Lymphedema

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terri67
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Re:Lymphedema - Monday, April 20, 2009 2:23 PM
Thanks B4 and JulieS,
Yes, it does seem to be improving. It isn't as red and the pain is going down also. It does seem like it spread a little in one area, I will keep a close eye on it and go to the dr's right away if I think it is still spreading by tomorrow.

I see my Oncologist this Thursday for my 3 month, looks like I am going to have lots of questions for her.

Thanks again, Terri
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 3:31 PM
Hi, Terri,
So glad you're feeling better -- whew! When there's redness and you're trying to treat a cellulitis infection, it helps to draw around the red area with a permanent marker. That way you can be SURE when you check it whether it has spread or retreated.

When you see your oncologist it would sure be helpful to ask him for a referral to a well-trained lymphedema therapist. If there's lymphedema present s/he can diagnose and treat it, and if not s/he can do baseline arm measurements for future reference, give you personalized risk reduction tips, and fit you for a compression sleeve and glove for exercising, travel, or any strenuous activity. Just make sure any therapist you see is thoroughly trained in lymphedema management. Here's a web page with helps for finding one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Hope you're soon seeing this stupid infection in your rearview mirror!
B4

DJW
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Re:Lymphedema - Monday, April 20, 2009 5:01 PM
I'm so glad you called and it was caught so quickly. Hang in there, girlfriend!
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)

Theresa R
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Re:Lymphedema - Tuesday, April 21, 2009 7:43 PM
Wow - I'm on my way to the Caribbean on Thursday to a tiny island with no medical facilities.  Only 80 people live on this island. I'll be out in the sun for almost two weeks, and the way I see it, there are all kinds of risk factors for lymphedema.

Flying, snorkeling among coral, sunburn, bug bites.........

So, I did the responsible thing and called my oncologist to ask for an antibiotic to take with me just in case.

Well, I just got the message that "Dr. Patel does not feel that you have a risk for lymphedema, and therefore we won't be calling in a prescription"  WHAT????  I couldn't believe my ears!  Yes, I only had a sentinel node biopsy, but I did have 5 nodes removed!

Any suggestions on how to handle this?  I'll probably call the surgeon tomorrow, and if she won't prescribe something, I'll try the plastic surgeon (though it's been quite a while since I've been his patient)

I truly couldn't believe it!

Theresa
Diagnosed 3/24/2006, Tubular carcinoma, stage 1, grade 1, ER/PR pos, HER2 Neg Lumpectomy 4/2006. MRI found another lump. Another Tubular,stage 1. Bilateral mast 5/5/2006. Exchange surgery,ooph August 2006.Arimidex Oncotype-15
Carepage:TheresaRasmussen

Butterfly
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Re:Lymphedema - Tuesday, April 21, 2009 10:12 PM
I can believe it Theresa!!  Sometimes these doctors scare me, at least mine do.  I was never told anything about lymphdema and when I mentioned it to my oncologist he acted like I was crazy or something.  Sometimes I feel like my doctors and it seems your's  are as smart as a "box of rocks" when it comes to all the side effects of cancer, surgery, chemo, and radiation.  I mean what the heck!!  If it wasn't for this site, I would be just like them, knowledable as a box of rocks!!  I hope you get your prescription!!
Take care!!

Roxanne
<message edited by Butterfly on Tuesday, April 21, 2009 10:14 PM>

terri67
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Re:Lymphedema - Wednesday, April 22, 2009 7:01 AM
Hi Theresa,  I would definitely keep trying for the antibiotics,after my last episode I was just thinking How I would never travel without taking antibiotics with me now.
 
Keep trying and Have A great Trip sounds so fun !!!!
                               Terri
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

.MARIANNE
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Re:Lymphedema - Wednesday, April 22, 2009 4:11 PM

Theresa, I call my regular Dr. when I am going somewhere like Mexico when you might end up with severe diarrhea. The water or the food might be tainted and it is better to have it with you. I'll bet your reg. Dr. will phone one in.





Marianne, TX-age 64
Mammy,Jan2009-lump in rt.breast
Lumpectomy-Feb 17,2009
Diag.,IDC,stage2,grade3,triple ng.HER (1+)
chemo starts 4/6/09 (CYTOXAN &TAXOTERA,W/Neulasta
Rad after chemo


DJW
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Re:Lymphedema - Tuesday, May 26, 2009 9:36 PM
I wanted to alert Ruthie and the rest of you that BlueSue has posted a new thread about lymphodema on the Persistent Side Effects forum. Hope some of you will go there and will be able to answer her questions.
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)

Elaine10066
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Re:Lymphedema - Wednesday, May 27, 2009 12:59 AM
Hi Blues Sue
I know this is a late response, but I kept a journal and went thru it to make sure I had my facts correct.  For me, lymphedema came as a result of radiation burn.  I had a lumpectomy in the fall of 2004 and started radiation during the Holidays of that year, ending 33 treatments by Feb. 2005.  I never had the 33rd treatment due to burning and swelling of the treated breast, at the time I remember showing up for it, but unable to raise my arm.  The radiologist Dr. gave me scripts for inflammation and antibiotics and sent me home, with a pat on the back: “to fight another day”.  Late that evening or early the following morning, I awoke with a feeling of a “2 ton truck” upon my chest and made up my mind that I was visiting my surgeon that morning.  I’m normally not a pushy person, but I knew where I was going, without an appt. and when I did show up at the office first thing, I was treated with sincerity and compassion.  The Dr. immediately started draining fluid from the breast with certain relief coming back to me.  Upon leaving the office, I finally realized what I must look like with sweat pants and a bulky sweatshirt jacket and no bra.  Across the hall was physical therapy and a “Missy’s Closet” for bras. Knowing that I didn’t want to put on another “athletic” bra, I went in hoping for something comfortable and explained my predicament.  That was the first time I had heard about lymphedema! The therapist explained, that although I certainly had radiation burns, it seemed apparent to her one side of my trunk was swollen, as well as my arm from the elbow up.  I was measured on arms, legs and sides of my trunk with a noticeable increase on my right side.   I was fitted with a “Belize” bra, (a long line bra, soft textured, zip up the front with Velcro adjusted straps for snugness. I followed up with appx. 6 appts. of massage therapy. As it was explained to me, the purpose of the Belize and massage is to push those fluids of the lymph on down the right path and eventually on out with natural waste.   I also was fitted with a “Jobst” elastic sleeve to wear when flying.
Please don’t become discouraged, I know it all seems frustrating and sometimes impossible, as helpful as that “Belize bra” is, I found I could wear it while sleeping, didn’t have to wear it as regular daily bra.  I have since taken up golf again and remember the first day I went out to “hit balls”, I suited up in the Belize and sleeve, ready to take the consequence of my choice to play golf and it’s alright, I only play nine holes and not that often, just thrilled that I can!
Another reminder; don’t have blood drawn or blood pressure taken from your affected arm and or side. We have to be careful about manicures and pedicure; no cutting of skin, it could start an infection in the lymph nodes.  No heavy lifting and really use those garden gloves, even to pull weeds.
I hope this is of some help to you, Blues Sue, yes, occasionally, it has returned, not as bad as the first time, but now I know the drill and don’t hesitate to get help.
Please don’t hesitate to contact me if I can answer any questions.
Good wishes
Elaine
 
dx 10/04 59yrs
lumpectomy right breast 11/04
dcis, idc, 3 nodes +
33 rads 2/05
lympedemia
tamoxifin 4/05

Willietattoos
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Re:Lymphedema - Tuesday, June 16, 2009 5:57 PM
Has anyone had, or heard of, lymphedema developing in a patient related only to Radiation Therapy, without previous lymph node excision? My Onc. Nurse mentioned this as a risk and recommended compression sleeve while flying, but the MD didn't seem very concerned about this risk. Thanks, in advance.
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


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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