Lymphedema

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Ruthie1956
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Lymphedema - Friday, February 27, 2009 12:26 PM
Hello,
I just wanted to get things started here on this thread because of the many survivors who have to deal with this issue.  Lymphedema is the back-up of fluid in your arm or trunk due to the removal of one or more lymph nodes.  Even if you just had 1 or 2 nodes taken, this interrupts flow of lymph fluid from arm and trunk.  It can be very subtle like a fullness in your chest wall, or a tingling in your armpit, or you can have swelling and warmth in your affected arm. 

It is very important to minimize the swelling or prevent it from returning as much as possible.  When the tissues fill with fluid it can be very hard to get that fluid back out of the area. There are specialists in physical therapy who can help redirect and massage the fluid in the right direction.  Sleeves can be worn, but MUST be fitted to YOU, to be effective.  No drug store varieties will do.

Care must be taken to keep the arm/area moisturized to prevent any little cracks or open areas which would let in infection.  If an infection occurs you may get even more swelling and thus have more fluid to move out.  The slightest injury can be a big problem even if it never is infected.  The inflammatory process sends lymph into the area to clear debris.  If there's no place for that to go, you have a breeding ground for infection.

I have been dealing with lymphedema for over a year since I had shoulder surgery.  I had to do the surgery, but was not prepared for the enduring swelling in my arm.  I finally developed a strep infection from an unknown source in that arm and trunk and was very seriously ill for several days.  Hopsitalized, PICC line antibiotics, the big guns!  I am recuperating well, but am getting outta town for the warmth of Fla.  I have to take extra antibiotics (by mouth) with me in case it flares again.  My oncologist told me this will not be the last time this happens.  I am more careful now, but it can be anything, anytime.  Be vigilant and careful
Love Ruth


Diag. 7/06 2 lumpectomies, no clear margins
Inflammatory BC, DCIS and IDC
Chemo Aug 06-Dec 06
bilat mast 1/07
Radiation 2/07-4/07
Tried all AIs (ER/PR +, Her2 -) 
NED thus far, have RA now

Cancer is like quicksand, the more you struggle alone, the deeper you sink; but if you relax, spread yourself out and reach for help you are rescued! (rufus mcaine)

Tricia Keegan
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Re:Lymphedema - Friday, February 27, 2009 12:52 PM
Thanks for the info and tips Ruth which I'm sure many on the forums will appreciate.
I hope you're feeling back to your old self very soon and am sure the Florida sunshine will help that along!   Have a wonderful time.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

B4
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Re:Lymphedema - Friday, February 27, 2009 1:01 PM
Wow, Ruth, that's a great introduction -- thanks! I'm really sorry about the rotten cellulitis and hope you don't ever have to revisit that experience. 

I wanted to add (because nobody told me this until I found it out for myself the hard way!) that we're ALL at risk for lymphedema, for the rest of our lives. I have lymphedema following a prophelactic mastectomy, so I know for sure that any damage to the chest/breast area puts us at risk. More nodes removed raise the risk, as does radiation (especially to the axilla and supraclavicular area). Other heightened indications of risk are post-surgical seroma or "cording" (Axillary Web Syndrome), weight gain after surgery, diabetes and other vascular problems, previous trauma or surgery to the chest/breast, and possibly surgery on your dominant side. Still other risk factors still aren't understood, so we all need to consider simple risk reduction practices.


There's information on risk reduction (and lots of other breast cancer-related lymphedema topics) at http://www.stepup-speakout.org


It's really too bad when any of us breast cancer warriors have to join the "Sorority of Swell," but I hope we can use this new board to support one another as we face off with the challenges and demands of this crummy condition.


Thanks, Komen administrators, for thinking of us!
B4






Tricia Keegan
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Re:Lymphedema - Friday, February 27, 2009 4:43 PM
B4,

Thank you too for the link and info and very glad to know you welcome this new forum to share experience's with other 's affected with lymphedema.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Ruthie1956
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Re:Lymphedema - Tuesday, March 03, 2009 9:37 AM
Hi all,  I heard one doc (not onc) who told someone else (a patient) that because they only took 2 nodes that it would not give her any risk for LE.  I saw him out at the desk and quickly disabused him of this notion.  (I knew him and so he listened).  After HE heard me out he looked up more information, printed it off and went back in and talked with the patient again.  I also gave him the idea to refer her to the LE clinic just to get limber again and learn the massages etc to prevent LE.

We must educate ourselves and others and be proactive on these and other issues.  We have to be our own advocates!

I was just glad that I was available to direct him to the correct info.

Ruth
Diag. 7/06 2 lumpectomies, no clear margins
Inflammatory BC, DCIS and IDC
Chemo Aug 06-Dec 06
bilat mast 1/07
Radiation 2/07-4/07
Tried all AIs (ER/PR +, Her2 -) 
NED thus far, have RA now

Cancer is like quicksand, the more you struggle alone, the deeper you sink; but if you relax, spread yourself out and reach for help you are rescued! (rufus mcaine)

B4
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Re:Lymphedema - Tuesday, March 03, 2009 3:05 PM
Way to go, Ruthie! When we can help educate the medical professionals we can hope other women will get the straight facts and be able to protect themselves or get good, prompt treatment. Kinda big job, though!

Have you seen this page for printing out and giving to doctors/nurses about lymphedema?
http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm
It even talks about the issue of a few nodes being still a risk. So much to learn--so much to teach!
B4

DJW
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Re:Lymphedema - Tuesday, March 03, 2009 4:43 PM
Really useful information! Thank you for posting this.
Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)

RP66
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Re:Lymphedema - Tuesday, March 03, 2009 9:25 PM
Thanks for starting this Ruth!  I have a question for you ladies that are in the medical field.  As you know I am going to school and we have days at our clinical site(nursing homes).  My lymph has been acting up and has been swelling and aching more than ever.  What do you wear to work?  It would be impossible to wear a sleeve and glove there becuase of washing hands and germs being carried around.  So what do you ladies do?  I'm in the process of getting an appt for another evalutation by the lymph specialist and I hope she can suggest something.
Thanks for any ideas!
Rene'~OH
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
er/pr+,her2+
a/c/t&herceptin
rbrst mast/hyst 3/07
33rads 6/07 Tried the AI's for 18 months & switched to Tamoxifen~much better for me! 
Bilateral Tram-flap 4/08 Revision-left 7/08 
New surgeon revisions: 5/09-8/09-8/10  
Dec 2010  Finally finished! 
cp:RenePetrovich

B4
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Re:Lymphedema - Wednesday, March 04, 2009 9:47 AM
That's really hard, Rene. My medical-professional friends with lymphedema can't wear gloves in clinical work, so they have to work really hard at keeping it under control the rest of the time.

It sounds like you haven't seen a lymphedema therapist yet? Do find one who's well qualified -- at least 135 hours of specifically lymphedema training beyond her/his OT or PT certification. Here's a page about finding a well-trained therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Or check out the Position Paper on Training at the National Lymphedema Network:
http://www.lymphnet.org


Once you and your therapist have your lymphedema under control, you can help keep it that way even on clinic days by doing extra Manual Lymph Drainage massage before and following work. During the day, take a few minutes from time to time to do some deep abdominal breathing (stimulates the pumping action of the  lymph system), clear the nodes in your neck and axilla (your therapist will show you how), and do a few simple exercises (raise your arm above your head and slowly pump your hand open and closed several times). Try to avoid heavy lifting with that arm (yeah, right! -- at least make sure you're using both arms together, not that one alone). During whatever breaks you can manage to grab, elevate your arm (with support -- don't tire it).


Sigh! Nobody said living with lymphedema was easy!


Do let us know how it goes with finding a therapist and managing the clinical work,
B4

RP66
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Re:Lymphedema - Friday, March 06, 2009 6:22 AM
Thanks for the help B4.  I had been to a lymph therapist back in 07 and actually broke the affected arm.  I had therapy after the cast was off and have been pretty lucky with it.

I went to get re-evaluated yesterday and she is going to have me start wrapping after school/clinical.  I was suprised how poor my range of motion is, so she gave me exercises for that.  We want to get things moving because I am having another revision May 4.

I appreciate your help!
Rene'~OH
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
er/pr+,her2+
a/c/t&herceptin
rbrst mast/hyst 3/07
33rads 6/07 Tried the AI's for 18 months & switched to Tamoxifen~much better for me! 
Bilateral Tram-flap 4/08 Revision-left 7/08 
New surgeon revisions: 5/09-8/09-8/10  
Dec 2010  Finally finished! 
cp:RenePetrovich

ElaineQW
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Re:Lymphedema - Friday, March 06, 2009 8:50 AM
Hey Rene,

Just wanted to say hi to you.  Sorry about the lymphedema.  After reading this thread I'm still amazed at how pro-active we have to be throughout this experience.  

I'm doing just fine, but after insisting on an ultrasound (not just a mammo) on my good boob, they found "a little something" 2mm, and I will have biopsy on Tuesday.  I figure it's a 50/50 crapshoot :)  

Take good care,
Hug,
Elaine

 A person's greatness is the power to stand alone;to be able to make her own choice; in action,to write anew her own law; to choose her own sacrifices; run her own dangers; win her own freedom; venture her own destruction; to choose her own happiness 
 






RP66
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Re:Lymphedema - Friday, March 06, 2009 2:32 PM
Hi Elaine,
I'm sorry to hear about the biopsy.  Will be keeping good thoughts for you on Tuesday.  It does seem to always be something.  This lymphedema stuff is crazy.  Luckily mine has stayed mild but I have felt some changes and they wanted to see me.

Thanks for the message.  I will be watching for your update.
Take care.
Rene'~OH
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
er/pr+,her2+
a/c/t&herceptin
rbrst mast/hyst 3/07
33rads 6/07 Tried the AI's for 18 months & switched to Tamoxifen~much better for me! 
Bilateral Tram-flap 4/08 Revision-left 7/08 
New surgeon revisions: 5/09-8/09-8/10  
Dec 2010  Finally finished! 
cp:RenePetrovich

Ruthie1956
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Re:Lymphedema - Tuesday, March 10, 2009 8:18 AM
Hi Rene'!

Sorry to be so long in answering this as I forgot, (duh) that I started it...LOL

In answer to your question, I wear my sleeve, but not the glove, to work.  That way I can wash my hands still.  Mostly I use the alcohol foam stuff, but I wash every 5th time or so, and put antibacterial lotion on when I do.  (Provided by the hosp where I work)  All of this will dry out your hands so use an antibacterial lotion or inlieu of that Keri lotion on those hands.  Keep them moisturized.

Elaine, I'm PM ing you today!
Love Ruth
Diag. 7/06 2 lumpectomies, no clear margins
Inflammatory BC, DCIS and IDC
Chemo Aug 06-Dec 06
bilat mast 1/07
Radiation 2/07-4/07
Tried all AIs (ER/PR +, Her2 -) 
NED thus far, have RA now

Cancer is like quicksand, the more you struggle alone, the deeper you sink; but if you relax, spread yourself out and reach for help you are rescued! (rufus mcaine)

fuzzypeach
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Re:Lymphedema - Friday, March 20, 2009 1:07 PM
Does lymphedema last the rest of ones life? Or will it eventually lesson up? Just wondering...
Linda age 61
Hixton,Wisconsin
Stage 1,early 1mm R.b
ER/PR+
wires/surgical biopsy July 24
R.Mastectomy/nodes Aug.21
All nodes neg/no cancer cells
Lymphedema,rt.arm- Tamoxifen
If you can DREAM it,you can DO it.

Ruthie1956
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Re:Lymphedema - Saturday, March 21, 2009 9:36 PM
LE can recur after going away for awhile.  You can  get the swelling down, but the skin kind of has a memory for this and any little cut, scrape bite etc, is gonna get it going again.  Thats why we need to be so careful.  If you have a decent sleeve, wear it when you do unusual activity with your arm.  Try your darnedest not to get sunburned or bit by anything nor scratched by anything.  The tiniest innocent poke or break in the skin (I mean you MUST moisturize that arm at least!) can let in a bacteria that may set up shop right where you can't get at it easily.

There are those who have LE of the trunk or another limb...this goes for these areas as well.  Sunscreens are a must, summer is almost here!

Watch how you go thru daily activities...cutiing up food for dinner, heck walking thru doors..I'm clumsy and I bounce off walls and door jambs all the time.  Once I careened off a door jamb and hit my bad arm, bruised up a bit didn't even notice because its NUMB ya know?  My onc was very stern with me. 

It sounds scary, but really its just common sense.  Take it easy, don't be in a hurry, be careful with that arm.
Love Ruth
Diag. 7/06 2 lumpectomies, no clear margins
Inflammatory BC, DCIS and IDC
Chemo Aug 06-Dec 06
bilat mast 1/07
Radiation 2/07-4/07
Tried all AIs (ER/PR +, Her2 -) 
NED thus far, have RA now

Cancer is like quicksand, the more you struggle alone, the deeper you sink; but if you relax, spread yourself out and reach for help you are rescued! (rufus mcaine)

terri67
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Re:Lymphedema - Saturday, April 18, 2009 9:27 AM
I think I am experiencing my first flare up. It happened real sudden. My arm is swollen, red, hot and in pain.
 
I just put in a call to the Dr. it is Saturday so I don't know when I will get an answer back.  I have been taking advil pretty regular to help with the pain.
 
I keep reading that once you have it it can NOT be cured,   What does this mean ?
Does it mean my arm will always be swollen like this from now on , or does it me it can happen again at any time. ? 
 
Thanks,Terri67
age:41
Dx: 9/24/07 IDC
10/17/07:lumpectomy & sentinel node.
10/22/07:re-excision. & 1/18nodes+
Stage: 2a.,ER/PR+,HER2+
11/12/07: port
11/15/07: 1st.chemo.
Taxotere,Carbo.,Herceptin
5/12/08:Radiation finished.
Tamoxifen

JulieS
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Re:Lymphedema - Saturday, April 18, 2009 12:37 PM
Terri,
I don't have lymphadema but did find this for you on www.breastcancer.org.

http://www.breastcancer.org/tips/lymphedema/

If you click on the sections to the left there is more information, including how to manage at home.
If it gets to bad, go to the ER......it could be something else, so don't put it off.

Let us know..........and hopefully someone with first hand knowledge will be here soon.

Hope and strength,
Julie S





JulieS
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Re:Lymphedema - Saturday, April 18, 2009 12:45 PM
Terri,
After re-reading your post, I have been thinking it could be infected and you really should be seen by someone.....the infection could spread (like it says in the sudden onset part of the lymphadema link I sent for you)  If I were you I wouldn't wait till Monday.  The longer something like this goes on the harder it may be to get rid of.

Good luck......please do let us know!


terri67
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Re:Lymphedema - Sunday, April 19, 2009 8:58 AM
Thanks JulieS for the information.

The Dr. on call called back rather quick and said I should go to the ER because since it happened so sudden it could be a blood clot. 
I went to the ER where they did an ultra sound of the arm and did some blood work, there was no clot, thank goodness. they said it was cellulitis that is mentioned on the site you gave me. 

they gave me an IV of antibiotics and a prescribtion of antibiotics for at home. if it doesn't improve by monday I need to go back so I can get the IV treatment again.
age:41
Dx: 9/24/07 IDC
10/17/07:lumpectomy & sentinel node.
10/22/07:re-excision. & 1/18nodes+
Stage: 2a.,ER/PR+,HER2+
11/12/07: port
11/15/07: 1st.chemo.
Taxotere,Carbo.,Herceptin
5/12/08:Radiation finished.
Tamoxifen

B4
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Re:Lymphedema - Monday, April 20, 2009 1:29 PM
Good morning, Terri,
How's it going this morning? Hope things are clearing up well. Please let us know!
Hugs,
B4

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