I am panicking! Changes in diagnosis??

It sounds like you got a surprise What sort of change?

The initial imaging and biopsy may be able to suggest number of problem areas, node involvement, and tumor size, but the findings may be different when the surgical pathology report comes back. Additional DCIS or tumors might be found by surgery. The pathology report will give ER/PR/HER2 status and other info that might differ from anything found on biopsy because the biopsy is a sample of one or more hopefully-representative sites, where the surgery covers more tissue more comprehensively.

Well it changed for me. I don't know how often this happens, but I was told I had a 1.5cm tumor and no node involvement. Wrong - the tumor was 2.8cm and 1 lymph node was positive. Maybe not a radical change, but it was enough to send me over the edge because that node bought me a ticket to chemo. But, it's all good now.

Nancy

(sends reassuring comfort) i haven't statistics on how often the diagnosis changes vs. remains the same, but at this point I'd suggest keeping in mind that the people whose diagnosis did not change are far less likely to come post on the boards! Mine didn't.

As I understood it: The initial biopsy takes a small sample of the total area of concern--the one that the radiologist finds most worrisome based on the images they have available to them. I think the 'sample' taken after the official surgery is intended to be the entire area of concern (how's that for a euphemism) so the pathologist has a far more accurate idea of what's wrong. Kind of like the meteorologist's predictions on the morning news, versus what they say during the late news.

Final pathology changed my diagnosis also. Imaging prior to surgery showed no node involvement. SNB showed one node positive.

On the other hand, tumor size was estimated at 1.5 cm per MRI, final pathology showed 7 mm. Presurgery imaging (MRI) indicated a tumor w DCIS around it, final pathology showed no DCIS. It ain't over til the fat lady sings or the final pathology report is in. It seems imaging and needle biopsies provide only a limited amount of information and changes might be for the better or worse. Add that to things they don't tell us. I rather thought going into surgery they knew exactly what they would find. Afterall, presurgery I had 2 mammos, a needle biopsy and a breast MRI with contrast, but I was wrong.

Dear MarieTherese:

Please get a copy of your pathology report so that you will have more specific information.

My diagnosis changed.  I went in for a diagnostic mammogram and sonogram because I had a palpable lump that had previously been biopsied. The first biopsy of this lump, about 5 or 6 years ago, was diagnosed as fibroatenomateous hyperplasia which is a benign finding.  My gynecologist INSISTED that I have this lump re-imaged last summer because he was concerned about it.  It was large and hard.  I was complacent and not concerned because I have had so many core biopsies, excisional biopsies, and fine needle aspirations in my life.  In fact, at my previous mammo and sono, 5 months prior, I was told that I should wait a year for my next images rather than having them every 6 months, as I had been accustomed to doing.  (This was before my bc diagnosis.  I am vigilant and concerned now.) My gynecologist saved my life.  I owe him a HUGE debt of gratitude. He told me to have the tests regardless of what I was told about waiting the year for my next sono and mammo.

I had the mammo and sono and another lump that had previously been biopsied and was benign came back as being suspicious.  The palpable lump did not appear suspicious on the imaging tests. 

I had the suspicious lump biopsied and it came back malignant with ILC and LCIS.  My doctors suggested that the palpable lump be biopsied again just in case.  That lump came back benign a second time.  However, the name changed from FH to Flat Epithelial Atypia, PASH, Sclerosing Adenosis, and other benign findings.  My doctors tell me that I have "busy, extremely dense breasts". 

Since both lumps were in the same breast and since the benign findings changed on my large, palpable lump, I decided to have this lump removed along with my proven malignant lump.  The pathology report after my double lumpectomy showed that the large palpable lump that was biopsied twice and was reportedly benign both times, also was diagnosed with invasive tubular carcinoma and extensive PLCIS.  In addition, the ILC and the LCIS in the original proven malignant lump came back as being pleomorphic. The pleomorphic status was not known at the time of my biopsy. 

From everything that I have read, unusual things happen all of the time with bc.  Everyone has a different pathology.

Good luck with your surgery and I wish you the best of luck with your treatment.  Hopefully your pathology report will show good news and that you will not have any node involvement and you will not need chemo.

Please let us know.

Dear MarieTherese:

I hope that you get the results soon.  The anxiety caused by the waiting and wondering is almost worse than the diagnosis itself.  It is extremely hard to endure.

Second opinions are a great option.  I went for a second opinion and I am glad that I did.  It was the best decision that I ever made.  I ended up being treated at M.D. Anderson Cancer Center in Houston, Texas rather than in Florida because I went for a second opinion.

Good luck again and I wish you the best.

My diagnosis improved going from biopsy results to post-surgery pathology results. My biopsy had me as HER2 positive but later, after surgery, my results were negative.

Hi Marie, I did have an initial scare- the lab measured my tumor after surgery and told me I was Stage 2a, instead of Stage 1a as had been measured on ultrasound and MRI. I begged my surgeon to ask them to double check, she did to "humor me," and they had made a mistake! They accidentally measured the entire specimen, not just the tumor. Turns out the MRI was exactly correct- the tumor was 1.3! (Moral of the story- if something seems wonky, get them to double check, even if they act like you are crazy).

The only other surprise was that I had some associated DCIS, which my surgeon said was focal to the tumor and very common. So I had to do a re-excision but that took care of it.

All other pathology was the same as biopsy.

My biopsy said likely 1.5 cm DCIS, grade 1. It shrunk after lumpectomy to 5mm and grade 2-3 so more aggressive but smaller than they thought. I guess it changes after pathology from the surgery a decent amount of time. I did not get my ER/PR status until after lumpectomy though. They did not do HER2 at all with me. Am guessing due to it being pure DCIS. I was at Yale's Smilow Center which is a nationally ranked (NCI) cancer hospital so they are definitely doing the up to date latest testing. They did tell me my Androgen status (AR) after which many do not.  

april, I was told that DCIS is always HER2 positive, not sure why: there was a little DCIS mixed in with my IDC/ILC from the biopsy so my MD's think that is why I got a false positive HER2 from my biopsy.

Hi April:

I agree. If your diagnosis was pure DCIS, Stage 0 (with no micro-invasion or invasion), then this is what the National Comprehensive Cancer Center (NCCN) guidelines (Version 3_2015) say about HER2 testing (emphasis added):

"Although HER2 status is of prognostic significance in invasive cancer, its importance in DCIS has not been elucidated. To date, studies have either found unclear or weak evidence of HER2 status as a prognostic indicator in DCIS. The NCCN Panel concluded that knowing the HER2 status of DCIS does not alter the management strategy and routinely should not be determined."

Thus, at least under this guideline, HER2 testing is not considered necessary with pure DCIS.

BarredOwl