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Oct 8, 2007 10:11PM
Lionessdoe, I hope this particular post on the Ask the Expert site is a VERY OLD one, because the information is definitely out of date. The idea that lymphedema can't happen in a reconstructed breast would be news to a lot of the women here who have breast lymphedema in their reconstructed breasts -- many, many women right here on this site. As for the rate of ARM lymphedema after breast cancer treatment, it's variously been found in peer reviewed studies currently to be between 25% and 33% of us BC veterans.
But catch this: a study last year by Riitta Ronka in Sweden found that 26% of women who undergo a SNB and rads can expect to develop BREAST lymphedema. That is nobody's definition of rare.
The idea of having a mastectomy to "fix" breast lymphedema is no longer standard practise for the simple reason that it does not work. In fact, the more surgery you have to the breast/chest area, the more damage to the lymph system. And the more damage, the worse the lymphedema. There's no way around that.
I can tell you this, though: the Expert on that site is very knowledgeable about breast cancer, but until rather recently she did not know much about lymphedema, and as a result sometimes offered misleading information (as in the question you quoted). She's been learning more about it lately with help from some of the advocates in the lymphedema community who were concerned about this problem, and her recent posts have been more accurate. Unfortunately, this kind of misinformation about lymphedema is not uncommon in the medical community, so getting straight answers can be difficult.
As for there being no websites to consult about this, that too is out of date. You can find information at the National Lymphedema Network at www.lymphnet.org (breast and chest lymphedema is actually called "truncal lymphedema" if you want to do a search for it). The Bellisse compression bra site also has lots of information and articles (including the study I mentioned above) on their website at www.bellisse.com And the Lymphedema discussion board here on bc.org has a wealth of women with breast lymphedema who can answer your questions and cheer you on to complete control of this crummy condition.
Unfortunately, lymphedema of either arm or breast rarely resolves, and certainly not by itself. It is a chronic condition and, like bc, it is staged. So the sooner you insist on treatment the less internal and irreparable damage will be done. Briefly, breast lymphedema is treated by specialists called lymphedema therapists (usually specially trained PTs or OTs) who combine a special, gentle massage with exercise, skin care, and compression to help you gain control of the swelling, reduce the pain, and avoid infection (which is the most serious medical aspect of lymphedema). Position Papers on Therapy and on Therapist Training are available at the National Lymphedema Network website above.
Very gentle hugs to you, lionessdoe, as you tackle this latest leg of your bc journey. Please let me know if there's any way I can help.