? on node removal

Cats134

I had a bilateral mastectomy with an agreed SNB on my right side on 12/19.  My BS told me and my family after surgery that he removed 4 SNs.  I was surprised when I reviewed my path report to read that 19 nodes were removed on my right side (5 were SN), and 9 from my left. 

When I told my BS that I was surprised at the number of nodes removed, he replied "me too".  

When questioned further, he told me that nodes are intertwined in the breast tissue and that the majority of my nodes that were removed were in the axillary breast tail.  He also stated that most women who have had mastectomies most likey have had nodes removed but may not be aware of it.  I have been researching this and asking other medical professionals that I've run across and I get conflicting stories. 

I'm trying to be pro active...went to a PT/Lymph Therapist for a few weeks.  Learned what to look for and how to massage swelling, but I am instructed that if I suspect lymphedema, to call my BS who will check for infection, then send me to PT.  I do have baseline measurements of both arms on file but fear that all the waiting for appointments will be too long and if I do indeed develop lymphedema, it won't be treated as quickly as it should be.

I am so frustrated with the lack of info that was given to me, and the lack of concern that is shown.  

Cats 

kira66715

Cats, the nodes are in the "tail of Spence"--I've seen this in path reports that I read at work, where a patient will have multiple nodes out in a prophy mx.

It really seems like not all pathologists report on this--as I saw a case, and the rad onc said "that's an over-zealous pathologist"--and I actually thought, no, that's a meticulous pathologist and it makes me understand why a mastectomy, without axillary surgery can increase risk of LE.

Cats, you've done the preventive work: you saw a LE therapist, you got educated and measured, and got garments, and heaven forbid, anything "swell" happens, you have a relationship established.

I do understand your frustration and the sense of lack of concern.

I developed issues early, and literally found a PT on the internet, who said she was LE trained, and had me do all the wrong things. But I was frantic. Thank goodness for Binney and this forum.

Totally agree with your surgeon that most patients don't know that there are intramammary nodes that get removed with the breast tissue.

Kira