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May 19, 2014 09:53AM
Carol - my LE PT has a patient who had the LVA for her leg too (after an accident, not BC). This patient had noticable improvement and relief, but with gravity, LE is difficult enough to treat, especially in the legs.
My surgeon asked me to keep a log from pre-op on and if I notice any significant changes to note them in a timeline. I've been emailing him periodically. He asked this because they are compiling the results to have a better record of statistics. He is working with 2 other surgeons - not at the U of Iowa, but elsewhere in the US (I did not ask who), so they can create a uniform platform and was going to reach out to other surgeon to have a cumulative record. He wants to extend follow-ups, to keep track of long term progress. That is encouraging!!!!
One Dr has to take the lead on this, since there are not many in this country, to get everyone on the same page. Hopefully it is truely in the works and helps get the word out about LE.
I was discouraged most, that thru the entire BMX process, I was not told of the risks of LE. I know the most important part is to get the cancer out, and the possible risk of LE would not have you proceed differently. I read about it in my "cancer bible", so when I noticed the 1st signs, I got right in to see my surgeon and into PT... you all know the rest!!
I did ask BS when I went to see him, why my chart or the nurses board in my room post BMX, did not include no blood pressure or blood draws on the arm they had removed 24 nodes from!!!! Everyone that was done during my stay was on that arm as it was most convenient when they walked in the door. Never got a straight answer for that. Found out after LE was found - don't let anyone do anything on that arm!!!!!
The woman who fit me for garments, who's been doing it for 23+ years is also annoyed that it isn't explained more, so people do know what to watch for. The faster you get to treating it, and knowing what to avoid, there is a better chance to keep it in control.
It's difficult, because you are healing from major surgery and can't know what is surgical swelling or symptoms of LE!!! It is one big circle...if this person said this, then maybe it woudn't have been too late... it is what it is. Too late to change anything now, but we can speak up to our Dr's so maybe they include it in the BC pre-op clinics.
4/1/2013, IDC, Right, 2cm, Stage IIB, Grade 2, 1/24 nodes, ER+/PR+, HER2-
4/24/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right)
11/6/2013 Reconstruction (right)
1/30/2014 Prophylactic ovary removal
2/26/2015 Arimidex (anastrozole)