final pathology changed after surgery

Hi Zerp,

I had a 1.3 IDC tumour but was ER and PR positive.  Do you know your HER status?  If that is positive you will find lots of information on the tripple negative boards.  The best news though is that your lymph nodes are clear. Good luck with your meeting tomorrow!

It's not unusual for the pathology to change after the surgery. Mine did.

Best of luck to you going forward.

Apologies, yes that is what i meant.

Lauriez,  I'm sitting her full of stitches after two surgeries in two weeks.  I was originally diagnosed on 12/3 of IDC they said at that time it was only 1cm, so it was going to be take out the tumor and no lymph glands were involved there was a waiting list and I couldn't have my surgery until March.  No one seemed that it was a hurry.  Then in the end of February things changed.  I was told because the tumor was against my back wall I would have to have a mastectomy. I said fine. Then was told I couldn't have reconstruction because of autoimmune problems.  I was told I wouldn't be needing Chemo etc.  Well that was all wrong.  When they opened me up my tumor had grown to 3.9 and it had metastasized to my lymph glands. So they took out ten.  Then because so many had cancer they said auxiliary node dissection.  More had cancer.  Now they say Chemo etc needs to be started buy not until an infection that started in my chest heals.  I've been on IV antibiotics every three hours for two week and then 3,000 mg three times a week for two weeks starting this week.  What I found is that these procedures have to be done if you have positive lymph glands.  I read up all I could and studied the procedure.  However, they took out all my chest muscles and all muscle under my arm etc.  No one said they were going to take out that much, but surgeon said it was necessary.  I've realized that they really don't know the whole story til they take off the breast or cut out tumor, and how many lymph glands come back positive or path reports.   It's a step by step procedure to see how many and then how aggressive they need to be.  I've read printed out copies of each procedure but it doesn't really prepare you.  Each one of us is different and we all deal with it differently.  I'm wondering the same questions that you have.   How do they know they have them all.  Since surgeries I have  lymph glands on my other side the have grown to the size of quarters.  I worry that maybe some gene moved into other glands in my body.  That is why Chemo is so important, and also MRI and continued follow ups.  What I thought was going to be a couple of months is now going to be treatment for over a year.  So all you can do is be informed ask questions, but I don't think they always have the answers.  They take it a step at a time.  I'm someone who's pathology report changed so much in just three months.  Cancer is a crap shoot. It has a mind and works in it's own way, it's finding the right mixture and right treatment so that each one of us can survive.  Good luck to you.

Hello,

I just found out yesterday, after asking questions about my "nuclear score", that in fact, my tumor was grade 2 and not grade 1. I was diagnosed in July 2009, finished chemo in Nov. 2009, and was only told NOW !! And only because I asked for my pathology reports, studied them, and asked questions!!!

My oncologist, who I like and has a good reputation, told me that the grade did not matter, that the Oncotype score was more important. He also said I should not worry, that the grade was an old way at looking at a tumor....

Has anyone gone from grade 1 to grade 2?

This is the 2nd time my pathology report changed, maybe that's why I am kind of distraught.

I was always jelous of US patients who were told everything after only initial core needly biopsy of the tumor.  Up here in Canada, they don't grade or stage or give hormone receptors until they take everything out and fine splice and dice a box full of your parts for 2 weeks.  Imagine the wait.  The lymph nodes can also throw you in the next stage, as far as I was explained.  I didn't know how many were effected exactly, like some of you, until they were all out, but also how they were effected seems to be important to grading of the cancer.  An International oncological fellow of from France, visiting and working with oncologist I was assigned to,  started my whole initial appoitment by telling me that the wrong lump was cancerous.  (I had double lumpectomy, wone was cancer, and smaller one wasn't)  I had to send him back to re-read my file to double check.  He also had something to say about the way the cellular wall of the third lymph node (the malignant node discovered positive for micro mets only after auxillary node biopsy) was broken by the cancer cells.  I also made him go back and double check (of course, not believing that he read everything right), because one would think that my surgeon would have mentioned something like that on the post-op consultation.  Bottom line, ask questions, don't leave, bring a friend with good concetration and capacity to remember things.  I personally am too "flegmatic" at these appoitments, and don't feel like probing in too much detail-- the "I want outta here syndrome".  Having said that, I will ask about that third node on my next appoitment, and for the complete pathology report.  Usually, partients are not given the report here.  We have to push for it.

Yuchick - Like many others, my experience with getting initial path reports is that things always seem to change.   The size estimate of my tumor from the biopsy was different from the actual tumor removed.   The first check of the SNB was negative, further analysis showed both SN were positive for cancer cells.  So I went from being told no chemo, to having the whole spectrum of treatment including 24-weeks of chemo!   My point?   Maybe it is best to endure the waiting for final path results rather than the roller coaster of ups and downs when you get bits and pieces along the way.  Either way...it's a drag!

Patty