Question

Diana,Good that you are hormone receptive--expect to get tamoxifen or an AI for five years. Good that you are grade 2. The current thinking is that number of nodes involved is not as much a prognostic sign as once thought. You don't say how many rounds of chemo you had--did you have 8? I will be cheering for you!

Getting a 50% response is pretty good for ER/PR+.  Unfortunately I had no response.  And I totally understand what it's like to find out more lymph nodes were involved.  We thought I had 3, maybe 4 involved.  Ended up 14 out of 17.  Pretty disappointing news.  But that's what the lymph nodes are there for so they did their job for us.

I'm guessing your onc probably won't do more chemo unless you insist.  I had a trial onc and my regular onc.  It was the trial onc that pushed the idea that I needed to do more chemo after rads.  She felt with the no response, BRCA 2 and grade 3 that it would be prudent.  My regular onc didn't agree at first.  My scans were clear and no symptoms so he felt it was just a shot in the dark to do more chemo when there was a possibility that there were no cancer cells to kill.  After he thought about it and did some research he changed his mind because he found research that said the platinum chemos worked well against BRCA cancers. 

Bottom line is that I was supposed to do 12 weekly rounds of low dose carboplatin.  Three weeks into the chemo and we started seeing my blood counts drop.  I made it through 5 rounds before I got a cold that turned into a nasty sinus infection with my low white counts (even neupogen wasn't bringing them back up).  Other than my bad counts, I had no SEs to speak of.  Very slight nausea but nothing compared to the regular chemo.

Hi again Diana,

I have been on Tamoxifen for about a year and a half now with no super serious se's, although I've been having bad hip joint pain lately.  Hard to tell if it's from that or just my 49 year old body getting some arthritis.  I'm doing OK most days, but still in somewhat of a funk as of late.  Not wanting to get up and get going in the morning.  Sleep is so nice. But I used to be SUPER active, working out almost every day, etc.  So somehow someway I need to find that in me again so I can find a way to move on.

Feel free to PM me anytime.

Sharon

I had 4 rounds of DD AC and was supposed to get 4 rounds of DD taxol, but was allergic, so switched to Taxotere and Herceptin before surgery.  I had a good response to the chemo, but had two small pieces of cancer that they suspected were from lymph nodes, but no lymph nodes despite having a Level two ALND.  I asked onc about it and she said my lymph nodes were probably in another area and if there was any cancer in them the radiation would take care of it.  So I feel pretty unsure and scared about the state of my lymph nodes.  The BS said the chemo probably destroyed the lymph nodes and I just didn't have any.  Another doc said the lymph nodes might have been destroyed by the high doses of steroids I was on from the allergic reaction to taxol.  Who knows, but I definitely feel the same way about being scared about positive lymph nodes, especially if they are still in there after surgery.  I don't think the onc realizes she made me more nervous than I was before the surgery.  Not sure how large my biggest tumor was before chemo, MRI said 4.5 cms, but the docs were measuring it larger.  MRI didn't show it at all before sx, but the pathology report still found it and it was 1.2 cms.  Good luck and I am very interested in what you'll be doing as well.  I am also ER+ and also will start Tamoxifen in a few weeks.  I am only 40% positive, not sure if that's considered a lot or not.  Also, my tumor was grade 3.

Diana - I had chemo (TCH x6) before surgery with an excellent response. The tumor was difficult to even feel in my breast after chemo & prior to surgery.  However, they discovered  micromets in 3 nodes and my onc recommended 12 rounds of Navelbein after radiation.  I followed his recommendation without hesitation.  As someone mentioned, Rads should take care of the cancer in the nodes but radiation could not effect any cells that might have escaped to the rest of your body.

Good luck & please let us know what the doc recommends!!