lymphedema after snb

Sarah, Jean O'Toole is the head PT of the lymphedema program at MGH--I've unfortunately had a bad experience with someone in Waltham--and at the main MGH they measure pre and post op with the perometer (sensitive laser measurements for arms) and if they notice any increase, they refer to Jean O'Toole for treatment.

http://www.mghphysicaltherapy.org/provider_info.htm

When I had issues with the Waltham PT, Jean offered to treat me herself, but ulitmately found me someone perfectly good, near my house.

I get very upset with Dana Farber where the the head of PT refuses to admit that any Brigham and Women's patient could get LE (guess they forgot about Elizabeth Edwards) and wants to make it a "sentinel event"--reportable medical error, while over at MGH they proactive measure for LE on all patients.

Kira

I am also worried that I have lumphedema after my snb and only 2 nodes removed.  And in 2 days I'm going to have an ALND!  

I mentioned to both the surgeon and the breast care nurse that my arm still hurts from the first surgery, but neither one said much ... the nurse said the tightness when I straighten my arm might never go away.  But my muscle (in my upper arm, outside) hurts most of the time.  Nothing seems to be swollen, though -- or it may be very slightly swollen, but then it's only been 5 weeks since the lump/snb, and my little booklet says swelling from surgery can last 12 weeks.

For a time I thought I was just tensing that muscle because I'm so paranoid about getting lymphedema!  Now I'm not sure.  

Oh, and mine is my non-dominant side.  Thank God for small favors.  

Kira, Claire, Binney, and Sarah - I finally received a return phone call from my BS. He agreed that it sounded like it could be cellulitis ... He agreed that I should go to the ER, instead of waiting to see him tomorrow at JH ... I just hope they know how to treat my condition in the ER (just a little worried) ... I wish all of you could be with me in the ER and tell the doctors that it's probably cellulitis ... I trust all of you more than some doctors ... thank you for all the advice    

HUGS to all!

Trinity

Etherize--the pain you're describing sounds a lot like "cording"--thrombosed lymphatic vessels--very very common and a risk factor for lymphedema. It can be treated by a lymphedema therapist, and it would be a good idea to connect with one:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Here's a link to Axillary Web Syndrome--another name for cording

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

Have a peak, and see if sounds familiar.

I would never want to add confusion to your care or suggest medical advise, but fyi:

Earlier this year, the breast cancer world was rocked by  the Guiliano study that showed that for women with only 1 or 2 positive nodes, there was no survival benefit with ALND vs. SNB and systemic therapy as indicated by oncologist--http://jama.ama-assn.org/content/305/6/569

Axillary Dissection vs No Axillary Dissection in Women With Invasive Breast Cancer and Sentinel Node Metastasis
A Randomized Clinical Trial

Armando E. Giuliano, MD;
Kelly K. Hunt, MD;
Karla V. Ballman, PhD;
Peter D. Beitsch, MD;
Pat W. Whitworth, MD;
Peter W. Blumencranz, MD;
A. Marilyn Leitch, MD;
Sukamal Saha, MD;
Linda M. McCall, MS;
Monica Morrow, MD

[+] Author Affiliations

Author Affiliations: John Wayne Cancer Institute at Saint John's Health Center, Santa Monica, California (Dr Giuliano); M. D. Anderson Cancer Center, Houston, Texas (Dr Hunt); Mayo Clinic Rochester, Rochester, Minnesota (Dr Ballman); Dallas Surgical Group, Dallas, Texas (Dr Beitsch); Nashville Breast Center, Nashville, Tennessee (Dr Whitworth); Morton Plant Hospital, Clearwater, Florida (Dr Blumencranz); University of Texas Southwestern Medical Center, Dallas (Dr Leitch); McLaren Regional Medical Center, Michigan State University, Flint (Dr Saha); American College of Surgeons Oncology Group, Durham, North Carolina (Ms McCall); and Memorial Sloan-Kettering Cancer Center, New York, New York (Dr Morrow).

Abstract

Context Sentinel lymph node dissection (SLND) accurately identifies nodal metastasis of early breast cancer, but it is not clear whether further nodal dissection affects survival.

Objective To determine the effects of complete axillary lymph node dissection (ALND) on survival of patients with sentinel lymph node (SLN) metastasis of breast cancer.

Design, Setting, and Patients The American College of Surgeons Oncology Group Z0011 trial, a phase 3 noninferiority trial conducted at 115 sites and enrolling patients from May 1999 to December 2004. Patients were women with clinical T1-T2 invasive breast cancer, no palpable adenopathy, and 1 to 2 SLNs containing metastases identified by frozen section, touch preparation, or hematoxylin-eosin staining on permanent section. Targeted enrollment was 1900 women with final analysis after 500 deaths, but the trial closed early because mortality rate was lower than expected.

Interventions All patients underwent lumpectomy and tangential whole-breast irradiation. Those with SLN metastases identified by SLND were randomized to undergo ALND or no further axillary treatment. Those randomized to ALND underwent dissection of 10 or more nodes. Systemic therapy was at the discretion of the treating physician.

Main Outcome Measures Overall survival was the primary end point, with a noninferiority margin of a 1-sided hazard ratio of less than 1.3 indicating that SLND alone is noninferior to ALND. Disease-free survival was a secondary end point.

Results Clinical and tumor characteristics were similar between 445 patients randomized to ALND and 446 randomized to SLND alone. However, the median number of nodes removed was 17 with ALND and 2 with SLND alone. At a median follow-up of 6.3 years (last follow-up, March 4, 2010), 5-year overall survival was 91.8% (95% confidence interval [CI], 89.1%-94.5%) with ALND and 92.5% (95% CI, 90.0%-95.1%) with SLND alone; 5-year disease-free survival was 82.2% (95% CI, 78.3%-86.3%) with ALND and 83.9% (95% CI, 80.2%-87.9%) with SLND alone. The hazard ratio for treatment-related overall survival was 0.79 (90% CI, 0.56-1.11) without adjustment and 0.87 (90% CI, 0.62-1.23) after adjusting for age and adjuvant therapy.

Conclusion Among patients with limited SLN metastatic breast cancer treated with breast conservation and systemic therapy, the use of SLND alone compared with ALND did not result in inferior survival.

One more thing: post surgically, it's been advised that you don't raise your arm above shoulder height for about 10-14 days--none of that climbing the wall stuff

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

Peri-operative and Post-operative Management:

--Handle the tissues gently during surgery: Janice Cormier, M.D., NLN lecture 2010, Physicians' Intensive

Lecture slide: Critical Surgical Technique 1) Gentle handling of tissues, 2) Orientation of incisions (extremities) and 3) Hemostatic control at time of surgery

--Treat seromas promptly: from San Antonio Breast Conference 2010, "Seroma usually leads to prolonged wound healing, tissue inflammation and subsequent fibrosis and necrosis. It has been hypothesized that seroma formation is one of the main risk factors for post-breast cancer lymphedema." Seroma Formation Is Associated with Lymphedema-Related Symptoms.
http://www.abstracts2view.com/sabcs10/view.php?nu=SABCS10L_478

---Consider limiting stretch on the axillary area for 10-14 days post-operatively, as lymphatics have limited time to regenerate: NLN Conference Lecture, 2010, Jodi Winicour PT

From Foldi Textbook of Lymphology: Lymphatic regeneration occurs as the stumps of the afferent or efferent collectors of a removed node connect as the result of proliferation of the endothelium at the terminal portion of the damaged vessel. Regeneration of superficial vessels in dogs takes 4 days, and deep vessels in 8 days.

Have your patients limit their arm movement to shoulder height for the first 10-14 days post-op-to allow the efferent and afferent vessels to connect during the limited time of lymphatic regeneration.

Systematic review of early vs. delayed exercise has shown delayed exercise decreases seroma formation: http://www.ncbi.nlm.nih.gov/pubmed/15830140

A study in 2008, published in Physiotherapy, showed higher risk of development of lymphedema in women who had axillary node dissection and performed early vs. delayed exercise: http://www.lymphoedemaleeds.co.uk/Pages/Research.aspx

Sorry for the length of this. Please let us know how you're doing.

Kira

What a recurring theme of being told 'no risk/low risk' by the BS!

My node removal was a topic I discussed at length with my BS, as my BMX was prophy, and it was not abundantly clear that I needed node dissection.  Pathologists were in disagreement on one lesion; all agreed the others were clear but I had abundant LCIS and bodacious family history, therefore the prophy.

I asked BS to help me weigh the choices of node/no node dissection, which she said was the only way to be absolutely sure, while in surgery, that no other nodes farther afield needed to be taken. I specifically asked about LE risk. I was the one who brought it up (that's a bit mortifying in itself). The answer was: really no risk, no need for arm precautions, etc. 

Well, 'sentinel' turned into 5 nodes, even though the final path report finds zip, zero, nada malignancies, so all were clear.  So I took this added risk for zero, zip, nada. (Binney's story makes me realize that just having the BMX/recon put me at risk, and of course, THAT never came up in conversation!)

I'm at the moment patiently waiting for an eval appointment at an LE center a bit distant from me, as I have symptoms of truncal. Meantime, today I was wondering something, and it's an interesting question for all of you.  If you HAD had a realistic assessment of your LE risk in advance, would it have changed any aspect of your treatment choices? 

I'm pretty sure I would have gone for the prophy regardless, but it sure changes my perspective on doing prophy to put the family disease finally behind me.  Feels like it's still looking at me from over my shoulder!

I have learned SO MUCH from the LE topics here, and from all the resources that Kira, Binney and the rest of you have pointed me to.  It's clear you invest a large portion of your personal time watching for comments and questions where you can help. Give YOURSELVES gentle hugs, because your gifts of time and knowledge are, as they say in the ad, priceless.

Carol

Kira - you are a font of information! Thank you for everything. Yes, Nancy's well-trained in LE therapy and gives talks and such consistently. Been treating women w/LE (and seeking to prevent LE w/precautions including supervised physiotherapy) for going on 20 years, I think. Like I said, in the "old days" when I was treated a decade ago, she was VERY into precautions, today, not so much. Controversy in the field indeed. I'll see how it goes - she did right by me years ago, is trained and experienced and I just like her as a person (which should count for SOMETHING, right?).

My SIL and BIL live in Natick and my MIL in Wellesley - feels very country out there to me, and on a glorious day like today it IS just gorgous.

Thanks again for all the info. - I am struck every day by the wealth of information and the abundance of kindness on these boards!

Sarah 

Carol--you nailed it with the delayed exercise: I was told to wall walk immediately--actually I wasn't really given post op instructions, but had range of motion exercises from a PT and did them, and when I got all the cording, did see a LE PT who had me do MORE!

So, I have a lot of regrets: going with the breast surgeon who wasn't listening to me--and rushing to surgery because my daughter was getting married in three weeks, having her ask me what to do with my axillary seroma and telling her not to aspirate it, not knowing LE risk reductions and going to a beach with tons of axillary web on a hot day and getting bug bites. But, I'm here to complain about it....Could I have dodged the LE bullet? Who knows? But there was a series of bad events and ignorance that set me up. And still ticks me off. If I knew then, what I know now, I'd have behaved differently --no overhead stretches, no need to google "cords in the armpit after breast surgery" and I'd have gone with a different surgeon, and not gone to the LE PT who gave me the initial bad advice. Oh well, it's now, not then. 

Sarah--my younger daughter lives in Coolidge Corner, and I really like that neighborhood---Natick is like the country. I have a LE therapist who I adore, and I follow her advice closely. These therapeutic relationships are so important. The move to debunk risk reductions is to try and llift restrictions and fear from us, and we just have to figure out where the appropriate level of risk reduction is.

 There is a great study by AW Stanton, where he showed that women who developed LE didn't have robust lymphatic function in their "good" arm--as Marga Massey the plastic surgeon has said, the women who don't develop LE have a four lane highway of drainage, while those who do, have a small road.

I think the women on these boards are so kind to each other--and we've learned so much from each other.

Kira

The misinformation being handed out under the guise of quality medical advice is simply jaw-dropping.  Women should not have to find correct advice using the 'pssst...have you heard about lymphedema precautions?' method.' This is all so discouraging.  I find myself wondering what risky things I did during my first two months post-op, before suspicions of LE sent me here, searching for answers.  If every BS's nurse would simply tell patients to take time to investigage the LE threads on BC.org --such a simple gesture-- women would get a whole lot more valuable information than any 62-second LE conversation they might sneak into the office visit with the surgeon.   

Hi Everyone

I had a Simple Bilateral mastectomies and NO NODE's involved... and I ended up with Level 1-2 Truncal Lymphedema on my cancer side and my Prophy side. My Prophy Arm side will always be at risk. Cant imagine the what IF's IF i had had a SNB.

I did not know about this b/f surgery... and everyone assumes I have had Nodes removed or Rads... but NO... I just have really bad luck, 2 eight inch incisions and a wicked amount of scar tissue.  I think this may need to be re-thought as a risk factor.

Altho I am left handed, my right is my powerhouse. And i am not liking kicking butt the way I used to. 

Please tell me I can use my new Echo Weed Wacker that I waited a long time for!

Trinity, hope you are ok and getting checked

Blessings

brazos

Add me to the list that was not told anything about LE by the BS.  I already had cording before sx, so went to an LE therapist before and was given some stretches to do, but that was basically it.  That and being told no blood draws or blood pressures in the cancer side.  I don't think any more precautions would have done any thing though since I think the rads simulation and holding my arm above my head so long was what triggered it for me.  And as someone said, the cancer tx has to come first.  Looking back, I think I must have misunderstood, but I thought my BS told me she had only ever had one patient develop LE and that patient was obese, so at a higher risk than me.  I am sure she has had more than that. 

Claire, that's a whole lot of questions, all good ones! Let's see if I can sort through them.

"Cording" is actually called Axillary Web Syndrome (AWS). It's a complication of surgery that many believe is a risk factor for developing LE (so are post-surgical infections and seromas). Here's information about it:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

LE does involve swelling. But in its earliest stage (Stage 0) there can be excess lymph fluid in the tissues (as much as 30% more than is normal) that has not yet led to visible or measurable swelling. Also, early Stage I lymphedema can appear to "come and go" as swelling becomes visible but then resolves, only to swell again later.

LE doesn't always involve infection -- you're right that infection is a complication of LE. Infection with LE is very serious, as it can spread and become systemic rapidly. Here's information about LE-related medical emergencies:
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

Infection is a real risk with LE because stagnant lymph fluid is both warm and protein-rich, which makes it the perfect bacteria incubator. So ANY crack in the skin can introduce bacteria that will grow like wildfire -- even micro-cracks from dry skin. Sun burn breaks down the skin's protection and can result in rapidly-spreading infection when LE is present.

You might find this page about LE risk reduction helpful, because it gives a simpler formula for understanding how to lower your risk: Promote and Protect.
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Information overload, huh? Sorry about that -- LE is a pretty steep learning curve!

Be well,
Binney

Clair, seeing as how you're into biology, I should tell you that not only is LE an orphaned condition, making it hard to grasp, but also the lymph system itself is to blame for all the confusion. How much sense does it make that if you're swelling from retained stagnant lymph fluid, you should drink lots of water? Or that, despite the high protein content of lymph fluid, that you should continue to eat a high-protein diet? Or that diueretics are contraindicated and can cause more swelling? Lymphedema is just plain counter-intuitive, which is part of the reason it's the one pervasive body system that has been largely unstudied throughout medical history. (That, plus the fact that most of the lymph system is invisible to the naked eye -- that sure hasn't helped to interest biologists in it historically!) When scientists finally discovered the mysterious workings of the lymph system, their theories of how it worked -- and even what direction lymph flowed through it -- were completely upside down.

So at least when we find it confusing we're part of a long and honorable tradition!

There are a few notes on the history of lymphatic science here:
http://www.stepup-speakout.org/History_of_Lymphedema.htm

Enjoy!
Binney

Carol., add me also to the list of LE after SNB.  I had only one node and got NO info on precautions or risk reduction either.  I saw a supposed "world renowned" BS and PS and neither has even wanted to take a call from me on this.  I developed LE on node side within 3 mos of BMx - am not sure exactly what might have caused it but I did have cording and lots of burning in the armpit that just wouldn't go away.  I have TEs and the node side TE has always been irritating the pit.  I kept being told it was just "nerve regeneration".  In am getting over most of the anger I feel.  At least it doesn't consume me every day but I kept blaming them, blaming myself (I'm a nurse and thought I should have know better), blaming fate! 

I am off for pre-op for my implant exchange next week and I AM NOT LETTING THEM touch either arm for IVs, blood or BP.  I can only imagine the fight I am going to have with the lab today about the need to draw blood in my foot!  I do not want to risk my supposed good arm - I also have chest swelling that comes and goes. 

I wish I could WEED WHACK a few medical professionals! 

Trinity - glad you are going to ER.  Antibiotics are needed asap! 

Trinity, thinking of you! How are you? Get better quick!
Binney