Visit Komen.org
Lower Your Risk
Prev Thread Prev Thread   Next Thread Next Thread
 Lymphedema
Change Page: < 12345678 | Showing page 8 of 8, messages 71 to 76 of 76
Author Message
Her Dotness

  • Total Posts : 564
  • Reward points : 4525
  • Joined: 12/13/2010
  • Location: St. Louis, MO burb
  • Status: offline
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

  • Total Posts : 739
  • Reward points : 9840
  • Joined: 12/13/2007
  • Status: offline
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

  • Total Posts : 4705
  • Reward points : 10730
  • Joined: 4/1/2008
  • Location: San Diego, CA
  • Status: offline
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

  • Total Posts : 19215
  • Reward points : 13520
  • Joined: 1/1/2005
  • Location: Ireland
  • Status: offline
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

  • Total Posts : 739
  • Reward points : 9840
  • Joined: 12/13/2007
  • Status: offline
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

  • Total Posts : 19215
  • Reward points : 13520
  • Joined: 1/1/2005
  • Location: Ireland
  • Status: offline
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
Change Page: < 12345678 | Showing page 8 of 8, messages 71 to 76 of 76

Jump to:

Icon Legend and Permission
  • New Messages
  • No New Messages
  • Hot Topic w/ New Messages
  • Hot Topic w/o New Messages
  • Locked w/ New Messages
  • Locked w/o New Messages
  • Read Message
  • Post New Thread
  • Reply to message
  • Post New Poll
  • Submit Vote
  • Post reward post
  • Delete my own posts
  • Delete my own threads
  • Rate post

© 2000-2008 ASPPlayground.NET Forum Version 3.1.5