Atypia....

Alieire

Atypia....

Alieire

I had a very difficult time trying to determine which would be the most appropriate forum for this post, or what subject line to use. I ended up with this one because even though the content is important and and relevant for Newly Diagnosed, Waiting on Test Results, Surgery and others, I guess I figured it might help people here the most - people like me who have "gone through" the waiting, the diagnosis, the waiting, the surgery, the waiting, the pathology, the waiting, the treatment, the waiting, the follow-up screening, and oh, did I mention the waiting?  

I've copied and pasted below parts of "the story" from assorted e-mails, so this whole post has ended up all much, much longer, and more long-winded than I'd like, but I thought if the information I learned helps just one other person (understand, be reassured), then it's worth it.   If anyone can distill or summarize this to be shared elsewhere, I'd appreciate it.

The Cliff Notes background is after DX 2/07 triple negative IDC, lumpectomy, chemo, radiation, and being BRCA1+, I started this year off with suspicious findings on my very first post-BC surveillance MRI. A rollercoaster of events followed, the headlines being that I had Fine Needle Aspirations of two out of three lesions, and that one of the two showed Atypical Ductal Hyperplasia, and an excisional biopsy of that lesion along with the third, non-FNA'ed one was performed three weeks ago. The atypia was the concern, given my history, BRCA1 status, and that this was on the contralateral side - exactly where I am most vulnerable. (Oh, and should mention that I did not, and do not, want a mastectomy, prophylactic or otherwise.) Of course, I understood that atypia may mean nothing, that atypical cells do not necessarily indicate the presence of cancer, or predict it. But they might. The doctors weren't "very" concerned, but surgical removal was indicated, hence - concern.       

Ok, so here is an excerpt from the e-mail I sent out after receiving the results of the surgical pathology, entitled "reprieve":  

Apparently it's good news, but a rather unexpected and strange result, so I'm still trying to process the information. Plus, I'm sending the pathology off to Sloan Kettering for a second opinion, as they not only confirmed last year's findings, but also found additional and important details.   Specifically, the "surprise" (to me) result is the absenceof atypia in the biopsy. Apparently, this can happen, just as the possibility of a sample from an aspiration not picking up the presence of atypical cells, but nevertheless this means a rather weird set of circumstances and coincidences given the whole picture. And the even odder fact is the exact nature of the biopsy's diagnosis. While indeed benign, the type of lesion I had (Sclerosing Lobular Hyperplasia) is extremely rare - like 3% of ALL benign lesions. And furthermore, it is more common in young women of African American heritage (and though this population is also prone to triple negative tumors, I could find nothing in the literature tying this type of lesion to either triple negatives or BRCA1+. In fact, it is so rare that there is little to be found in literature about it at all).  

So, bottom line, I guess, is that I have an "all clear" for now (contingent upon MSK's evaluation), and that for all future alarms, false or not, I now have a track record to show that not only am I lumpy to begin with, and not only do I have a history and a mutation to raise considerable concern and caution, but that I have a predilection towards something highly unusual in my lump arsenal as well. Thus, even more false alarms likely in my future? A reason to be more optimistic of a benign result when lumps are detected? I don't know.

It's not that I am reluctant or resistant to accepting or believing good news. I am just so shaken and unsettled by this experience - and the knowledge that there is no avoiding nor minimizing the reality that a recurrence/metastasis/new primary was and remains very real, even immediately after aggressive treatment. And will continue to remain so, despite these results. So when someone used the word "cured", it hurt - because I don't think I will ever feel that way. Not sure if remission is a better term...I just don't really feel any strong sense of relief or reason to celebrate because it simply feels temporary - *these* findings were benign. But there will always be others.    

And this is from one I wrote yesterday....  

Assuming that the evaluation by Sloan Kettering would take at least a week from the time they got the slides, I called them on Thursday just to check whether they even arrived. I learned on Friday that not only had they received them, the review had already been completed, and results faxed to my doctors. Of course, neither they nor my doctor's secretary could tell me anything over the phone, except for the fact that the report was short and a single page. One doctor left me a voicemail saying that she received it, and "looks good", but that I was to call Monday to set up an appointment. Seriously wanting to believe that these were all good signs - a quick and brief confirmation of benign findings, of course I had to twiddle my thumbs for yet another weekend before actually being able to see the report for myself yesterday. Indeed, it could not have been any briefer, or the findings any more conclusively benign.  

But that, naturally, left me even more confused and full of questions.  

Coincidently, I just happened to read an article on Friday, written for a magazine by someone I "met" online in one of the breast cancer forums, which was a comprehensive, useful and user-friendly guide to understanding one's pathology report (Thank you, NoSurrender!). And within the article were several quotes by a pathologist at Sloan Kettering - the same one who reviewed my slides from last year, (who indeed confirmed the original results, but also found important additional information and details - i.e., the tumor wasn't just nasty, it was really nasty), and as well, the same pathologist to whom I was instructed to direct this year's package. What particularly caught my eye was the comment that most patients rely on their surgeon to give them a filtered version of the information, and her quote: "But those who want to know more shouldn't hesitate to call the pathologist who signed the report." And from one of her colleagues "...savvy patients often do call us directly."  

So, even though I have an appointments with my surgeon on Wednesday and oncologist on Friday, of course I just had to call! And I must say, our conversation very, very enlightening and educational. It has certainly been an intense year of crash courses in medical and scientific terminology (not to mention procedures, interpretations and implications). But her explanation is highly significant not only in enabling me to completely understand recent events, but leaving me much better prepared to process future ones. The bottom line isn't so much that the atypia detected from the Fine Needle Aspiration disappeared, or wasn't representative, or was misinterpreted - it is due to the limitations and criteria involved with FNA's for diagnostic purposes. Cells may be classified as atypical under FNA standards, but when looked at in the "bigger picture" - the surgical biopsy - they may be normal, or within a normal range.

The best way to illustrate this idea is via analogy: Looking through binoculars at say three people standing in a crowd...one of them looks particularly short next to the other two, or perhaps the two appear to be exceptionally tall next to the one. Zoom out a bit and none of the three stands out as being anything other than within the average range of heights in the crowd (or perhaps one extreme was indeed an accurate assessment, but only by looking at the whole nearby crowd could it be determined *which* of the heights was the "abnormal" one.)  

The pathologist confirmed that given my history and vulnerability, a surgical excision was absolutely the right thing to do, as well as getting a second opinion. She reiterated and elaborated further on the fact that while the results from FNA's may be able to provide definitively malignant or benign diagnoses (let's say male or female in our crowd analogy, oh wait, that's no longer obvious these days, even at close range) for something designated as atypia - not just the test itself, but the scoring of it - is not conclusive. Yes, that person was very short compared to the other two, and the fact that they allowed a short person in the crowd is notable. But if they allowed a whole bunch of short people in, than that one individual is nothing special.  

In fact, when I questioned the pathologist further about that bizarre, rare finding on the original report, wondering about her interpretation and why her brief report made no mention of it, her explanation was even more interesting. For one thing, she spoke with the original pathologist to discuss it. But intriguingly, aside from the fact that different doctors and different facilities can differ in both interpretations and labels, in her opinion the lesion was just SO "not special" that she wrote her report in such a way to reflect and emphasize that conclusion. At this point, I had enough lightbulbs over my head to teasingly inquire "what do you mean I was nothing special?" So, while she laughingly recanted the term, she explained that she definitively interpreted everything she saw as normal and healthy, with no evidence and no suspicions whatsoever of anything to be concerned about.    

If anyone is still awake at this point, I hope some of this made sense. Still worn out from the whole experience, the rollercoaster, and trying to get my head around it all. But at least much of it IS actually making sense - to me - now anyway.

AnnNYC

Hi Alieire,

Sorry for the waiting and the worry -- but it sounds like you're finally convinced the results are good, right?  (and that they're valid!)

Best,

Ann