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 Lymphedema
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Tricia Keegan

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Re:Lymphedema - Tuesday, June 16, 2009 6:32 PM
I've never heard of it being soley from rads but only if you have nodes removed first.

I ahd nodes removed but did'nt wear a sleeve when flying and had no problems.
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
Willietattoos

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Re:Lymphedema - Tuesday, June 16, 2009 9:16 PM
Thanks, Tricia. I don't anticipate having any problems, but the nurse planted that "seed of doubt" in my mind. 

I had nothing done regarding lymph nodes, just a simple lumpectomy, so I expect to be fine with regard to lymphedema.
54 y/o, VA
DCIS (calcs found on routine mammo) 1May09
Lumpectomy (0.2cm area of DCIS w/ clear margins)20May09 
ER/PR highly Positive
HER-2 Negative 
Radiation-1st visit to Radiation Camp 6/22/09 
Tamoxifen pending

B4

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Re:Lymphedema - Friday, June 19, 2009 1:27 PM
Hi, Willietattoos,
It's definitely possible to develop lymphedema following lumpectomy and rads, and many women do. It isn't necessary to have nodes removed, as the breast and chest are rich in lymph vessels, which can be damaged by any surgery (even breast augmentation or reduction with no cancer). Rads adds damage and scarring that can further block lymph flow across this vital area.

The risk is lower with no nodes removed, but it's still a risk. What precautions you take will depend on you, but certainly your nurse suggested a simple and helpful protection that may spare you a lifetime of this chronic condition. The catch is that the compression sleeve (you should also have a glove or gauntlet) needs to be well fitted by someone with experience and knowledge. A poor fit can be as bad as a blood pressure cuff. Once you have the garments and know how to care for them, you can use them for exercise, travel, or any strenuous or unusual activity.

Tricia, your experience with flying is really common, and it points out how unpredictable lymphedema development is. My doctors all assured me that with one node removed on my left and a prophylactic mastectomy on the right I would have no problem with it, but I have bilateral arm and truncal lymphedema. What I've discovered after this nasty surprise is that there are lots of other women with the same experience -- few or no nodes taken, and they still develop it at some point, even years later. Some fly over and over with no trouble, then suddenly develop problems after yet another flight. There's just no getting around the risk, which is there for the rest of our lives.

The good news is, there are simple steps to reduce that risk if we care to take them. Should it develop anyway, there's good treatment and help available to control the swelling (but it may take some digging to find it!) I wish all bc veterans would make the effort to get a referral from any one of their doctors to a well-trained lymphedma therapist. S/he will take baseline measurements for future reference, give you personalized risk reduction guidelines, and fit you for compression garments if you decide to use them. I know we're all really weary of medical appointments, but this is one that can spare us a lifetime of grief.

Here's an information page about finding a well-qualified lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Hoping you all avoid joining this sorority of the swollen!
B4


Tricia Keegan

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Re:Lymphedema - Saturday, June 20, 2009 8:08 PM
B4,

Thank you for posting this info, and  I happily stand corrected:)

I honestly did'nt know this and there seems to be be no reason why some women develop this and some don't.

You are right in your post that precautions should be made always, I did'nt follow them myself but thank you for  posting this info and will think twice before flying again:)

I would'nt have imagined there was a risk if no nodes were removed, this is enlightening to me and I'm sure to other's reading this.
I'm sorry I may have give the incorrect  info and will double check next time:)

B4, Do you suggest a sleeve always for flying ??
<message edited by Tricia Keegan on Saturday, June 20, 2009 8:11 PM>
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 - Monday, June 22, 2009 4:10 PM
I think I can weigh in here a bit with further clarification. 

Scenario 1:  No Nodes taken but lumpectomy and rads...may have truncal (in your chest and abdomen) edema due to damage to truncal nodes Solution, an elastic garment which helps move edema fluid to the truncal nodes that are working properly to remove fluid

Scenario 2 one or more nodes in the armpit taken.....could develop arm lymphedema, from any trauma however slight to your arm or hand, fingers nails etc.(ie cuts, hangnails, bruises, bites etc).  Sleeve can be obtained which move the fluid to the trunk. 

Any elastic pressure device for lymphedema should be worn before doing anything strenuous that you normally do not do (ie taking up gardening or polo or raking leaves etc) or for airline flights. Put it on 1 hr before and wear for 2 hrs after the flight to head off any LE.

Thats it.  I learned this from the LE clinic folks who treat the LE in our area.

Hope that clears up some things.;)
Ruth
<message edited by Ruthie1956 on Monday, June 22, 2009 4:12 PM>
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)
Willietattoos

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Re:Lymphedema - Monday, June 22, 2009 9:10 PM
Thanks y'all! This has been very enlightening, altho' I'm not exactly sure what I should do at this point. 

Are you suggesting a consult with a lymphedema therapist even in the absence of any symptoms. 

I had my first Rad. today and I'm feeling a bit vulnerable, I guess.
54 y/o, VA
DCIS (calcs found on routine mammo) 1May09
Lumpectomy (0.2cm area of DCIS w/ clear margins)20May09 
ER/PR highly Positive
HER-2 Negative 
Radiation-1st visit to Radiation Camp 6/22/09 
Tamoxifen pending

B4

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Re:Lymphedema - Monday, June 22, 2009 9:52 PM
Hello, Tricia,
Please don't feel bad about not knowing these things. Lymphedema is breast cancer treatment's "dirty little secret," and few of us are told about it. Part of the reason is that our doctors and nurses aren't trained in it. A survey of U.S. medical schools two years ago by Dr. Stanley Rockson of Stanford University found that the average time spent teaching the lymph system in a student's entire medical school career is 15 minutes. (And no, that's not a typo!) Sigh!!

So we have to do a lot of educating of ourselves, and even of our healthcare professionals. Approaching them as partners can help, and providing them with evidence-based information. There's a page on the StepUp-SpeakOut website that you can copy off and give to your medical team here:
http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm

Wearing a sleeve for flying is somewhat controversial in the lymphedema community, because there has as yet been no careful, double-blind study done. All the evidence for compression sleeves and gloves helping to prevent lymphedema is anecdotal, but there's enough of it to make most therapists and lymphedema organizations suggest it. The National Lymphedema Network, for instance, has Position Papers on Air Travel, Exercise and Risk Reduction that suggest them for women at risk (which includes all bc patients). You can find the Position Papers here:
http://www.lymphnet.org

There are two important guidelines for wearing garments if you have no symptoms (or even if you do!) They are: to make sure the garments are well-fitted by a lymphedema therapist or experienced fitter, and to wear a glove or gauntlet (fingerless glove) with the sleeve to prevent any swelling from becoming trapped in your hand. Here's a page about proper fit of garments, so you can judge for yourself:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

If you decide not to wear garments to fly, consider getting them, trying them out to be sure they're a good fit, and at least bringing them with you in your carry-on baggage. That way, if you develop a problem on your trip you have a way to deal with it. It's no fun landing in some unknown city with a hand the size of a baseball mitt!

Willietats, yes, I really do believe every one of us should see a well-qualified lymphedema therapist for evaluation, preferably even before surgery. Baseline arm measurements are important for judging changes in circumference, and learning what to look for and how to reduce our risk is important for all of us. Also, a good therapist will be able to teach you a simple and gentle massage that you can use prophylactically to improve lymphatic function. If our surgeons had the training and the time to do this for us, that'd be fine. But they don't, so it's up to us to decide how proactive we want to be about preventing and dealing with this.

Hope that helps! Hugs all around,
B4
SandyK

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Re:Lymphedema - Saturday, June 27, 2009 3:08 AM
There is a ground-breaking lymph node transfer surgery being done at St. Charles Surgical Hospital in New Orleans.  You can read about it here:

http://www.breastcenter.com/procedures/lymphedema.php

and here:

http://www.drmarga.com/whatvlntx.html

"A Vascularized Lymph Node Transfer (VLNTx) is a microsurgical procedure where lymph nodes are transferred from a low-risk lymph node basin to a limb with symptomatic lymphedema.  It is a procedure where a lymph node “flap” with an associated artery and vein is harvested either alone or in connection with a DIEP flap.  The flap is subsequently transferred to either the axilla or groin after scar tissue has been removed from the associated neurovascular structures of the recipient site.  Blood flow is re-established to the lymph node flap by reattaching the blood vessels of the flap to the blood vessels found in the recipient site using the magnification provided by an operating room microscope.  Patients with leg lymphedema may require VLNTx at the level of the knee and groin whereby arm lymphedema is commonly treated only with one transfer at the level of the axilla.  Patients with profound soft tissue deformities may require excision of excess skin and liposuction of the extremity in a staged fashion.
Patients resume manual lymphatic massage and compression garments/bandaging post-operatively.  An improvement in soft tissue swelling can be seen in most patients.  Patients relate a decrease in limb circumference"
Dx 5/22/07 7mm IDC, stage 1
ER/PR+ Her2-/BRCA 1/2 -
BM/Stage I DIEP in Torrance, CA
PS refused to address complication, multiple issues
Beautiful results now thanks to Dr. DellaCroce in New Orleans

B4

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Re:Lymphedema - Saturday, June 27, 2009 1:13 PM
Good morning!
Thanks for bringing this up, Sandy. It's sure an important development. Dr. Marga has recently had training with Dr. Corrine Becker in France, who has been doing this surgery for many years. Unfortunately for all of us, Dr. Becker has published very little about her results. The main study we have available is of very few patients (25, I believe), selected by her, not randomly. Longer term studies, or studies that look specifically at long-term side effects, simply aren't there. Dr. Frank DellaCroce, who heads up the CRBS in New Orleans, tells us they will be doing research in conjunction with offering this surgery, but for now it's definitely experimental.

As the paragraph above puts it, "patients relate a decrease:" in other words, there are no studies, only anecdotal reports from some patients, which doesn't tell us anything about what percentage of patients have had a decrease, much less how much or for how long, or what other problems may develop. In other words, there are no studies substantiating this improvement.

One of the bigger issues still to be studied long-term is the development of leg, abdominal, or genital lymphedema as a result of moving lymph nodes from the groin. In the paragraph above they state that the nodes are transferred from a "low-risk node bed," but it is definitely not a "no-risk" node bed. In fact, a recent study by Dr. Anthony Stanton in the UK ("Lymphatic drainage in the muscle and subcutis of the arm after breast cancer treatment") indicates that a very high percentage of women who develop arm lymphedema after bc treatment have a lymph system that was already operating at peak volume before their surgery. They had no reserve in their system for the extra stress put on it by damage to lymph nodes and vessels. In other words, it may well be that those of us with arm lymphedema were at special risk due to a built-in low level of capacity of our lymph system. In that case, a "low-risk node bed" may, for us, actually present a much higher risk, and with node transfer we may end up trading some arm relief for leg or truncal lymphedema.

For what it's worth, those are my concerns, and I sure hope Dr. DellaCroce's new studies will eventually give us answers. For now, though, this type of surgery might best be considered for those women whose lymphedema is seriously advanced and unresponsive to treatment by converntional therapy alone. I'm excited, though, that they'll be studying and publishing the surgery outcomes -- I think we'll be able to learn a lot about the lymph system by analyzing the results.

Still, I wish it were a complete cure!
<Sigh!>
B4
SandyK

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Re:Lymphedema - Saturday, June 27, 2009 3:35 PM
I agree.  They are planning a double blind study of 100 women and I'm sure many will be anxiously anticipating the study outcome.
Dx 5/22/07 7mm IDC, stage 1
ER/PR+ Her2-/BRCA 1/2 -
BM/Stage I DIEP in Torrance, CA
PS refused to address complication, multiple issues
Beautiful results now thanks to Dr. DellaCroce in New Orleans

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