question about Lymphedema

becmag · July 2011

I had a lumpectomy and a sentinel lymph node removal (two were removed) five weeks ago. I've been healing nicely and I'm pretty much back to my own self. Today I began to notice that my hand and arm are slightly swollen. I feel this dull pain in my uppre arm. Should I be concerned? Or am I making it a big deal when it is normal to feel this way?

I've been doing my exercises and yesterday I did use my arm alot (right arm and I'm right handed) more than I have since my surgery. I did some cleaning and organizing my closet. Maybe too much?

I appreciate your thoughts,

Becca

YamahaMama · July 2011

Becmag, I'm sure there will be some more knowledgable women than I out here who will catch your post and comment, but in the meantime... Any time you have nodes removed, you are at risk of developing lymphedema. Any swelling is cause for concern, and I think you should ask your doctor for a referral to a lymphedema therapist...

Here is the URL to a website some of the lymphedema experts on this site have created... You can find a ton of useful information here! Best of luck to you!

http://www.stepup-speakout.org/

lago · July 2011

get it checked out. That's how mine started. Best to catch it early.

BeckySharp · July 2011

Becca--I had almost the same experience as you--a lumpectomy and two nodes removed. Two weeks later I had heaviness in my arm and slightly swollen. It was lymphedema which I have been in therapy to learn to control. YES as lago and Yamana say, get a referral to a lymphedema therapist. If it isn't LE that will be great but if it is you will be getting treatment early. I am sure Binney and Kira will give you better advice.

http://www.stepup-speakout.org will guide you to finding a therapist.

Becky

KS1 · July 2011

Hi Becmag,

After having just 2 SN removed, I had achiness in the upper arm and forearm with no swelling. I don't know if that was the beginning of LE for me or just post-surgical swelling because 2 months later, I had another 20 LN removed and soon thereafter developed mild swelling. I have to emphasize the "mild" part -- my arm didn't look bigger, but if I pressed on it with my finger, there was a clear imprint of my finger that stayed ("pitting edema").

You're only 5 weeks post-surgery, so it could just be post-surgical swelling, but I agree with the others, go see a LE therapist. Even if it isn't LE, it would be good to get measurements for future comparison and to get prevention education. ANY doc (internist, medical oncologist, surgeon, etc.) can write a referral, and some have found that their surgeons weren't that keen about doing so. So, if it is faster to see your internist than someone on your BC team (or if your BC docs are reluctant to write the RX), get the script from your internist. My internist wasn't sure what to write the first time, but basically, all the script has to say is something like "evaluate and treat breast cancer related upper extremity lymphedema." I believe the code for it is 457.0, but Kira can confirm. Getting the script is half the battle. The other half is finding a qualified LE therapist who can see you reasonably soon.... Good luck- KS1

ktym · July 2011

Becca,

I'm sure Kira or Binney will be along and are much more knowledgeable. I would get it checked out, not let anyone blow you off about it. That soon post op I would also ask them to be sure you don't have an axillary vein clot in that side. Stay hydrated for sure since most of the US right now is in a heat wave. If the arm and hand progessively swell I wouldn't wait until Monday to call your physician and ask about the clot

In the meantime this is a very helpful link

http://www.stepup-speakout.org/

lago · July 2011

BTW my hand never swells.

Karina121293 · July 2011

I am so glad I came across to this thread and thought to ask about my concerns. I had mastectomy in January this year. I have no swelling in hand or arm, but I have a full/ heavy/ pulling /mild ache sensation in my neck on the same side of mx, as if the scar is pulling something from my neck. Can we have LE in that area?? Any experience with the same??? What else can it be. There is no visible swelling and the US is clear. Any input is much appreciated.

Karina

ktym · July 2011

Karina,

I had what you are describing when my pectoralis muscle was very tight, and back muscles week after surgery. I ended up compensating by using my neck muscles and over time they got really tight. Could be that, LE, or something else, but, I would go get it checked out and into PT

kathleen1966 · July 2011

Sounds like a tiny bit of lymphedema there.....My problem area IS my hand. I went in just for an evaluation and ended up in the full lymphedema program (the wrapping for weeks, then the garmet). I am considered to have mild lyphedema. It is good to control lyphedema before it turns into a serious case of lyphedema that cannot be controlled so you should go see a certified lyphedema specialist.

I am hoping to get the flexi-touch machine soon. Hoping that I can use this once a day and that I will then not have to wear a garmet. They are uncomfortable in the hot summer. And as I have to also wear the glove, people are always asking me what is wrong with my arm....

Karina, I would say what you are experiencing is some cording and NOT lyphedema.....

Binney4 · July 2011

Kathleen, just so it doesn't come as a blow if it happens Tongue out , but using a Flexi-touch sure doesn't guarantee you won't need to wear garments. It's a mechanical help to replace self-MLD, but it's not a replacement for daily compression. Some people get lucky and find that daily self MLD lets them get away with not wearing compression most days, but it's a very individual thing and could go either way.

I use my Flexi for flares, when self-MLD get to be a burden (and one I'm not very effective at, unfortunately), but even when I was using it daily I still had to wear my garments. Sure hope it works out for you that way, but it can be hard to take if our expectations are too high.

Keep us posted!

Hugs,
Binney (who hates being a Bad News Bear! Frown )

becmag · August 2011

Thank you all for your responses. I did see a lymphedema therapist and I like her! I do have some lymphedema but nothing serious at the moment. I learned a lot of exercises I can do at home and I've learned that sometimes I need to "stop and rest" in between my activities.

I really wasn't planning on going to therapy because I thought I was making a big deal out of my swelling but I'm glad I didn't listen to myself. Your input made a big difference and I'm so grateful for your support.

Becca

Binney4 · August 2011

Hey, Becca, good for you! Cool Did she measure you for a sleeve and glove or gauntlet to use for exercise, travel, and any strenuous activities (like cleaning out the closet! Smile )? Keep us posted.