lymphedema started

[LAURIE]

About 3 weeks ago my left hand felt like I hit it and was bruised. I did not see a visable bruises nor did I hit it. As you can see from my signature: I had surgery on 11/30. A week and a half ago my hand started swelling. I now cannot see my pinky and ring finger knuckle and my whole arm feels tight. I went to chemo on tuesday and today I am going for a lymphedema evaluation from a therapist.

I went to the surgeon yesterday and showed him the swelling. ( I remember sitting in the same room before surgery talkking about how this may happen and how he said it is so rare.) Well after examination by the surgeon he thought I had a seroma under my arm,and drained it. I wish this had something to do with the lymphedema but I know it dosen't. He is sending the fluid to the lab, I just cannot even imagine it comes back something other than fluid.

Otherwise, I am real excited to see what the therapist says today about controlling the lymph and cannot even imagine what swelling I am in store for with radiation coming up in 6 weeks.

[lexigirl]

Laurie,

I am so sorry about the lymphadema. I check my hands and arm all the time. Hopefully you've caught it early and with some therapy it will get under control.

I will say a prayer for the fluid to come back clear of any cancer. I hope your rads goes much better.

Hugs,
Lexi

p.s. I had a dear friend who moved to Massilon when we were in high school in 1984.

[Lani]

on lymphedema prevention/treatment. It was given by a PhD located at Ohio State University(since you are in Ohio) who is a breast cancer survivor herself and has had two axillary node dissections (one after her initial tumor was discovered, one after her recurrence), and developed lymphedema herself after the first.

The graphs she showed showed it to be very rare(but not impossible) to develop lymphedema in the first few weeks after surgery--it is much more common to develop it later.

If the surgeon was able to drain something off this long after surgery that is unusual. The character of the fluid--how much protein, how many blood cells, etc determines if it was a seroma or hematoma, but a hematoma would probably have congealed and been more like tomato-aspic and not been drainable with a needle this long after surgery.

Seromas can cause venous back-up by compressing the structures necessary for return of blood and perhaps to lymph as well.

Have you been keeping your arm elevated above heart level to try to get the fluid back down with gravity (works better for venous blood than lymph)? Have you regained full range of motion of your shoulder.

Should you want to get in touch with this researcher I will look to check her name on the lecture schedule.

[Lani]

"Lymphedema Prevalence and Prevention"
Electra D. Paskett, PhD
Marion N. Rowley Professor of Cancer Research, Division of Epidemiology, School of Public Health, Ohio State University; Associate Director of Population Sciences, Comprehensive Cancer Center, Ohio State University

PS you did not say if you had a sentinel node biopsy or axillary node dissection (full) How many lymph nodes were taken?(if you don't have the operative report it usually says something in the pathology report) Did you have a short or long incision?

Full of questions, aren't I?

[LAURIE]

yes, I have regained full shoulder use and arm movement. I had all nodes removed. Which I am glad b/c 10 out of the 15 were positive. The fluid the surgeon drained yesterday was yellowish and clear like.

I really thought I was out of the clear with elevating my arm, because I felt tlike I was doing everything I did before surgery, but I am now back to elevating. When this first started 2 weeks ago, I really started doing the fist exercises above my head, but it seemed to get worse. I also thought that Taxol was causing some of this. I am pretty puffy all over and my fingers tips and toes are pretty numb.

In regards to Ohio State.(Kent State grad) I did not go there but I did go to high school with Stephanie Speilman, who has played a large part in breast cancer awareness and especially at the hospital by Ohio State. Her story has been inspiring to me, being diagonsed so young and having a child after chemo. If I lived closer to Columbus I would go to doctors there. I do feel good about the doctors I have been in contact with so far here around home.

[tousled1]

I suffer from lymphedema of my right arm and at times it is extremely uncomfortable. I've found a dvd called "The Lebed Method" that is extremely helpful. You may want to check out the website www.lebedmethod.com. My local community center just started a class on the Lebed Method so I go there on Monday evenings. The exercises are simple to do but really help drain the lymphatic fluid.

[tricia keegan]

Laurie

There's a very good post on the Komen site right now about this so you may like to check it out.
Tricia

[Catherine]

Hi Kate,
I just went on line and ordered the Lebed Method DVD. ($34 with shipping) I really do not have lymphadema (yet?). I do have a lot of stiffness. I go to PT which is wonderful. I do my exercises. Decided a DVD would be nice to have and then I could learn about the LEbed method. Will let you know how I do with the DVD.

Thanks, Catherine

[Sherryg683]

I played tennis for years before my cancer and played during my chemo...nothing was going to keep me off the courts. But like an idiot I overdid it, was not kind to my arm. It was fine for awhile but then I started getting symptoms like tennis elbow. So completely not thinking, I bought this brace that you put on your arm for tennis elbow. It's this little strap with a gel pad that you strap around your forearm to relieve stress on elbow. I was in the middle of a match, when my friend and tennis teammate (who had breast cancer 9 months before me) screamed at me from another court. "Sherry look at your arm , take that damn thing off your arm". I looked down and my arm and hand look like a ballon. I had been so careful not to let anyone take blood pressure in that arm, why in the world would I think it would be OK to put that strap on it. I just wanted to play tennis pain free. Needless to say, I haven't been able to play for months now, my arm swells and aches when I try. I had lymph massages and have ordered the electric pump to help when at home, haven't gotten it yet. I have a sleeve that I wear when on airplanes but it didn't really help on my last flight. My arm doesn't swell really big, but darn does it get painful....sherryg683

[tousled1]

Catherine,

I think you'll find the dvd helpful. I should do the exercises every other day but lazy me doesn't do it. I tend to wait until my arm is aggravated. Maybe I'll learn to be proactive instead of reactive one of these days. Good luck to you

[LAURIE]

I went for evaluation and will have massage therapy twice weekly to get swelling down, do home exercises and wear a temp sock/sleeve till the swelling goes down and then get my sleeve made for my hand and my arm.

Kate, did your lymphedema start before or after rads. I am real nervous about upcoming rads and more swelling. Hopefully my swelling will be down before I start.

[tousled1]

Laurie,

My lymphedema started shortly after I finished my 35 radiation treatments. Make sure you stay out of real hot showers/baths, not saunas or hot tubs.