Nodes removed How Many?Have you developed Lymphedema

rianne2580

I had 10 removed and my BS said stretching, exercize, arm movement immediately after surgery. She even ordered it while I was in the hospital following R/M. I'm pretty fit anyways and followed her advice, got on the treadmill, used my arm doing laundry, emptying dishwasher, changing sheets...

I got a terrible case of poison ivy 2 weeks ago, still have rash but not itching. No LE yet. Figures it's on the arm of the surgery. I wish they would study LE more and figure out why some get it and others don't. Why it can rear up years later. My dog keeps me really active as I toss the tennis ball with my right arm over and over. I try to keep my arm above my head while sleeping, not always. When I sit in a chair, I raise my arm above my head and rest it on the back of the chair. Have not worn a LE sleeve, but I have one in case. I also massage myself everyday. My arm, my incision for at least 10 minutes. I message the scar area and whole chest area to keep down any swellilng and to avoid cording.

ftblmom3

Here is something interesting my RO said to me- i ended up having 8 lymphnodes removed, a small amount showed up in one. She felt that was very good odds as they had taken 8 out. If they had only taken 2- then that would have been 50% ln nodes as opposed to taking more out and now it was only 1 in 8 nodes (lol can't do percemtage on that) anyway their feeling was they did not feel it was in anymore so going in after more nodes would cause me more problems so my Radiation plan included the underarm area also.  (by the way-my surgeons original plan was to go in after the sentinel lymph nodes, usually people have 2 or 3 i think, i for some reason had 5, plus a couple other lymph nodes "stuck" to them, lol, that was how they explained it to me, right after surgery she told my sister she took 5, but when the path report came back, they actually had taken 8.) I have not had any LE issues, knock on wood, though i am fairly active so that may help.

shirleya

I might have it.  5 nodes taken out on each side 1 positive on each side. Noticed small swelling around elbow today and have had swelling under arm for a while.  Was told once when showed doctor that this would be absorbed by time. Bilateral Mastectomy 4/21. Stage 11 . 1 tumor in each breast. He said he got it all .    62 and living alone.   Oh my.

kira66715

Shirleya, can you get a referral to a lymphedema therapist from one of your doctors? Even if they deny it--very common--it would be so helpful to you to get evaluated and taught how to manage it.

Early detection and treatment is very important.

Here's a link on how to find a therapist:

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

It sounds like you've been through a lot, and sometimes we have to fight to get lymphedema care, but you deserve an evaluation.

Let us know how you're doing.

Kira

shirleya

I already have the referral in place.  I have appointment on Friday morning to check it out. They were recommended by my doctor but not sure if trained in L.  This has been a year for me. 

Thanks

Chemo 2 on Wed.

cindy2

26 lympnodes removed. Severe cording after surgery.  First Flare of LE about 20 months after surgery despite wearing compression garments.

kira66715

Cindy, the British Medical Journal article on prevention of LE with early PT showed it helped: EXCEPT for the women with severe post op cording: about 80% of them developed LE despite the intervention. That's how I developed it 3 weeks post op--and I was seeing a PT and LE therapy.

Cording is thrombosed/clotted lymph vessels which sure stresses our lymphatic system.

Kira

FireKracker

Hi Sistas especially Binney and Kira

thank you all for all the info on Edema/lymph.I have mild Edema and thanks to you ladies its under control.I saw a wonderful certified LANA Therapist for 7 tx.Got a compression bra that i wore 24/7.and i still wear it occasionally.I do exercises daily for the arm.take good care of the breast(massages daily) and now graduated to a great sports bra that i also wear 24/7.I still occasionally wear the compression bra but the swelling went down to almost normal...Im sure ill never wear a regular bra but i feel great....thanks to you (the experts) and all the wonderful info im starting to feel normal again...Just wish the white coats wouldnt blow us off like its not a big deal.just cut down on the salt.yea right!!!!!!!!RO noticed it right away not the BS,onco or internist....

hugggggggggs and God bless.K

BTW I had 7 nodes removed including SN.I also heard that edema and lymph.are cousins!!!!!!!