False Positive

It has been a really tough semester.

Our department on campus lost a colleague and a friend in a senseless act.  It is not possible for me--I mean, I do not have the ability--to fully express the loss and grief we feel.  And the pain we all imagine for our friend and her family and her lifelong friends around the country is stunning.  This is all I'm going to say.  Her loss is not about me or my suffering.  My--OUR--loss is about her and the hole in the universe of our lives and this community we are all forced to acknowledge.

So, tough.

In a much different vein and selfishly focused on me is that I started a new administrative position at the university.  There is a steep learning curve to any new position, but this is a very positive event and I am excited about it.   Still, eustress is stress.

And then there was this year's annual screening mammogram.  I'm at the age where so many of my friends are getting breast cancer.  And I mean MANY.  I have close friends, close neighbors, close colleagues, celebrities and it feels like pretty much everyone in between is getting breast cancer.

My screen came back this year with "changes."  I've been going regularly for several years now and I always get a 3D, tomosynthesis mammogram AND YOU SHOULD, too.  It used to cost about $35 to $50 extra, but it's such an improvement over traditional mammograms that many insurance companies are starting to cover it.  Get the 3D mammogram!

So, the good news is that tomo mammos reduce the number of False Positive call backs (the number of people called back who do NOT have breast cancer) while still NOT reducing the number of actual cancers detected.  I've seen lots of estimates, but generally, about 8% of people get called back after a screening mammogram, and generally, only about 13% of them have cancer.  The remaining 87% are False Positives.  ((All my friends who are in the 13% are now rightfully shaking their fists at the screen))

I hope you note from these links that I don't do Google Searches, I do medical journal searches.  Big Diff.

So I went in for my diagnostic screening.  Based on what I read, I expected them to use ultrasound (US, also known as sonography) to find a lump, look at it to see if it was a fluid-filled cyst (Yippee!) or something more solid. Then they would do a biopsy, wait a few days and tell me: You lucky dog!!  You're one of the 87%.

So, I overheard the US tech say that it was a 1 cm oval with (blah, blah) edges (Later, I found out she said irregular edges).  She started poking around on my left boob.  She took out a ruler, measured my boob, and looked around some more.  She went to get the radiologist and I asked him if my husband should come in. "Not yet," he said. "We can't find it!"

First, I was relieved!  There is nothing actually there.  But then I thought to myself, "Myself, why does the ultrasound/sonography show nothing when the highly sensitive tomo mammo show an enlarging 1 CM mass?

They asked me to sit in the waiting room for a moment, a moment in which I sought out Dr. Google who said that not finding a mass on US is rar-ish.  Doctors, according to Dr. Google, will sometimes use an MRI to get a better idea of what is going on.

Then the radiologist asked for some more mammos including a spot mammo.  This is where I curse the stars that in an effort to get my diagnostic screening done as quickly as possible I agreed to go to a satellite office, which had just gotten the capacity to do tomosynthesis.  These require a bit more time to learn to use and interpret correctly.  FURTHER, the research I found later said that a spot mammo after a tomo is not protocol.

ANYHOOOOOOOOOO.

After all these new mammos were done, the radiologist brought me back and showed me what seemed to me, an enormous white mass on the screen.  "This is what the screening mammo shows," he said. "But here is what we just found.  It looks smaller than what they found. At least, I think that's what they were talking about. But I can't biopsy it because I can't see it on ultrasound.  But I'm sure it's not cancer anyway."

:-/

So you take a poorer image on new equipment and claim it's a better view than the one the techs  who have had years' experience took, can't do the procedure you expected to do because you can't see it on US, and tell me "but I'm sure it will all be fine."

Oh, the confidence in his bedside manner.  Reviewer #2 rejects your thesis and its data and asks for a completely new submission.  ((Academic humor))

I ask for an MRI.  It's expensive, he says. But won't insurance cover it?  Yes, but think of ALL the false positives it will see, he says.

:-/

I leave.

I do more medical research.  It takes a while to find the articles because I don't really want to know what Dr. Google says.   I want to know what real medical doctors and radiologists use as in the field, which is apparently NOT,

"HOLY SHITE.  THEY CAN'T FIND THE MASS ON ULTRASOUND BUT IT LOOKS LIKE A BIG HONKING SPOT ON MY MAMMOGRAM!"

So the actual medical words are Tomosynthesis detected and sonographically occult. Occult?  Who knew I'd need Buffy the Vampire Slayer. Should I make a pentagram of salt around my boob?

So, there are a few articles out there involving this issue. I even find an article that ISN'T EVEN IN PRESS YET (but is available online).  The university library gives me full access to this article and I am happy to send it to you  But the gist is, of spots/masses/lesions found on 3D mammogram but are not found on ultrasound:  approximately 25% are cancer, 25% are suspicious lesions that need surgery, and 50% are benign.  Them's some very different odds than I've seen before.

Other papers report that masses that have architectural distortions report similar results. You can also add non-palpable and find the same papers.  Palpable takes you down another path.

So I ask for a second opinion from the competing radiology clinic HOPING they would take new mammograms, since my trust of the diagnostic set from the satellite office are suspect. I also asked my primary care doc if the radiologist mentioned architectural distortions.

So, the radiologists at the other clinic read the mammos from my last 3 years, the screening, and the diagnostic visit.  They all agree my BI-RADS score is 3 (probably benign) My primary care doc said no mention of architectural distortions, just asymmetry. In the brand new, hot of the presses study above, *all* of the masses that reported just asymmetry in the masses and were tomo detected and US missing were benign. ALL. 100%.

A friend said cancer jumps out of the mammogram and screams at you.  (Figuratively, of course)

I go back for another diagnostic in 6 months.  And you can damn well bet I am going to the main office.

Yes, I actually would like another diagnostic screening RIGHT NOW at the main clinic.  But I think what's going on is safe enough for me to wait 6 months.

So, um, yeah.  It's been a tough semester.  Nothing compares to the loss of how this semester started.  Everything pales after that.  But it's still been rough. I think we all have to just sit with it and let it process through and wait for time to make it less raw.