And another reminder that I am a patient – not a medical
person. My comments are based on my own experiences and
others and I take full responsibility for my opinion and
perceptions. My hope is that patients will speak up and
question the medical people trying to help us when need be.
They can’t help us without an open and honest dialog.
That said, Lymphedema treatment is available. Finding the
right help at the right time is not easily available and getting
the right treatment for the right diagnosis is sometimes
difficult. So is finding the right medical help match for a
patient yet both are key to a patient’s survival and the best
quality life possible.
Did you ever wonder how many frogs the fabled Princess kissed
before she found the right frog? Well, if frogs were medical
providers, patients occasionally need to kiss lots of frogs to get
the right match.
Lymphedema is nasty stuff and I was sorry to learn lymphedema
can be a real problem for cancer patients, especially breast
Lower leg lymphedema disease is apparently different though
since cancer caused lymphedema support groups don’t allow ‘regular’
lymphedema patients to join. I know because I looked
for close by lymphedema support groups and learned Harrison Medical
Center had one. I called to ask if I could attend a
lymphedema support group session and the Harrison spokesperson
didn’t think so. She did promise to ask at the next meeting
and let me know. That was several months ago.
During the pleasant phone conversation, Harrison’s spokesperson
asked how I knew I had lymphedema and I had to say I assumed it was
caused from years of ignoring edema and pitted edema.
Her question stayed with me though and I recently asked my
pulmonologist at the University of Washington Medical Center what
caused it and his answer surprised me “Sleep Apnea”
…something to do with ‘insufficiency’…wow, Dr. Christopher Goss, I
need to learn more about that!
Lymphedema is lymphedema or isn’t it? When is lymphedema
not lymphedema if
Harrison Medical Center’s Lymphedema Support Group is limited
only to cancer patients?
I’m happy to say there is good news for ‘Breast Cancer-Related
JAMA. 2010 Dec 8. Weight Lifting for Women at Risk for Breast
Cancer-Related Lymphedema: A Randomized Trial.
Schmitz KH, Ahmed RL, Troxel AB, Cheville A, Lewis-Grant L,
Smith R, Bryan CJ, Williams-Smith CT, Chittams J.
University of Pennsylvania School of Medicine and Abramson
Cancer Center, Philadelphia (Drs Schmitz and Troxel and Mss
Lewis-Grant, Bryan, and Williams-Smith and Mr Chittams); Department
of Dermatology, University of Minnesota Medical School, Minneapolis
(Dr Ahmed); Physical Medicine and Rehabilitation, Mayo Clinic,
Rochester, Minnesota (Dr Cheville); and Department of Physical
Medicine and Rehabilitation, University of Pennsylvania School of
Medicine, Philadelphia (Drs Cheville and Smith).
Context Clinical guidelines for breast cancer survivors without
lymphedema advise against upper body exercise, preventing them from
obtaining established health benefits of weight lifting. Objective
To evaluate lymphedema onset after a 1-year weight lifting
intervention vs no exercise (control) among survivors at risk for
breast cancer-related lymphedema (BCRL)
Weightlifting May Not Increase Risk for Lymphedema in Breast
Laurie Barclay, MD
December 17, 2010 — A slowly progressive weightlifting program
for breast cancer survivors does not increase the risk for
lymphedema, according to the results of a randomized controlled
equivalence trial reported online December 8 in the Journal of the
American Medical Association.
“Breast cancer survivors at risk for lymphedema alter activity,
limit, activity, or both from fear and uncertainty about their
personal risk level, and upon guidance advising them to avoid
lifting children, heavy bags, or other objects with the at-risk
arm,” write Kathryn H. Schmitz, PhD, MPH, from the University of
Pennsylvania School of Medicine and Abramson Cancer Center in
Philadelphia, and colleagues. “Such guidance is often interpreted
in a manner that deconditions the arm, increasing the potential for
injury, overuse, and, ironically, lymphedema onset. Adherence to
these precautions may limit physical recovery after breast cancer
and, for some women, result in lost employment.”
The goal of the study was to compare onset of lymphedema after a
1-year weightlifting intervention vs a no-exercise control group
among survivors at risk for breast cancer–related lymphedema (BCRL)
who were enrolled in the Physical Activity and Lymphedema
“We specialize in the treatment of acute and chronic orthopedic
injuries and the evaluation and treatment of swelling disorders
including lymphedema and vascular insufficiency.”
FREQUENTLY ASKED QUESTIONS ABOUT LYMPHEDEMA:
1. What is Lymphedema?
Lymphedema is an abnormal accumulation of protein-rich fluid
(lymph Fluid) and specialized cells (fibroblasts, keratinocytes) in
the spaces between tissues throughout the body. When the lymphatic
Fluid cannot be readily moved from the extremity to the trunk
swelling is seen in the limb.
2. What causes Lymphedema?
Lymphedema may be primary or secondary. Primary is when swelling
is the result of lymph vessels that are too small, too few in
number or too wide so the valves cannot work properly.
Secondary occurs from some kind of damage to the system. This could
include surgery for lymph node removal, radiation to treat cancer,
trauma or parasites that block the lymphatic vessels.
3. What are the symptoms of
Symptoms include tightness, swelling or thickening anywhere in
the trunk or extremity, feelings of heaviness in the extremity,
difficulty fitting into clothing in one specific area. Swelling may
increase with activity and decrease with rest.
4. Why did I get Lymphedema?
Medical science is not able to determine why one person gets
lymphedema and the next person does not. It probably has to do with
the number of lymphatics you had originally and what percentage are
5. Is Lymphedema curable?
Lymphedema is not curable; however, it is manageable with
6. What kind of treatment is available for Lymphedema?
There is a treatment approach called Complex Decongestive
Physiotherapy(CDP). This method consists of several parts including
manual lymphatic drainage, bandaging, proper skin care, compression
garments, remedial exercises, and self-manual lymphatic drainage
and bandaging. This treatment can be done by a physical therapist
that has extensive training in the subject.
6. What happens if Lymphedema is not
Lymphedema is chronic and progressive. If it remains untreated
the protein-rich fluid continues to accumulate which could lead to
increased swelling and hardening (fibrosis) of the tissues.
The protein-rich fluid is a perfect environment for bacteria to
flourish which could lead to recurrent infections. Untreated
lymphedema can also lead to skin breakdown and loss of motion in
the joints of the affected limb.
We have one life and, my opinion, a patient’s best bet is to get
educated about whatever we have and learn how to best handle
Kitsap County Library System has a book on Caregiving for
Lymphedema at the main library.
There are other helpful books the Silverdale Library
(360-692-2779) had donated to them:
100 Questions & Answers about Lymphedema
Lymphedema: An Information Booklet
Lymphedema Management: The Comprehensive Guide for
Melissa at the Center for Orthopedic & Lymphatic Physical
Therapy in Port Orchard mentioned using a soft baby brush to clean
the affected skin and it worked fine once my husband duck taped the
baby brush to a section of pvc pipe. The extra length makes
leaning over easy for a lung patient and he made two – the second
one I use to apply the skin lotion. Dry skin cracks too
easily for lymphedemia’ites.
I thought you’d enjoy seeing this old car photo. December
2009 I was rushing to Harrison Silverdale ER but had to stop to
take this photo! I don’t know why the old car was there, what kind
of car it is, who owned it or why it was parked with the stuffed
critters outside the ER.
Part 4 of 4
More later… Sharon O’Hara