I also have lymphedema.  I was aware of discomfort right below my elbow upon
wakening from surgery--bilateral mastectomy with 12 nodes removed (9 were
positive.   I was measured for a sleeve a few months later.  I did all the
'right' things--exercise and massage but, still it progressed.
I went through bandaging and it improved somewhat and got custom sleeves.  It
was better for awhile, but I think the sleeve has worsened the condition--at
least in my case.  (Why do I always have to be the exception? Sigh...)  I will
try and explain.  One of the cardinal rules re. lymphedema is not to wear
anything constricting.  Well, in my case the sleeve was constricting at the
top--like a rubber band.  So, from my lower arm being the worst--just a small
area below the elbow, I have developed difficulty in my upper arm.
I wear a custom sleeve both night and day--but it has still progressed.  The
sleeve sort of maintains it.  I was also able to get pumps to use.  I rarely
use them though--although think that it may have helped more from the start.
The problem with the pump--you're supposed to do it 3 to 4 hours/day.
My husband has a patient--a male who had breast cancer who uses the pump each
morning--I think--and nothing else.
Now Ann mentioned that lymphedema starts in the hand so she has to wear a
glove.  That's not necessarily true.  My hand is fine--almost always.  I never
wear a glove.  In fact I insisted the make the night sleeves without them.
Once in awhile I do get swelling in my hand--but again, only once in awhile.
However, even with the sleeve, it still swells.
I think it is time for me to do the bandaging again.  I am waiting for a time
when I don't have to do alot of typing at work--have to write up reports.
Oh, and I forgot to mention--there was a gal who posted here until recently.
She was dx'd with stage IV breast cancer.  She developed lymphedema and that
was what led to the diagnosis.  She never had any kind of surgery on her breast
or lymph nodes.  That, however, is the exception.
Lymphedema seems to be different for each of us in some ways.  I have a cousin
who was dx'd with breast cancer last year who has it only in her hand.
I have read of a surgical procedure, though, which can help--
Re: Lymphadema cure  Posted by" J "on September 21, 2002, 8:54 am , in reply to
"Lymphadema cure"  "After my surgery and reconstruction, I had an infection in
the reconstruction. I was mild but persistent. By the time all that cleared up,
I had the beginning of lymphadema. I went to PT, did massages, wraped it, did
the exercises and it preceeded to get worse. Any kind of movement in my arm
caused more swelling. After my chemo, my oncologists sent me to Dr. Raju. He is
the retired surgeon that taught at the University of Mississippi Medical
School. The nurses at the hospital told me that he had patients from all over
the world come to him for surgery so I assume he has quite a reputation. He did
a lymphagram and a veneogram on my arm. It was determined my lymph nodes were
working just fine. My circulation in the arm was blocked. About 4 inches of my
Subclavian vein was closed almost completely. There was another vein that
branched off that was blocked also. I had 2 stents put in last December. During
my third checkup in March, he told me to do Arobics. I told him that my arm
would swell if I did. He smiled and told me to do Arobics. I went home and
started Arobics. Two days later, my arm went down completely. I was stunned. I
actually kept wrapping it for another month just because I thought I had to.
See, I had trouble beliving it myself. One day, I realized my arm didn't change
at all whether I wrapped it or not. I have not wrapped it since April. I was
still wearing a glove at night, but have replaced that with weight lifting.
This morning, it is down to normal. I told him Thursday he had improved my life
100%. I am in Nursing School. I couldn't have even dreamed of having getting a
job like this before. I could not have lifted a patient. By the way, I am 55
and studying my *** off but I am doing very well. Chemobrain messes with my
concentration a bit(or else that is an excuse)but I am out there again. I am a
far cry from that girl that was so depressed last year wondering what I could
do with my life.
If I didn't make this clear, my arm went down initally. It has not swollen back
as bad as it was before surgery. The swelling in my arm that remained was very
minor, but that is gone also. My hand went down, but my fingers still get
slightly puffy. I can wear my wedding rings, but I don't for fear that my hand
will get puffy if I get hot. I expect that to be gone soon. "
Another person responded--
"Posted by" G "on November 18, 2002, 5:26 pm , in reply to"
"The surgery" J "posted about was having stents placed in veins or arteries
(forget which) to keep them open and keep blood flowing (like they do with
coronary arteries). As such, it would not really be curing lymphedema, but
treating swelling caused by blockage of veins or arteries, something very
different.
Here is another article that talks about doing surgery--liposuction:
http://www.aphroditewomenshealth.com/news/20020314231723_health_news.shtml
26 March 2002
"Novel Treatment Transforms Lives Of Breast Cancer Patients
A unique operation by Swedish surgeon Håken Brorson is bringing new hope to
breast cancer patients who suffer from persistent lymphoedema - a disabling
condition resulting in grossly swollen and painful arms and loss of mobility in
the affected limbs.
He is using liposuction - a treatment more usually associated with the beauty
industry - to treat the condition, and has transformed the lives of his
patients.
When lymph glands in the armpit are removed during breast cancer surgery to
prevent the cancer spreading the lymph often cannot drain away properly and
lymphoedema occurs, leading gradually to an increase in the volume of the
subcutaneous fatty tissue. This phenomenon is poorly understood, according to
Dr Brorson, and is rarely mentioned when speaking of lymphoedema treatment as
both patients and therapists believe that the arm swelling is caused only by
accumulated lymph. The swelling of the arm causes pain, lack of mobility and,
in many cases, considerable emotional distress.
Between 30% and 40% of breast cancer patients are affected to some degree by
lymphoedema after breast surgery and radiotherapy. Current treatment by massage
such as manual lymph drainage (MLD) and the wearing of a compression sleeve can
remove the lymph component of the swelling if carried out early enough.
However, in long-standing cases where fatty tissue hypertrophy (enlargement)
has developed it is not always successful as adipose tissue cannot be removed
by massage or compression. Nor are there any surgical techniques that are
completely effective.
Consultant plastic and orthopaedic surgeon Dr Brorson and his team at the
Department of Plastic and Reconstructive Surgery at Malmö University Hospital,
have developed a novel type of liposuction which removes the fatty tissue and
accumulated lymph via about 20 small (2mm) incisions along the arm. Patients
are then instructed to wear a compression sleeve permanently, taking it off
only for a short time for special occasions.
Dr Brorson told the European Breast Cancer Conference in Brussels today
(Thursday 28 September) that he had operated on 64 patients with an average
oedema volume of 1.8 litres who had suffered from serious lymphoedema for a
mean duration of nine years. He had followed up his patients for six years.
"We removed, typically, around two litres of fat from the arms of these
patients via liposuction. After two weeks their arm swelling was reduced by
72%, by 80% at one month, 88% at three months, 93% at six months, and 98% after
one year. The reduction subsequently continued slowly and at six years it was
104% - the treated arm becoming a little smaller than the healthy arm. In
addition, the range of movement in the shoulder joint increased and pain and
discomfort in the arm and hand diminished, improving the daily lives of our
patients considerably."
Dr Brorson stressed that it was absolutely vital that the patients continued to
wear the compression sleeve after liposuction to prevent lymphoedema building
up again which would lead to more fatty tissue accumulating and, in turn,
increase the lymphoedema further - a vicious circle of cause and effect.
"Lymphoedema is an extremely distressing side-effect of breast cancer surgery
in many women and this is a promising new treatment for chronic cases where
there is a considerable component of fat in the lymphoedema and conservative
treatment has therefore not been effective.
"It can change patients' lives: I shall always remember one of my patients
telling me how much it meant to her to be able to walk into a shop and for the
first time in many years choose a dress, confident that it would fit her and
look good on her."
The Lymphoedema Unit at the Malmö University Hospital has been listed in the
Sweden's National Board Catalogue of highly specialised treatment since 1998.
Dr Brorson has taught the technique to plastic surgeons from several university
hospitals in Sweden and it is now available nationwide.
Please note that we cannot respond to health related questions via email.
Please see your physician for advice regarding health concerns."

There seemingly isn't a lot of solid research on exercise & lymphedema
yet, either with respect to whether exercise causes/prevents lymphedema,
or relieves/worsens it once it's present.

Anecdotal:  A new member of my BC survivor rowing team has lymphedema.
She's been erg-ing (an "erg" is a kind of rowing machine) three times a
week or more for a month or two now.  AFAIK, it isn't making her
lymphedema worse.  I can ask her whether she thinks it's beneficial, if
you like.

FWIW, to my knowledge none of us who *don't* have lymphedema have
triggered it by rowing, which certainly involves arm exercise more
extreme than lifting 20 pounds.  Several of us also weight train
regularly, including some exercises using > 20 pounds.  Several of us
are enrolled in a Dana Farber Institute prospective study to see what
impact the rowing has on lymphedema incidence.

Ann T.
Remove 'dontsendspam' from address to reply by email

Hi,

Chris and I would just like to thank all of you for your responses.  They
have given some comfort and hope for improvement.

We are getting on with the practical aspects now.  I guess we have to find a
new way of living in some respects.

Thanks again,

Robin and Christine Aston.