After working exclusively on breast cancer-related issues for several years, I have decided to broaden my horizons with a new blog, A Time For Such A Word. I couldn't just delete all the blood, sweat, and tears of this work though, so please feel free to browse the archives.
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Monday, May 16, 2011

If you're not with us, you're against us?

In the last couple of weeks, I've had a lot of people ask me why I am advocating against BSEs and mammograms. 

My answer: I'm not.

There is no evidence that BSEs save livesMammograms are not as effective on women under age 50.  As several people have pointed out, however, they are the most accessible tools we have right now, so telling women to stop is dangerous. 

My answer:  I didn't. 

My point is, and has been, that the conversation is stopping at BSEs and Mammography, without any acknowledgment of the downside.  I know it's harder to embrace a complex message, but my story illustrates how our current screening methods are both failures and successes.

I had been told my breasts were dense and lumpy, as are many pre-menopausal women's breasts.  So while I knew there were lumps there, I had my annual exam with my gynecologist and he never expressed a concern.  When I was forty, I dutifully went for my first screening mammogram.  It came back clear.

When I was forty one, I dutifully went for my second screening mammogram.  The mammogram itself came back clear, but I received a call back because the person reading the mammogram detected the edge of an "axillary lymph node" that looked abnormal.  I had no idea what that even meant, but came to find out that there was a weird looking lymph node in my armpit that showed up in the mammogram.

So I was called back in and given several diagnostic mammograms of my right breast.  Diagnostic mammograms are more targeted than screening mammograms and they take pictures from several different angles.  Two doctors examined those and said the breast was fine. 

From there, they did an ultrasound of the lymph node, then a biopsy, then another biopsy, then an MRI, then a CAT scan, then a bone scan.  Finally I had that node removed along with five of its suspicious looking friends. 

In the meantime, I switched doctors two more times because everyone was confused and that made me quite uncomfortable. 

Then I found a doctor who had clarity.

In the end, I had about 8 cm worth of cancer in my breast.  That weird lymph node had a 1.5 cm tumor of breast cancer too, meaning it was on the march. 

The doctor I settled on could see the tumor not only in my 41 year old screening mammogram, but also in my 40 year old screening mammogram. 

So on the success side, if that doctor hadn't seen the lymph node, the cancer might have kept on marching until it took up residence elsewhere in my body, become metastatic - "treatable but not curable." 

On the failure side, there was no early detection for me.  My cancer had become "locally advanced" when it was detected. 

Now, would my outcome be any different?  I have no idea.  But I am sure that less than perfect screening gave me a false sense of security and led to a whole lot of testing that took up two terrifying months during the Summer of 2008. 

No sense in playing what-ifs, I know, but I put my story out there to illustrate the nuance of our so-called early detection methods.  So yes, we have to take advantage of the tools we have, but that doesn't mean that we become complacent.

I don't know about you, but for me, what we are being offered is just not good enough.