Lymphedema

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RP66
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Re:Lymphedema - Tuesday, September 28, 2010 11:59 AM
Thank you B4 for your quick response!  I am going back to the pt next week.  I never knew that tramflap could cause lymphedema and even the dr/surgeon didn't seem to know either.  They said maybe from my hysterectomy??  So in a way, I'm glad that you have heard of this happening to someone else.  I can't imagine having to wear a garment on my leg, that will throw me over the edge.  So, I'm hoping that massage helps keep it under control.
Thanks again for 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

sharonma
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Re:Lymphedema - Thursday, September 30, 2010 11:36 AM
Didn't know if I should start a new thread to ask a question.  I am two years out R mast /3 Lns.  So far have had no signs of lymphedema, .I have flown 4 times since my surgery on flights less than 5 hours, still no problems.  I am planning a 8 1/2 hour flight next month and am wondering if a longer flight poses a higher risk?  Should I be getting and wearing a sleeve for prevention, or is it not necessary?  
Thanks for any guidance!
Sharon 
dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

redspark
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Re:Lymphedema - Thursday, September 30, 2010 8:23 PM
Sharon,  The ladies on this forum convinced me to get a sleeve (and my lymphedma center also recommended the gauntlet (glove)).   They and my dr said why risk it?  The key is getting measured for it as wearing the wrong size can be worse than not wearing one.  I was lucky and could use one "off the shelf".  I thought measuring meant "custom"  made but that's not so.   Marianne
Marianne

Diagnosis: IDC Grade 1/3, Estrogen receptor +, progesterone+, Her2 neg  (9/2009) 
-Modified radical right breast mastectomy, kept areola, with  expander; 1 node positive
-A/C (4 Jan-Apr 2010), Taxol (12 Apr -July 23 2010)
- I'm done with chemo!!!!!!
Reconstruction surgery 9/10/2010


B4
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Re:Lymphedema - Tuesday, November 09, 2010 3:50 PM
There's an article about lymphedema after breast cancer in the Washington Post!

http://www.washingtonpost.com/wp-dyn/content/article/2010/11/08/AR2010110803739.html?hpid=sec-health

Every little bit of awareness helps!
B4

DC LFG
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Re:Lymphedema - Thursday, March 17, 2011 3:19 PM
Excellent discussion thread! Keep up the great information on a condition that we don't seem to want to talk about much. Also you are correct more lymphnodes removed means more of a chance for lymphedema.... However, I have seen it in just one removed. So keep them informed.
Laurie
Laurie

NP- Breast Oncology
Doctoral Candidate- U of M- Go Blue
University Prof
Impacted on by beautiful women survivors of Breast Cancer everyday.

"Live Life to the Fullest Everyday! One never knows what Tomorrow will bring! Don't miss a Thing."


TSB
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Re:Lymphedema - Wednesday, April 13, 2011 9:53 AM
Thanks for all of this information.  They think that I may have lymphedema, first they want to rule out a blood clot.  I had surgery last September so this is kind of a suprise.  My major concern right now is if the insurance will cover the therapy and compression sleeve and glove.  Called but they said they would have be get something from the therapist first before they can determine if it will be covered.

WillowMother
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Re:Lymphedema - Thursday, April 14, 2011 6:16 PM
Due to the nature of my job, child care, I was told it would be wise for me to wear a sleeve daily.  So after treatment when I started back,  I was fitted for a sleeve and wore it daily during work for 6 months.  When I went in for a follow-up with my Radiologist last month he noticed that I had dimples on the skin of my arm from the lines of my sweater.  He said you have lymphedema.  I was sent to a lymphedema specialist and it was suggested that I get a type 2 compression sleeve, which has more compression.  I also got a reid sleeve to sleep in.  It is a real drag, but I find when I don't wear my sleeve and use the reid sleeve, my arm shows signs of swelling.  Wearing the glove has helped my hand from looking puffy too.  I have surrendered and just wear them now.  I hope I can make it through the summer.  I have ordered a tattoo looking sleeve and glove from Diva Sleeves~figured I might as well have a little fun with it.  
My insurance (Aetna) covered all of it.  Therapy, sleeves, and Reid sleeve.


<message edited by WillowMother on Thursday, April 14, 2011 6:18 PM>
~Willow 49         
9/3/09 IDC Stage III 6cm. Nodes Positive ER+PR- HERs2 +
24wks Taxol/Herceptin/FEC                 
3/2010 Surgery Lumpectomy & Node dissection          
Rads x33  & Herceptin
11/15/12 Local Recurrence/Unilateral Mastectomy
DCIS & IDC HER2+
12/19/12 Beginning Navelbine & Herceptin      



Her Dotness
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Re:Lymphedema - Sunday, May 08, 2011 12:02 PM
sharonma


Didn't know if I should start a new thread to ask a question.  I am two years out R mast /3 Lns.  So far have had no signs of lymphedema, .I have flown 4 times since my surgery on flights less than 5 hours, still no problems.  I am planning a 8 1/2 hour flight next month and am wondering if a longer flight poses a higher risk?  Should I be getting and wearing a sleeve for prevention, or is it not necessary?  
Thanks for any guidance!
Sharon 

I'm late coming to this thread, so perhaps you'll already know this, Sharon, but the OT who recommended I get a sleeve and gauntlet as a preventative said that every BC patient should be fitted with one if you fly anywhere, certainly if you fly often. She said that it's the changes in air pressure that encourage swelling so even though we've never flown longer than four hours at a time, I should definitely put on a sleeve and gauntlet an hour before takeoff and leave them on for at least an hour after landing no matter how short the flight. No caffeine or alcohol before or during the flight either, she said, as both can encourage fluid buildup. 
 
During any longer flights, she said to get up and walk as I can and flex my feet occasionally each hour as swelling in the lower legs is common once your lymph system has been damaged anywhere else in the body.
 
I already have problems with my left ankle swelling which I've had since having tendonitis badly in that foot years ago, so I'm planning to heed her advice scrupulously.
 
Dot
dx 11/29/10 DCIS/IDC
1/5/11 lumpectomy, SLND 2+, ALND - 
T1c, clean margins!
er +/pr + (My little nasty was an estrogen drunk, said my med onc.) HER2 -
Chemo: TC Done 4/30/11 
Rads:  Done 6/30/11 
Arimidex 7/11-? 

ElaineQW
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Re:Lymphedema - Friday, May 13, 2011 9:29 AM
I came across a video report regarding lymphedema and lifting weights which I hope you will watch.  You all know that I believe that exercise (cardio and weight lifting) is very important to our well-being. 

http://news.yahoo.com/video/health-15749655/25218505


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 
 






cindyanne56
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Re:Lymphedema - Tuesday, June 21, 2011 9:59 PM
Hi Ruthie...my right arm and hand has been swollen for a few weeks..Guess it is because nodes are involved under my arm with cancer, as I have not had any surgery or nodes removed. Could it be from biopsies taken there? It used to feel tight and hurt in my hand but seems to have gone down a little and doesn't hurt any more. I told my oncologist, and he said to elevate it and I need to be fitted with a sleeve....am checking that out tomorrow.
Cindy Ankney Chatsworth,GA

Her Dotness
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Re:Lymphedema - Sunday, December 09, 2012 2:53 PM
I'm bumping this thread to remind everyone how important it is to get baseline measurements taken before you have radiation. Radiation can cause or aggravate existing lymphedema, and you definitely want to know if there's been any change in your arm or trunk size that might indicate lymphedema. Without a baseline set, it may be more difficult to catch a developing case of lymphedema making it more of a challenge to reduce the fluid buildup than otherwise. In fact, it's a good idea to ask for a referral to a lymphedema therapist to get baseline measurements taken before you have any treatment at all so that you'll have a record of your before-treatment measurements for later comparison if the need arises. This is something that most doctors don't mention, but it's very important and can save people much discomfort and expense later on. 

Incidentally, after I had a nasty experience with a staph infection this past spring, my breast surgeon told me that anyone who had nodes removed, sentinel or axillary but particularly axillary, should be watchful of any unusual redness, pain or swelling anywhere on your body. Once your lymphatic system is damaged somewhere, an infection that starts up far from the surgical site may be carried to the area where drainage isn't what it once was. When that happens, you can be in trouble in no time at all. 

It's very important to keep your skin well lubricated. The staph infection I had probably resulted from a tiny crack in my skin that I didn't even notice. I had no idea that I needed to be THAT vigilant, but now I know better.

It's also a good idea to keep a tube of antibiotic ointment on hand so that you can smear some on any tiny little hurt as soon as you notice it in hopes of fending off any worse infection. One woman I know said that she keeps a tube of that at work since she often gets paper cuts. Her co-workers think she's just paranoid, but she said her breast surgeon told her that what's just an annoying paper cut for others could be disastrous for her.

Lymphedema can be managed if you catch it early. I'm extremely thankful that mine turned out to be mild because I had a rads oncologist who sent me for baseline measurements before I started treatment. When my lymphedema therapist compared my arm measurements, she said she suspected I already had lymphedema from the surgery. Further assessments indicated that was so, and I began massage therapy and wearing a compression sleeve right away.

As a result, my arm is very gradually reducing. My rads onc said recently that as long as I wear my sleeve all day every day for the foreseeable future, it's possible that I may reach a point when I'll only need it when doing anything strenuous or flying. It's annoying, but permanent damage is not something I care to have to deal with.

Lymphedema is serious stuff. I'm very grateful indeed that my treatment team informed me so well and referred me to massage therapy quickly so that lasting damage could be prevented.
<message edited by Her Dotness on Sunday, December 09, 2012 2:55 PM>
dx 11/29/10 DCIS/IDC
1/5/11 lumpectomy, SLND 2+, ALND - 
T1c, clean margins!
er +/pr + (My little nasty was an estrogen drunk, said my med onc.) HER2 -
Chemo: TC Done 4/30/11 
Rads:  Done 6/30/11 
Arimidex 7/11-? 

Dancer
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Re:Lymphedema - Sunday, August 11, 2013 7:19 PM
I did not suffer from lymphedema after my first BC surgery, but with my recurrence in the axilla and the removal of the lymphatic chain my arm and hand have been swollen from day one and with radiation it has become worse - I didn't need my sleeve but now the arm throbs without. Does anyone have any advice on controlling this? I've surfed the web, but I really need to hear from someone that's been there done that. Thanks! Dana
age 49 (HB, CA)
IDC & DCIS R/breast, ER/PR+ HER2-, no nodes!
BiLat Mast. 2-1-08 w/immediate reconstruction
4 rounds A/C, done 6/11/08
Strong Family Hist.
carepages: doodlebuggy
RECURRENCE 2-1-2013 - five years to the day! Stage IIIb - yikes! Nothing is more important than this day.

ElaineQW
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Re:Lymphedema - Monday, August 12, 2013 8:14 AM
Dana -  You've sure had your share!!  I didn't have lymphedema, but there have been recent articles on how lifting light weights can help.  I don't have the link but you might google it (google is now a verb - how nice :)  

Keep on kickin' its ass girlfriend!

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 
 






Tricia Keegan
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Re:Lymphedema - Monday, August 12, 2013 10:17 AM
Dana are you in touch on FB with Ruthie?? (Ruth Coates) if not I can put you in touch with her as she wrote some good articles here on lymphedema and had it herself I believe, you could also try sending a pm to a member here posting as B4, not sure if you remember her but she's an expert on lymph and suffers  from it herself although hasn't posted for ages. I'm sorry you have this issue too on top of everything else and I recall being told the earlier you get help for it the better.

P.S  This is Ruths post http://apps.komen.org/Forums/tm.aspx?m=270752
<message edited by Tricia Keegan on Monday, August 12, 2013 10:18 AM>
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

Dancer
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Re:Lymphedema - Thursday, August 15, 2013 12:49 AM
Thanks Tricia, I will try to pm her - I did read where she bumped her message. I have already seen a lymphedema specialist - it just got so much worse once rads started - I started wearing my sleeve and that helped, but my hand is still swollen and I'm a little worried about infection as my nails are falling off on that hand from the chemo. Grrrr.
age 49 (HB, CA)
IDC & DCIS R/breast, ER/PR+ HER2-, no nodes!
BiLat Mast. 2-1-08 w/immediate reconstruction
4 rounds A/C, done 6/11/08
Strong Family Hist.
carepages: doodlebuggy
RECURRENCE 2-1-2013 - five years to the day! Stage IIIb - yikes! Nothing is more important than this day.

Tricia Keegan
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Re:Lymphedema - Thursday, August 15, 2013 3:52 PM
Ouch you don't need that Dana, if you can't get hold of Ruth I can put you in touch via FB with her as I'm sure she can offer some good advice, do you have many more Taxol to go??
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

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