Topic: Software to predict LE

Forum: Lymphedema — Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Sep 8, 2011 05:56PM - edited Sep 8, 2011 06:08PM by kira

Posted on: Sep 8, 2011 05:56PM - edited Sep 8, 2011 06:08PM by kira

kira wrote:

Found this on Medscape, I'll link the arm volume calculator:Software Predicts Lymphedema Risk After Axillary Dissection
Tool for Deciding About Surgery?

Nick Mulcahy

September 7, 2011 - Newly developed mathematical models are at least 70% accurate in predicting the risk for lymphedema in women undergoing axillary dissection as part of their breast cancer treatment, according to Brazilian researchers.

The software models, or nomograms, were developed in conjunction with the largest-ever prospective study of lymphedema occurrence, said José Bevilacqua, MD, PhD, a surgical oncologist at Hospital Sirio Libanes in Sao Paulo, Brazil. He spoke at a press conference held in advance of the 2011 Breast Cancer Symposium, being held September 8 to 10 in San Francisco, California, where the new study will be presented as a poster.

The ability to predict lymphedema is "an important step forward" that "allows us to identify patients who can be appropriately triaged for early intervention" of the condition, said Andrew Seidman, MD, from Memorial Sloan-Kettering Cancer Center in New York City, who moderated the press briefing.

Dr. Bevilacqua concurred with that assessment, but had an additional proposal: that the nomograms could be used in discussions with some patients about the "necessity" of surgery.

Dr. Seidman did not comment directly on that idea, but noted that it was "interesting" that the study "comes at a real time of transition in the management of the axilla."

"Fewer women need to undergo axillary dissection today than decades ago," Dr. Seidman said. But patients with "more extensive lymph node involvement" still need the procedure, he pointed out.

The need for axillary dissection might be influenced by the number of involved nodes and the type of treatment a patient receives, such as regional radiation, he suggested.

A number of recent trials in early breast cancer have evaluated axillary dissection. A landmark trial in early breast cancer published this year found that, in certain women with 0 to 2 positive nodes, sentinel lymph node dissection did not result in inferior survival, compared with axillary dissection.

In addition, a trial presented at the 2011 meeting of the American Society of Clinical Oncology raised questions about the need for axillary dissection in women with early breast cancer and 1 to 3 positive nodes who are treated with regional nodal irradiation.

In the prospective study by Dr. Bevilacqua and colleagues, 1054 women with breast cancer underwent axillary dissection in 2001 and 2002. The overall 5-year incidence of lymphedema in the cohort was 30.3%. This incidence was expected, reported Dr. Bevilacqua, who explained that the chronic condition affects about one third of patients worldwide who have axillary lymph node surgery.

The median follow-up was 41 months, and 66 patients were lost to follow-up, he said. The arm volume of patients was measured with a simple measuring tape immediately before and after surgery, and every 6 months thereafter.

The Models, Variables and Findings

Using mathematical software, the investigators developed 3 models to predict the risk of developing lymphedema, which was defined as a volume difference of at least 200 mL between arms at 6 months or more after surgery.

The 3 models differ in a couple of ways: the point in time that risk is assessed and the variables used.

Model 1 predicted lymphedema risk in the study population in advance of axillary dissection. The model uses variables such as age, body mass index, and the number of chemotherapy infusions in the ipsilateral arm prior to surgery.

Dr. Bevilacqua and his colleagues compared the predictions of model 1 with the actual occurrence of lymphedema in this group of women, and found a "concordance index" of 0.706.

Model 2 predicted risk up to 6 months after surgery. It uses the same predictors as the first model, along with the extent of axillary dissection and the location of the radiotherapy field. The model had a concordance index of 0.729.

Model 3 predicted risk 6 months or more after surgery. It includes the variables of the development of postoperative seroma, infection, and early edema. The model had a concordance index of 0.736.

In short, all 3 models correctly predicted that a patient would develop lymphedema roughly 7 in 10 times. Dr. Bevilacqua noted that the accuracy of the models was on par with the accuracy of mammography in detecting breast cancer.

Dr. Bevilacqua said that he and his team plan to refine the models to increase their accuracy. Currently, some of their tools are available online for free. A tool to calculate arm volume can be accessed at The models to estimate the risk for lymphedema are available during the 2011 Breast Cancer Symposium (until September 10) at

Early Intervention

The nomograms and their ability to assess risk for lymphedema raise a "bigger question," Dr. Seidman noted. "Can some form of early intervention be useful?"

A "world of lymphedema experts" believe "early intervention matters," he said. At Memorial Sloan-Kettering, a team of physical rehabilitation experts is attempting to "control the progression of lymphedema."

Methods for treating and controlling the condition include the use of compression garments, arm elevation, not carrying backpacks and purses on the affected side of the body, and moderate exercise.

Supposedly the arm volume calculator is just available for a few days:

So I did my LE risk: and if I put in that I had info on XRT (radiation), it forced me to put in an axillary dissection, but also opened a field that asked if I had a seroma. Risk=38%. If I put in that I didn't have info on XRT (radiation), it didn't open up the seroma tab, and risk was 14%. Still double what I was quoted. I think it would be a better tool if seroma was available all the time.

I'd love to see the actual study, as we all know that LE has no formal definition, so incidence varies widely, depending on how you define it. And 200ml difference is a pretty big difference, and my hand/forearm LE wouldn't make the definition.

Interesting though. Adding seroma, early swelling and infection increased the sensitivity of the model to 73%.


2011 Breast Cancer Symposium. Abstract 8. To be presented September 8, 2011.

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 9, 2011 01:03AM LindaLou53 wrote:

Thanks for the links Kira!

I used the lymphedema risk calculator with my actual facts and it predicted I had a 100% chance of developing LE in 5 years!  I had 6 rounds of chemo in the ipsilateral arm, a full axillary dissection including level III, radiation of the lymph node basin, a seroma in less than 6 months, and arm edema in less than 6 months. (my actual arm swelling occurred  8 weeks after surgery and during my second round of chemo prior to ever getting radiation)

Its interesting that if I uncheck the box for arm swelling within the first 6 months my 5 year risk drops from 100% to 64%.  And if I never developed a seroma either, the number drops to 52.  If I further remove the fact that my lymph node basin was radiated and check breast/chest radiation instead, the risk drops to 19% !

I found the 2 biggest contributors that increased risk of LE for me were radiation of the lymph node basin and early arm swelling within the first 6 months.  

Guess the cards were stacked against me more than I realized!

Life is not measured by how many breaths we take...but by the moments that take our breath away! ...I am a 14/9 yr survivor of 2 Primary BCs, 23/23 Positive Nodes (Zometa x 5 years) Started Paloma-3 Clinical Trial 4-14-14 Dx 7/14/2000, IDC, 1cm, Stage IIA, Grade 1, 2/7 nodes, ER+/PR+, HER2- Surgery 8/11/2000 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 8/30/2000 AC + T (Taxol) Radiation Therapy 2/26/2001 Breast, Lymph nodes Hormonal Therapy 5/10/2001 Dx 11/21/2005, ILC, 5cm, Stage IIIC, Grade 1, 23/23 nodes, ER+/PR-, HER2- Surgery 12/5/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 12/23/2005 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 4/7/2006 Aromasin (exemestane) Radiation Therapy 4/7/2006 Breast, Lymph nodes Dx 3/21/2014, ILC, Stage IV, mets, ER+/PR-, HER2- Hormonal Therapy 4/14/2014 Faslodex (fulvestrant)
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Sep 9, 2011 02:04AM coraleliz wrote:

I tried this but then realized it was for following "ALND". Which I did not have. I had bilateral tumors, with bilateral nodes taken. 4 on the left & 5 on the right. & RADs on both sides.  My arm volume difference was 48ml. I think this might be because I'm right handed. My risk was calculated at 13% without adding the radiation info which I was only able to add with ALND info. So I told it I had level 1 & 2 surgery plus RADS & this only increased me to 16%.This was also a 5 year risk. My BS, who didn't want to do an ALND, told me my lifetime risk with an ALND would be 30%.

But I guess comparing left & right might not do me much good with bilateral everything. I could develop bilateral LE. Pretty sure I don't have LE. The nurse at the ROs office measured my arms prior to starting RADs. I go back Monday. I'll get those numbers from her & have her remeasure. I need to get to a lympedema specialist & get measured properly, so if I notice things changing I have an accuarate baseline.

Dx 2/28/2011, IDC, Right, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 3/15/2011, IDC, Left, 1cm, Stage IIA, Grade 1, 2/4 nodes, ER+/PR+, HER2- Surgery 4/15/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right
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Sep 9, 2011 03:21AM Nordy wrote:

Well... my chances were 88%... Pretty acurate for me anyway! Thank you for all this info Kira!

Do or do not. There is no try. (Yoda!) 2 large positive nodes before neoadjuvant chemo - all nodes negative after chemo Dx 4/21/2005, IDC, 3cm, Stage IIB, Grade 3, 0/12 nodes, ER-/PR-, HER2-
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Sep 9, 2011 03:44AM cookiegal wrote:

wow...very cool stuff

Call me grumpy and self centered and whiny but

If MSK believes early intervention matters, why did they make me wait for MONTHS to see PT and LE...especially when I had the worlds most swollen breast 

I just get annoyed when these hospitals put out press releases that have no connection to the reality of being a patient there. 

You deserve a cookie!
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Sep 9, 2011 07:43AM kira wrote:

Cookie--interesting how Memorial Sloan Kettering put out a press release for an Italian article.

I was looking up stuff yesterday and found the onc at Dana Farber who strongly told me not to get enzyme testing for tamoxifen, published an article promoting it a few months before he saw me....

The most important thing is to get "buy in" from these major cancer centers to admit LE, monitor for LE and treat for LE. 

I couldn't make the model work exactly for me as I had a SNB, but was very intersted on how rads (which my rad onc told me NEVER increases LE) and my seroma (which my breast surgeon asked me how to manage...) doubled my risk.

I declined to go to the Dana Farber survivorship course this year as there is absolutely no mention of LE--just cardiac and renal stuff after treatment. I went two years ago. I'll try it next year. Last year they had a lecture on "arm dysfunction" after breast cancer....


Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 9, 2011 08:05AM cp418 wrote:

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Sep 9, 2011 01:17PM binney4 wrote:

Hmmmm. Comes out to 13% for my left arm, 12% for my right. Guess I'm just really good at going for the low percentages. Maybe I should take up gambling...Undecided

Seriously, this doesn't take into account anything but "external" issues -- the things that happen to us in treating our bc. But a lot of very serious researchers consider that there may be an inborn component to our risk -- a lymph system with only a limited capacity, say. No way this chart can take that into account. It would be interesting if he included things like whether we're prone to our hands swelling when we hike even before any surgery. In other words, for this to be more accurate we need to know what indicators there may be that our lymph system is less than optimal to begin with.

This is also not taking into account previous trauma to the area, and we know from other situations (like LE in football players) that repeated trauma may play a part in developing LE. There are also other pre-conditions that have been implicated: diabetes, other vascular problems -- that are not touched on in this survey model

So, interesting, and a promising start. But if anyone tried to use this as a way of steering bc patients into special risk-reduction practices, I'd still be in the "no-worries" group, and we know that's not the case!Frown

Take-home thought, at least from my point of view: risk reduction education and referrals should be standard procedure for ALL bc patients, starting from before surgery even happens.

Dream on!Undecided

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Sep 9, 2011 08:48PM Kathy044 wrote:

Missed this one first time round. I heard about this in an OncologySTAT email from Elsevier Global Medical News today.Here's the Elsevier story which includes a link to download the calculator.

New Nomograms Predict Lymphedema After Axillary Lymph Node Dissection

Oh boy am I glad I refused the recommended radiation to the upper axilla.  That reduced my chances according to the calculator from 39% to 13%, not that I am counting an anything yet...I believe I have borderline lymphedema in my arm, had a scare a few months ago, then smartened up and nothing since. 

Dx 2009, ILC, Right, 1cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Surgery 10/28/2009 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 12/15/2009 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Radiation Therapy 5/1/2010 Whole breast: Breast Hormonal Therapy 6/3/2010 Arimidex (anastrozole)

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