Need advice concerning internal mammary node-Help!

ClaudetteK

Hi all,

 I am an anxiety-filled mess.  I am 2yrs NED but a recent PET scan shows a rt internal mammary node with max SUV 2.9 , my left internal mammary node is 1.2 SUV.   My onc is not concerned and states that nothing would be done unless I show symptoms of something.  States that the area is too small (node uptake is 0.5x0.8 cm) to biopsy and that a VATS procedure is much too risky due to location of node.  Here are my stats:  Jan 2010 a neg mammo, March 2010 found a small lump while doing self-breast exam.  IDC stage 1, grade 3 ER/PR+ HER-2 neg.  Fast growing, by surgery time there was another DCIS tumor in same breast (RT) and two areas of microcalcifications on Lt breast.  Had a BMX w/expanders  SLN bx neg.  Oncotype DX 29 thus chemo TCx4 no rads needed.   My onc wanted me to do a PET scan for first three years out of BC.  First one May 2011 (8 mos post last recon surg) was completely negative nothing of intrest.  My onc moved and wrote for PET at last visit.  My PET July 2012 shows this new info.  Anyone with this situation or information regarding?? would love any input.  If this is positive i would be Stage IIIc, but onc doesn't do anything unless I have S/S of something which would lead to mets.  I hope this is nothing, but how can they find out for sure?  I've tried so hard to stay ahead of this. Sorry so long!!

ClaudetteK

Oh, and the PET stated that the SUV 2.9 rt internal mammary node was suspicious for malignancy. Left that out and it's important!

MiniMacsMom

I had an sub clav node that was biopsied via US guided fine needle biopsy at MDA that came back positive.  They had a tech in the room with the Radiologist to confirm enough sample size.  It came back positive.  (I believe though my SUV was a little high, but I can't remember).  If you can and you are uncomfortable with your onc, definately seek another opinion at a "center of excellence"  My Ro and I were talking about that today, how if I hadn't come to MDA last year, I would ABSOLUTELY have a reoccurance since the regional team I was using missed so much.  I really hope that its nothing and Lymphs can be swollen for infection, but it is definately better to be safe! 

I am stage 111c and I had chemo with great response, but I am still having rads.  They are using some special techniques here at MDA to hit the subclav and IM nodes   Big HUGS! 

You are MUCH closer to sloan kettering, but if you decide to head to MDAnderson in TX, I really really love my RO Dr. Buccholz!

ClaudetteK

thank you MiniMacsMom! whom would I contact for MDA?  I just want a pos or neg before it grows to mets due to my hx.  By the way, I am from KY, degree from UK, worked at UK medical center.  Bleed BIG BLUE!

MiniMacsMom

We moved to KY 2 years ago, so we are still learning blue and horses!  I checked with my insurance and I can self refer, so there is a contact on there webpage for a self referal.  It doesn't take long, they take some basic info, and then they call you to set you up with a patient co-ordinator who will talk you through getting your records and files transfered.  They will tell you what to send and how and then once they get certain info they will set up an appt.  Generally my visits can take just a few days, but for my first visit I was there for two weeks.  If you schedule your appt through the MDA travel agency there is NO charge for flight changes due to medical reasons, and you don't have to submit a bunch of paperwork.  If you are not allowed by your insurance to self refer, then you have to get one of your physicians to refer you.  Not sure how that process works, since I didn't have to.  My region KY onc has been super super supportive of me going to MDA, and it has made for great treatment.  I hope you Onc feels the same and helps you out.  I have been told from the very beginning that a good doctor will always support you getting a second opinion, that they won't take it personally!

 https://www2.mdanderson.org/sapp/contact/selfreferral/index.cfm?intcmp=bb_ra  I hope the link works.  Almost everyone I have met at MDA has been amazing!  Good luck and keep us updated.  I truely hope that everything comes out B9!

 I did just check my US report from my biopsy and my Lymph was larger, it was 1x1x.6 .  But they are the best for a reason, so I am sure they would be able to settle your mind either way.  When we talked about doing some treatments at home, they were fine with me getting their perscribed chemo at home but said that the only other place in the country with a comparable RO team would be sloan kettering.  So if SK is closer to you... But ultimately do what makes you the most comfortable!

jacee

Claudette...I had a rt internal mammary node that was a sentinel node. My breast surgeon was able to remove it and it was positive. So my rads were boosted to the IMN chain. You are right though. they rarely remove them. My BS said it was the first one she had ever removed. Hopefully the rads and chemo took care of anything left. My DIEP surgeon checked the area out when she was in there and said it all looked good. Hoping you get some good follow through wherever you go. Best wishes!