You would think an RN of 26 years would have known more about
lymphedema. The only education on lymphedema I can recall from my nursing training was don’t take blood pressures or draw blood from an
arm on the same side as a mastectomy. That was it. No training on
what exactly lymphedema was, who got it, how did you treat it, etc.
So when I got my first diagnosis of breast cancer in 2000, I knew
from my frantic cancer research that lymphedema was a potential side
effect of treatment, but at that moment my concern and primary focus
was the cancer. After all, if the medical professionals didn’t
inform us on the risks of lymphedema in detail, then how much of a
problem could it really be?
Well to be fair, I LOVE my
medical professionals. Both my surgeon and oncologist are
responsible for me still being here today. If not for their
expertise and knowledge, my outcomes would have been very different.
I think in part, secondary lymphedema is not given emphasis in the
heat of an initial cancer diagnosis or during the treatment planning
phase because let’s face it, CANCER
is the big issue taking center stage at the moment. I accept that
with our current level of technology, effectively treating an
invasive cancer will damage our bodies. We cut it, introduce
toxins, radiate it and destroy our normal hormonal balance in an
effort to eradicate the cancerous cells. As a result we learn to
deal and live with pain, scar tissue, reduced range of motion and
function, peripheral neuropathies, chemo brain, fatigue, arthralgias,
sleep disturbances, depression, the list goes on and on.
My big gripe, however, is that for a condition like lymphedema, which can
impact more than 40% of cancer patients and cause lifelong, chronic,
major disruptions to quality of life, WHY
are we not spending more effort on its PREVENTION as opposed to telling patients they will just have to “learn to live
with it” after the fact? I am so excited to hear about all the new
research to find less destructive, more targeted therapies for
treating cancer and yet I feel that the issue of lymphedema has not
yet made it to mainstream consciousness in that effort.
I suppose this has been the path taken historically for most disease
processes over the years. Only when a disease affects massive
numbers of people, or people who are persistent and vocal enough to
be heard, will steps be taken to find its prevention and cure.
That’s why I am so excited about this website and the fact that a
small group of dedicated, very vocal lymphedema patients are
“Stepping Up” and “Speaking Out”.
Change IS coming, sometimes
slower than we would like, but I have every hope that one day
secondary lymphedema will no longer be the “dirty little secret” of
cancer treatment and a person with primary lymphedema will not be
told to “just lose weight”. One day lymphedema will be given equal
time in medical and nursing school textbooks, medical professionals
will be the ones who initiate baseline measurements and patient
education PRIOR to the start
of surgery or radiation treatment; lymphedema patients will be fully
equipped with the bandages, garments and tools they need to preserve
their quality of life as much as possible; lymphedema therapist
training will be standardized to guarantee consistent high quality
and effective care; and the insurance companies will actually
PAY for treatment required to keep
lymphedema patients out of the hospital and adequately maintained
for this lifelong, chronic condition.
Call me a dreamer, but I believe it will happen one day!
Well, back to my personal experience with lymphedema. The treatment for
my first diagnosis of breast cancer in 2000 involved a lumpectomy,
sentinel node biopsy, chemotherapy, radiation and tamoxifen. I
religiously protected my right arm (the treated side) from blood
pressures and needle sticks. My left arm was used for chemo
including the dreaded Adriamycin (red devil), blood pressures and
blood draws. I happily never showed signs of lymphedema in my right
arm and 5 years after my initial cancer diagnosis I declared myself
cured! Three months after my 5 year anniversary, however, I was
found to have another breast cancer, a new primary in the other
breast, unrelated to the first.
This new cancer was much more locally advanced. In December 2005 I had
a modified radical mastectomy on the left and a simple prophylactic
mastectomy on the right. While I started out with a sentinel node
biopsy on the left, I ended up having to have a total axillary
dissection of all three levels of nodes. 23 nodes removed, all 23
positive for cancer.
I was already aware of my risk for lymphedema on the right side and now
was facing higher risk on my newly diagnosed left side. After
informing myself about the pros and cons of ports versus peripheral
IV chemo, I opted to have my chemo given peripherally in the right
I had already begun seeing a PT, CLT therapist immediately after my
surgery to start the range of motion exercises, get baseline arm
measurements and to be trained in basic lymphedema prevention. I
thought I was doing everything I could, but I was still not prepared
for the onset of lymphedema in my left arm. A little over 2 months
after my surgery and during my 3rd chemo cycle I
developed Hand/Foot syndrome, a side effect of the oral chemo Xeloda.
The palms of my hands and soles of my feet became inflamed, swollen
and painful. Overnight, my left hand, wrist and forearm began to
swell and I knew that I had lymphedema.
I don’t know if it was the inflammation of the hand/foot syndrome that
sped up my lymphedema process or the combination of having had total
axillary dissection and an already scarred vascular system due to
the earlier chemo, but my lymphedema was somewhat atypical in its
rapid development of fibrotic tissue. Add to that 6 weeks of
radiation and my lymphedema quickly became stage 2. The key factor
that caused my lymphedema to take a positive turn towards reduction
of fibrosis and overall improvement was finding wonderful,
knowledgeable, certified lymphedema therapists who could think out
of the box and individualize their treatment methods to my specific
Psychologically, lymphedema can be a challenge. You have to adjust to
an altered body image, loss of normal strength and functionality in
the affected limbs, constant paranoia of getting cuts, burns, bug
bites or injuries that will land you in the hospital with an acute
infection and the “fear of flying” takes on a whole new meaning, all
while having to be your own best advocate and “educator” when
dealing with other healthcare professionals.
It has been a long, long process getting to the point I am at now. The
6 weeks of looking like the Michelin man with my bulky bandages
during my intensive treatment period, the endless nightly wrapping
with short stretch bandages until I was finally able to get my
JoviPak nighttime sleeve. The daily
skin care, daytime
LTU-904 Low Level Laser,
all tools in my arsenal for managing my lymphedema.
Thankfully, I am seeing slow but consistent improvement in my arm
volume, tissue consistency, functional mobility and comfort level.
I know I can never stop being vigilant in my daily maintenance, but
it is gratifying to see my efforts pay off in meaningful ways.
I am very grateful to have received all the support I have from the
various sources of information like the
NLN (National Lymphedema
Norton School of Lymphatic Therapy
and all my wonderful therapists and lymphedema friends.
I am currently an 8 year survivor of my first breast cancer, a 3
year survivor of the second cancer and a successful manager of my
lymphedema. I hope to personally see many more years of
research and treatment discoveries that will ease the burden of this
path we walk and will perhaps eliminate future patients from ever
having to deal with these same issues. We all have a voice.
It’s time to
Step Up and Speak Out!
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