What are the chances of developing lymphodema?

Hi EbonyB,

There's a wealth of information on the main Breastcancer.org site on Lymphedema, including information on How Lymphedema Happens, Lymphedema Risk Factors, and Reducing Risk of Lymphedema and Lymphedema Flare-Ups.

Hope this helps!

--The Mods

EbonyB, no one can give you exact risk statistics as there is no single defiinition of lymphedema. Carol who posts on this site has written an amazing educational document, and the risk portion was extracted and posted on lymphademablog:

http://www.lymphedemablog.com/2012/09/08/the-risk-of-breast-cancer-related-lymphedema-over-time/

If you go on that page, you'll see the ranges in the literature. Know that few people look for it, and without a diagnostic criteria it's going to vary.

Jane Armer PhD has followed 250 women for over 8 years with different methods of measurement: a perometer (sensitive laser imaging), arm measurements, symptom checklist--and depending on which method she uses, the prevlance varies up to 91%, but the average is in the 40% range.

Certainly SNB decreases risk, but risk factors are any surgery in "the quadrant"--the arm/breast/trunk/back, radiation, chemo, being overweight and genetic predispotion, as well as seroma and some other risk factors.

Breast lymphedema has increased with SNB.

Here's how to find a qualified LE therapist:

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

And information on breast LE:

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

Please let us know if you have any more questions. 

Kira

Ebony, from the document I wrote that Kira mentioned (where BCRL means breast cancer-related LE):

Most women developing BCRL will do so within three years after breast cancer diagnosis. Survivors not developing near-term BCRL retain a small lifetime risk. Norman et al (2009) found the five-year cumulative incidence of BCRL was 42%. Of the affected women, 80% developed lymphedema within two years and 89% within three years (Norman 2010). Petrek followed 263 patients after mastectomy and complete axillary dissection. At 20 years after treatment, 49% reported lymphedema. Of those, 77% noted onset within three years after surgery, and the remaining women developed arm swelling at a rate of almost 1% per year (Petrek 2001). 

So, the Petrek and Norman studies suggest that after 3 years, the risk is low, but it does not go away. Petrek's study had only women with full axillary node dissection, so it's hard to generalize to those of us who had 'just' SNB.  Anecdotally, I had SNB (5 nodes) and yup...here it is.  LE greeted me within six months of the surgery.

Carol 

Ebony- Just wanted to say I understand your frustration with the lack of education.  My BS said since I had SNB I didn't need to worry about LE or take any precautions.  I felt like sending her a copy of my dx!  And if it weren't for Carol, Kira and Binney I'm not sure I would have known enough to go get myself evaluated as early as I did.  Since mine was caught early I only have to wear the compression garments when I'm doing something strenuous with my arms.  You may have to do the same for tennis.  They used to say we shouldn't work out our arms but now they're saying it's a good thing if it's done right and precautions are taken.