Let's Talk LE Statistics

Here is the thing with Le and statistics: they do not matter if you get it. Any there is no true way to figure out if you will get it because there have not been enough considered, long term exhaustive studies on lymophatics or LE. Even the SNB stats are very limited because who is actually calling folks 2,4,or 6 years later to see if LE develops? and how many PCPs know LE when they see it?

I was where you are, and my approach was just to do the common sense precautions listed, get training with an LE PT and measurements before I have an issue, and if ( and when in my case...) it appeared I would be prepared to handle it. Some ladies have many nodes removed and never get it. Others like me lose just a few and it arrives. It appears to be a physiologically complex disease, with many treatment factors and many person physical factors involved.I personally think some of us have delicate lymphatics to begin with...maybe some existing inflammatory isssues, and simply could not take any major hit to them.

Here's a discussion that is based on a variety of studies, and the one by Shah and Vicini is actually a very well done study-of-studies (and they conclude that the apples-and-oranges problem that Kira describes makes it nearly impossible to compare studies). You can see from this discussion just how far apart the LE incidence ranges are, depending on nature of the studies:

Breast cancer treatments and BCRL risk

BCRL risk factors seem to be additive: A woman with breast conserving surgery and no other treatment has less BCRL risk than a woman receiving breast conserving surgery with axillary node dissection and radiation. Increasing the number of nodes removed also increases BCRL risk (Paskett et al)[i]. Sentinel node biopsy, which removes one to seven nodes, brings a lower risk than axillary node dissection, when 25 or more nodes might be removed.

Shah and Vicini (2011) summarized lymphedema incidence ranges with various treatments, in their BCRL-study review: [ii]

Lumpectomy alone  0-3%

Lumpectomy with SLN and breast RT  3-23%

Lumpectomy with ALND and breast RT 1-61%

Lumpectomy with regional nodal RT 9-65%

Mastectomy with SLN, no RT  3-23%

Mastectomy with ALND, no RT 30-47%

Mastectomy with regional nodal RT 58-65%

ALND with axillary RT 32%

          ALND = axillary node dissection   SLN=sentinel node   RT=radiation therapy

Most BCRL studies focus on arm lymphedema, which is readily measured once past Stage 0, or subclinical BCRL. However, many breast cancer patients develop lymphedema of the breast or trunk, with or without arm lymphedema. One year after surgery, Ronka et al (2004) found breast edema identified by clinical examination in 48% of patients with axillary clearance/ positive nodes; in 35% with axillary clearance/ negative nodes; and in 23% with sentinel node biopsy. Using ultrasound, they found subcutaneous breast edema in 69-70% of the axillary clearance node patients and 28% of the sentinel node biopsy patients.[iii] Sentinel node biopsy reduces arm lymphedema risk compared to axillary clearance, but it poses a significant risk for breast lymphedema.

References are below--

Carol

[i] Paskett ED, Naughton MJ, McCoy TP, Case LD, Abbott JM. (2007) The epidemiology of arm and hand swelling in premenopausal breast cancer survivors. Cancer Epidemiology, Biomarkers & Prevention, 16(4): 775-782.

[ii] Shah C, Vicini FA (2011) Breast cancer-related arm lymphedema: Incidence rates, diagnostic techniques, optimal management and risk reduction strategies. International Journal of Radiation Oncology·Biology·Physics, 81(4): 907-914.

[iii] Rönkä RH, Pamilo MS, von Smitten KA, Leidenius MH. (2004) Breast lymphedema after breast conserving treatment. Acta Oncologica. 43(6):551-7.

(edited because the first post did not render the incidence-range table very well, so I retyped it without table formatting)

Babette, keep in mind that you can influence your risk somewhat, as moogie said, by taking the common-sense precautions.  I earnestly wish you to have lifetime membership in what I call the '60% Club.'  Many of us feel we might have avoided triggering our LE had we only known what to avoid/what to do.  It's impossible to say if we might have avoided it altogether, but there's no downside to LE precautions such as avoiding skin breaches, sunburn, lifting heavy weights with an unconditioned arm/trunk, etc.  Keep on asking questions and reading what you can find!