precautions for prophylactic side?

dancetrancer

Hi all,

I know you can develop LE on the prophylactic side of a mastectomy.  What I'm wondering is does anyone know what the % risk is?  Do any of the national groups recommend you follow precautions on this prophy side as well?

I ask because I am about to have some more tests and surgery...not sure if I should insist on all blood draws, BP, etc. being done on the legs/feet (I'm bilat MX, SNB one side).   If I am going to do this, I would like to go into my doc's office(s) armed with research studies or organizational opinions that say this is the standard of care.  I have read that many have had difficulty getting their healthcare provider to listen/respect the precautions for those at bilateral risk. 

Binney4

Dancetrancer, hello!

I don't know if there are any percentage figures on lymphedema risk following prophylactic mastectomy, with or without recon.  Presumably it's low, but of course if it happens to you it's 100%.

The National Lymphedema Network Risk Reduction Position Paper is here:
http://www.lymphnet.org/pdfDocs/nlnriskreduction.pdf
However low your risk might be, it isn't zero, so their Paper applies.

That said, though, it's up to you what precautions you're want to take. Some women choose to use their prophy side because the risk is lower, particularly if it's not their dominant arm. (Lymphedema rots in either arm, but in practical terms it's harder to handle on the dominant side.) Another reason to use the prophy-side arm would be if you have a history of blood clots, in which case you might not want to use your leg for an IV.

Hopefully others will be along to add information. Whatever you choose to do, I'm looking forward with you smooth sailing and quick recovery -- and no "swell" days ever!
Binney