Mixed Results NO DCIS but more atypia! Help LEAF

shabby6485 · February 2012

Hi again,

Pathologist called with the good news that there was no cancer found in either biopsy (stereotactic), however flat atypical epithelial cells were found at both sites.

WHAT? Not again! Off to surgery again!

Leaf, who does this mean? How can atypia be found in both and what are the chances I will be upgraded after excisional.

I am really depressed...

Anonymous · February 2012

shabby------ in 15 to 30% of the time something more serious may be found, but that means in 70 to 85% of the time it WON'T! So hang onto those #s---it 's highly likely they won't find anything more serious. The great news is that they didn't find and DCIS, LCIS, or invasive bc! So go to Aruba and have a great time!

Anne

beacon800 · February 2012

Shabby, I had a finding of flat epithelial atypia along with my LCIS finding on biopsy. Subsquent surgical biopsy did not find anything worse. I agree with the stats awb posted as those I have also heard. You have a good chance of nothing more in there, especially since they did not come with anything worse, like DCIS, LCIS.

It is a pain, I know, cause it feels like one thing after the other. But just keep going, keep going.

shabby6485 · February 2012

Thank you awb & beacon800, Would you happen to know if the 20-30% upgrade only pertains to malignancy? Or are other B9 high-risk lesions a part of that percentage? I have been scouring the internet (bad, I know) for studies on FEA & upgrade after excision but there is not much out there. I am leaving for vacation tomorow so I promised myself that I would let this go until I get back. My surgery is on the 29th. Thanks, ladies!

beacon800 · February 2012

Here is a study. They stats are at the very end. There is a lot of confusion about flat epithelial atypia. Sigh. Like almost all breast issues, it's not cut and dry!

http://ajcp.ascpjournals.org/content/131/6/802.long

runfeelbetter · March 2012

shabby 6485

Hope you had a nice break and smooth surgery and recovery.

I got the same news from stereo tactical biopsy using 9 gauge needle, yesterday. flat epithelial atypia "FEA". recommend excision biopsy.

It doesn't looks llike there is plethora of data on FEA and there doesn't seem to be a consensus on whether the finding warrants excision biopsy (which is basically a lumpectomy). I too read the study beacon 800 mentioned, done at Univerty of Pittsburg Medcal Center. I am trying to seek a second opinion/consultation. Have you find out anything more since your surgery? Appreciate anything you can share. Thanks.

shabby6485 · March 2012

Hi runfeelbetter,

Hope I can help. I had two areas surgically exised one week ago. One site was very deep and my surgeon ended up taking alot of tissue so recovery has been a bit uncomfortable. I had an excisional in 2008 and it was a breeze so I guess it depends. I am still a bit sore but am back to normal activities and even started back to the gym yesterday.

FEA is controversial. I decided to do the surgery because I am high risk due to many factors. My mother had BC very young. I also have a long history of benign biopsies with atypia(10 to be exact!). To date they have found ALH and ADH on my biopies.

I also researched the heck out of FEA before my surgery. I found the risk of upgrade is generally lower than 20%. Therefore, 80% turn out fine.

My latest pathology showed a progression from ALH to LCIS. LCIS is benign but a high risk marker for future BC. I am currently researching my options. But again, remember that I have had 10 biopsies in 4 years, ALL with atypia that were benign.

My surgeon told me the day of my surgury that this was going to B9 and he was right. I hope this is helpful and remember my history is quite different than yours. There is no harm in getting a second opinion because there is no consensus on how to proceed with FEA. For me, I had to have it done because it would bother me that I know it's there.

The excisional is really not bad and it will give you peace of mind. Like I said, the stats are on your side that it will turn out fine.

Hope this helped!

scaredycatwoman · March 2012

Hi I recently was diagnosed with LCIS in right breast from suspicious calcifications and now am being sent for an MRI in both breasts. I am very worried that even though the stereo tactic biopsy showed LCIS and not actually cancer, I feel that I am being treated as if it was cancer. I am such a baby and so scared and everyone in my life has tried to cheer me on saying that I should be happy that LCIS is not an actual diagnosis of BC. However, everyone in this discussion was telling this member to be glad she only had FEA and to be thankful she doesn't have LCIS !!! and now I am petrified again that after my MRI and wire localization biopsy, I will be upgraded to cancer!! I never realized how tricky and scary BC really is...I thought either you have it and they have found it in time or not or you don't have it. But what an eye-opener LCIS and BC is!!

Have you had any experience with wire-localization surgery/biopsy....Thanks Carol

shabby6485 · March 2012

Hi Carol

I actually was diagnosed with LCIS after an excisional/wire loc for FEA found on my core biopsy. My surgery was on feb 29th so a little under 2 weeks ago. My final pathology was LCIS, ALH and ADH.

Excisional biopsy is essentially like a lumpectomy. This is my second excisional as I had one in 2008 also. My first one was a breeze. No pain and super quick recovery. This time I had two areas where the surgeon had to take alot of tissue. So recovery has been slow for me but I don't think that is the norm. The wire loc is not bad. They numb you very well. Once your IV is in, you could ask for something to relax you before surgery. Really quick surgery. You will do fine!

runfeelbetter · March 2012

Thank you Shabby6485 for detailed information. Sorry that your recovery is slower. My mom too had a very aggressive breast cancer in both breast which she had to remove at age 38. She had a recurrence in lungs at age 45 which took her life. So I am a bit worried. Everyone in the medical field says I need an excision so I guess I am going to get one. I found a small lump 1/2 inch from where biopsy was done since my first post. I have a consultation with a surgeon next week so decided not to worry about till then. How do doctors know how much tissue to remove? Can they see the difference in tissue?

Caedwyn · April 2014

I know this is an old thread, but I've just gotten a CNB pathology report with FEA. Runfeelbetter, if you are still here, what did you do, and how did it go?

leaf · April 2014

As expected, it sounds like there still is controversy, and different studies differ.

This recent paper found the upgrade of pure FEA to cancer was 3.2% when excised, and it was more commonly upgraded when they also found ALH, ADH, or LCIS. They questioned the practice of surgical excision on all cases. http://www.ncbi.nlm.nih.gov/pubmed/24518220

In this study,

The upgrade rate of pFEA in our series was 9.6%. The presence of 4.8% of
invasive cancers is substantial and warrants continuing management with
surgical excision in all cases. http://www.ncbi.nlm.nih.gov/pubmed/23064777

There are other papers with other results on Pubmed searches...

Caedwyn · April 2014

thanks leaf. I found the full text of the one that urges excision, and they used a smaller needle for the biopsies. Mine was a pretty big needle, the cores were 4 mm diameter.

My feeling is that the most likely result of biopsy is ADH or something similar, and the FEA already puts me in a high-risk group, so why not just go directly to Tamoxifen? At least that would cut my risk all around and not just the area biopsied. I guess these are questions for the surgical consult. But I wonder if there is someone else I should consult with. Are GP's up on these things at all?

leaf · April 2014

Note 'high risk' group is relative. Some BRCA mutations put people at a ~ 85-90%lifetime chance of breast cancer, and I totally agree are truly 'high risk'.

Some papers have opined that LCIS is one of the 'highest risk groups seen under the microscope'; yet in another paper, the American Cancer society put LCIS as 'moderate risk', opining their risk might be 20 or 25%. I have gotten figures for LCIS as 'something between 10% and 60% lifetime chance- probably closer to 10% than 60%', another as something between 30-40%. LCIS is morphologically more advanced than ADH, ALH, and some papers opine twice the risk of ADH or ALH.

Even *if* they knew the risk of LCIS women definitely (which they don't) , they definitely don't know the risk of LCIS, ADH, ALH, or FEA women individually.

http://jnci.oxfordjournals.org/content/98/23/1673....

In other words, for 59% of the
randomly selected pairs of women, the risk estimated
for the woman who was diagnosed with breast cancer was higher than the
risk estimated for the woman who was not.
Unfortunately, for 41% of the pairs of women, the woman with breast
cancer received
a lower risk estimate than her cancer-free
counterpart. Thus, for any given woman, the two models were better at
prediction
than a coin toss—but not by much.

This does *not* mean that the risk of the average woman, or a woman with multiple risk factors is 59%; it means the risk prediction tool was correct about 59% of the time. That's about 9 percentage points better than a random toss of the coin. If the modified Gail model, with or without additional risk factors such as breast density, is this bad, for an 'average' woman, just think about how much we know about *your* risk.

Mixed Results NO DCIS but more atypia! Help LEAF

Comments

Categories