Marianne wrote: << I think it is because nerves were damaged, because there is
no
swelling, although it "feels" swollen.  So don't worry too much about
lymphedema.

Marianne, it is good that what you have is not  lymphedema, but lymphedema is a
reality and can be a big problem which is both frustrating and serious.   I
know of several with lymphedema--including my mom.  Mine isn't 'that' bad
(compared to some pictures I've seen) but it has the potential of becoming that
way if treatment is NOT done routinely.  In addition I still have a problem
with wearing some clothes.  I HATE it.  It has affected the quality of my life
so much more than the loss of my breasts have.  I don't know whether or not I
was getting it after surgery, but my elbow hurt after surgery for quite awhile.
I was sent to an occupation therapist and then the physical therapist who
eventually said I had the beginnings of lymphedema.

One reason your MD was not helpful about Lymphedema possibilities, is that it
may reflect somewhat on the surgeon.

I know my surgeon was proud to say in an advance meeting that his hospital's
rate of lymphedema was significantly lower than the standard.

Also, I am five years out, and only recently does my arm feel nearly normal.  I
had strange sensations and the feeling of an orange in my armpit for years.

Deb

I'm three weeks out from a lumpectomy with several nodes removed.  I
had a lot of swelling under my arm immediately post op, but the
swelling has drained by itself. My arm/armpit was feeling much better
until a few days ago and now I'm experiencing severe discomfort down
the surgical side of my body and around and under the breast, the
involved breast is very, very tender and somewhat swollen. The
incision under my arm is a little red but not warm to the touch. I'm a
little confused about exactly what is lymphedema? I see the surgeon
that did my lumpectomy tomorrow for port insertion, are there any
questions I should be asking him?
Darla

Ann wrote <<  the only things that (in largely retrospective studies)
have shown correlation with lymphedema are (1) trauma to the arm, or (2)
weight gain after surgery.  (Those of us taking Tamoxifen have reason to
feel grumpy about the latter!)

I had 12 nodes removed and 9 were positive.  I took all the precautions and
have not had any trauma to that arm.  However, I still got lymphedema.  I have
worn both regular sleeves and now wear custom sleeves, one during the day and
one at night, and the lymphedema is slowly worsening.
Residual cancer cells may 'cause' and/or worsen lymphedema  as well.   Of
course I hope that is not what is going on, but at this point have no  idea.

Cathy, I'm sorry you had such trouble. It IS a problem getting it on by
yourself, its touch to pull, hard on the opposite shoulder and you do break
alot of nails. I  trimmed my nails, and kept tugging til shoulder got
stronger, I worked real hard, takes alot of patience and getting up early,
but that's what I did. I also worked full time, volunteere dhours a week at
church, and run a home computer business, have 2 kids 3 grandkids and a big
house with a cat to care for. all that's what kept me fighting at it til it
got easier.

I encourage you to keep trying, as Cathy implies, the bandaging and sleeves
ARE worth it; if you stop it can indeed get worse or even permanent. You
don't want permanent fibrosis, weaked or useless joints. If PT says bandage
and sleeve, and teaches you self massage the DO it. (that part is REAL
important to keep swelling down, do it whenever you aren't out in public,
and don't have a sleeve on...TV time, sit around time..falling asleep time
etc).

Bandaging keeps the swelling down and I found it best at night. Sleeve keep
the masage going during the day, enhancing the movement of your skin, and to
some extent helping keep the swelling down. Thats my opinion, YMMV.

I found it frustrating as it did consume time and I'm always late and in a
hurry, and it was difficult to type (my business), but I did it. Now its
relatively under control, at least no permanent damage, on only occasionally
need bandaging. I still always massage, almost a habit. I'm now 3 yrs from
lumpectomy w/9 clear nodes, chemo & radiation. Breast is still swollen and
tender, more lumpy than usual (they call it peau d'orange - skin of an
orange, cause that's the kind of surface the breast has where they did the
last 6 days of electron radiation). I am alive thru the docs and grace of
God. The rest is just tiny bumps in the road.

One other poster said about how docs might take lymphedema in their patients
personally. My surgeon had a REAL ego problem. When I showed up at my first
after-surgery visit, I said I had lymphedema and showed him he said "It
can't be, I didn't do anything that could have caused that; I didn't even
get NEAR the area that would cause that!" Needless to say, I didn't go back
to him for anything else, and turned others from him for breast surgery.

But alls well that ends well. Merry Christmas, focus on the good things, and
manage the bad as best you can. I REALLY love my grandson I probably
wouldn't have seen without this trip thru the hospital etc.

Ann in PA