The Need for Lymphedema Education: A Patient's Perspective

Anonymous Patient With Lymphedema

This is a patient's opinion about the need for lymphedema education.
The person wishes to remain anonymous so as not to risk identification
of the facility where her experience occurred. She has given
permission for the newsletter to print the article and was thrilled
that the Lymphedema Management SIG wanted her opinion.

I was a 43-year-old community-health nurse, a mother of two with no
family history of breast cancer when I was diagnosed with infiltrative
ductal carcinoma in 1997. Not having worked in an oncology setting
since my student days, I reviewed my 1970s-era medical-surgical
textbook on breast cancer etiology, treatment, and complications. On
the day of my preoperative assessment, I asked my healthcare provider
what complications I should be prepared for, including specifically
asking what the chances were of developing lymphedema after breast
cancer treatment. I was told that I did not have to worry about
lymphedema, as it did not occur anymore following breast cancer
treatment with current procedures.

Over the 12 weeks after surgery and in the midst of radiation therapy,
I experienced successively an infection of the breast treated with
oral antibiotics, transient swelling and tenderness of the affected
forearm monitored with observation only, lymphangitis and septicemia
resolving with oral antibiotics, and septicemia, lymphangitis, and
erysipelas with extreme swelling and blistering of the affected arm,
requiring several weeks of IV antibiotics. The final episode of
septicemia led to chronic and moderately severe lymphedema (greater
than 2,000 ml difference in limb volume as compared to the
contralateral limb), which continues today.

Based on my personal experiences and the observed experiences of
friends and colleagues who are breast cancer survivors, I believe it
is honorable and ethical to inform women (and men) newly diagnosed
with breast cancer of the potential treatment outcome of lymphedema
(possibly related to surgical removal of lymph nodes and radiation
fibrosis) and of the best understanding of risk-reduction practices,
which patients can carry out as self-care activities to prevent
lymphedema development. Visit www.lymphnet.org for the latest risk-
reduction recommendations from the National Lymphedema Network.

Had I known what I know now (as the popular song goes), I would have
insisted on aggressive antibiotic therapy at the first signs of
infection and follow-up with infectious disease specialists
knowledgeable about septicemia and its management. Prevention and
management of infection is key in preventing and managing lymphedema.

See also:

Lymphedema People

http://www.lymphedemapeople.com

http://onsopcontent.ons.org/Publications/SIGNewsletters/lym/lym17.1.html