New here and needing advice!

taylormd

I am so glad I found y'all!  Please give me some advice!

On Aug. 8, 2012, after a core biopsy, I received my diagnosis of DCIS in left side.  On Sept. 19, I had a mastectomy on the left side only.  One week later I received the post-op diagnosis of IDC, Stage 2a, Grade 2-3 with tumor of 2.3cm.  Six days later I had my first post-op exam w/ the surgical oncologist.  I had assumed that we would discuss the new and very different diagnosis, treatment and possibly be referred to a medical oncologist.  To my surprise, he told me that there had been an amendment to the post-op diagnosis after the path dept. put all the tissue, etc. through additional testing.  The amendment states that the diagnosis is DCIS, Stage 0 and no chemo or radiation needed.  At first I was elated, but the more I think about it, I'm not feeling so confident in the last diagnosis.  How do I know that it's the correct one?  If they tested it all again, would it come back IDC again?  Has this happened to any of you reading this?  Should I just calm down and be thankful or should I do something else?  Let me add that my surgery was done at a large and very well-known teaching hospital in Texas...It's not like I had all this done at the "corner clinic".  Thanks for any and all help!

thefuzzylemon

Hello - I have not had this situation....but I did read your post and wanted to bump it again incase it was missed by someone who could help you out.

((((hugs))))

taylormd

Thank you sooooooooooo much!  Do you think I should post my question in another forum?

jb1952

I say follow your instincts! doesn't hurt to request it be tested again or seek another opinion. better to be safe than sorry!

Lou10

What a shock that must have been to get the different diagnosis. And then to go back to your original diagnosis, which is much  better, but I wouldn't feel confident about it either.

Do you have copies of your pathology reports? At the very least, I think I'd request an explanation of how the discrepancy occurred. If the explanation made sense to me, I might stop there. If not, I'd request that my tissue be looked at with fresh eyes by another pathologist. 

redsox

Your choices boil down to asking for more explanation of the IDC finding that was withdrawn or getting a second opinion on the pathology.  I would probably want both. It is not unusual to have different opinions on the pathology because the pathologists may be looking at different slices of the tumor and may use somewhat different definitions.  Still, some pathologist called it IDC and later pathologists should look at those slices and be able to give their finding for that slice if it is not IDC.  How many pathologists looked at the specimens, who were they, what convinced them to revise the IDC finding?  Even if this was done at a very highly regarded facility, they still should give you an explanation that leaves you satisfied. 

I would expect the surgical oncologist who received the amended report to have then talked to the pathologists to raise those questions and perhaps look at the slides himself.  Just as an aside, my breast surgeon who was surprised by the pathology results consulted with the pathologist before talking to me about it, and my radiation oncologist had a general policy of always reviewing pathology slides himself even when he knew and trusted the pathologists.

New-girl

Where in Texas are you?  I am in the DFW area.  I waited a month after my bmx to get the final recommendation for no chemo or rads based on pathology and other reports.   I wish now I had seen a MO before my surgery to better understand my initial diagnosis.  I am currently seeking another BS and MO to give a second opinion on my best course of treatment.

taylormd

Thank you all so much for your replies!  I have an appt. w/ my oncology surgeon in 2 weeks and I will ask for a consultation to try to get my questions answered.  In the meantime, I will try to get my questions in order...maybe typed out.  Y'all helped me so much to see that I'm not being a worrier with no reason.  I am in Sherman, TX and had my surgery at Baylor Hospital in Dallas.

 Hope you all are having a good Tuesday!

Blessings!

Mary

Grier

Hi there!  My pathology changed too...originially I was told I had a rare and aggressive comedo form of LCIS called LIN-3.  My surgeon ordered copies of the slides (which had been outsourced to a lab in NJ) and re-ran pathology - which came back as DCIS Stage 3.  The post - BMX pathology matched that as well.  I'm not sure if you've had the same lab/pathologist running the tests, but in my case, that was exactly the issue.  I hope you get this sorted out - and don't be afraid to ask/question and push if you're not getting clear answers!  Good luck and God Bless!

Grier