the cancer."