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first update of 2009... | by vrot01
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first update of 2009...

poor v is still sleeping on my recliner... she really needs to be sitting up a bit to be comfortable... i miss my recliner... but i miss sleeping in the same bed with v more... v&i have seen the boobie doc and the breast surgeon over the past 2 days... we get new year's day off (yay!!)... then we see the oncologist tomorrow morning...


on tuesday, v had her tissue expanders expanded... we found out how they fit in her body and why they don't fit particularly well... i expected to see them get bigger as the doc added saline... but they didn't... v felt fine directly after the pump up... but the next day she felt plenty sore!! we also found out that the pain in her left arm along with the somehow newly formed and very painful tendon running from her arm pit to her elbow is known as axillary web syndrome (i'll put a full description of it at the bottom of this post)....


during our visit with the breast surgeon we picked up much more info on the syndrome and instructions on how to deal with it... many exercises for v... mainly sretching... and i get to rub the chord down a couple of times a day... its kind of creepy because it makes this crunchy sound as you rub it... and poor v squirms in pain... amazingly after just a day of exercise and the rubbing, v has considerable relief and can lift her arm with less limitation...


and the breast surgeon gave us the results of the oncotype DX genetic testing... it gives a recurrence score 0-100... low is good... v scored a 12!!! fortunately i understand statistics well (taught it in college... apply it at work daily)... and you have to understand it to wade through exactly what the score means... in the simplest terms, the score says that if v is postmenopausal (unclear since she was doing low level hormone replacement with bc pills before the cancer) that simply taking pills (tamoxifen) would give her a roughly 8% chance of recurrence.. and interestingly according to the stats... chemo makes the chance of recurrence jump to 10%... now these stats worry me since they are taken from a total population of 367... and that's not much... so its good news... but still leaves us in a very cloudy grey area in terms of chemo or no... nothing cut and dry... there are so many variables which haven't been studied... v's case is one lymph node with a micrometastases less than 1mm... the stats are taken from 1-3 affected lymph nodes that could have macromets much greater than 2mm... it will be very much a decision based on v's gut feel... with input from oncologists and her helpful husband :)


the world really needs a better medical database with all known cases entered to allow folks to look for commonalities... right now, i'm driving myself nutty reading tons of conflicting and incomplete studies on breast cancer recurrence... i even watched the technical presentation on the node positive results using the oncotype dx assay... i mean i even know what an assay is... i need a break!!!


so we meet with the first oncologist tomorrow at 11:30am...


Axillary Web Syndrome, also known as "cording". It is very common after mastectomy or lumpectomy with axillary node dissection (lymph node removal). It is characterized by pain in the armpit or elbow with tautness that increases when trying to straighten the elbow or lift the arm overhead. The pain and tautness may extend into the wrist or thumb. There is often a visible tightness or a "cord" that looks like a guitar string just beneath the skin that runs from the armpit to the elbow.


Axillary web syndrome occurs when there is an interruption of the axillary lymphatics during axillary or sentinel node dissection. Axillary web syndrome seems to be unrelated to the number of lymph nodes removed or the stage of the cancer diagnosis. The syndrome usually does not begin immediately after surgery. Rather, there is a delay of a few weeks before the initial symptoms occur.


Research suggests that thombosed (clotted) lymph vessels are responsible for the cording. The vessels are inflamed and become thicker and shorter. Axillary Web Syndrome usually responds well to physical therapy treatment within six to eight visits and does not have long-term effects.

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Taken on December 15, 2008