Three Negatives Don’t Make a Positive

jamieroundmed-100

There are days that will live in infamy, everyone knows what happened that day, where they were.  December 7, 1941.  November 22, 1963.  September 11, 2001.  And for me, Friday, October 5, 2012.  A few days before I’d seen a breast surgeon, she was so sure that the cyst she’d aspirated was not anything to worry about that I really wasn’t even thinking about her call.  In retrospect, I think I was very lucky those few days—I felt none of the anxiety that so many women feel waiting for pathology results.  To be sure, I wanted the fluid sent to pathology, but I wasn’t any more concerned than my surgeon.  Early the morning of the fifth, I got up and headed to the hospital for an umbilical hernia repair to make pretty again the belly button ravaged by pregnancy, having totally forgotten about the pending pathology report.  The procedure was quick and easy, and I was home sleeping off the meds by noon.  I woke to a voicemail from my breast surgeon, telling me that her office would be scheduling me some follow up procedures on Tuesday (Monday was a holiday)—a comprehensive mammogram and an MRI, and that she’d call me back when she was out of her afternoon meeting.  Admittedly, those next few hours were pretty anxiety filled.  I was super sleepy from my meds and sore on top of that, but didn’t want to go to sleep and not be able to talk to my surgeon when she called back.  When I finally talked to her, she told me that the pathology revealed an “abnormality,” and I think she wanted to leave it at that until I would see her the following Wednesday.  We had chatted in her office briefly, but she didn’t know my background.  Not quite on the level of Reece Witherspoon and the “do you KNOW who I am?” scene, I gave her a thirty second review of my background and asked her to please explain to me the nature the this “abnormality.”  (I think I’ll forever dislike that word.)  It was like she was the teacher from Charlie Brown.  “Wah-wah-wah-wah…” I had to ask her to repeat herself.  Invasive ductal carcinoma.  I caught my breath and then asked for the ER/PR/HER2 status.  ER: negative, PR: negative, HER2: negative.  Triple negative.  Another deep breath.

Now it’s time for me to don my scientist cap for a moment.  (Feel free to skip this paragraph if thinking about science makes your head hurt!) Most normal adult tissue doesn’t grow much, and when it does, the cells have specific ways of knowing when they should grow and when they should stop growing.  Cancer  cells have figured out ways to exploit or circumvent these normal controls.  Receptors on a cell’s surface are one way a cell is alerted to grow, and having far too many of these receptors can allow it to grow uncontrollably.  In breast cancer, the estrogen receptor (ER) can be over expressed leading to expression of the progesterone receptor (PR) and ultimately, uncontrolled cell growth.  A cell with too much ER tells the pathologist that the cell is using estrogen to grow. Even if the pathologist doesn’t see too much ER,  the small amount present could be very active and make a lot of PR, so again, this indicates that the cell is using estrogen signaling to grow.  Tumors that are ER and/or PR positive are considered hormone dependent.  As a class, these tumors tend to be less aggressive and can frequently be treated with good results using Tamoxifen, which blocks estrogen signaling in the breast.  HER2 is another growth factor receptor, and tumors overexpressing HER2 respond well to treatment with Herceptin which specifically targets that receptor.

And then there’s me.  Triple negative.  There is no specifically targeted therapy for triple negative cancer.  Astute followers of this blog may notice that I haven’t discussed my receptor status here before, even though it was the first question I had for the surgeon.  Put simply: triple negative is bad.  From the instant she said those words, I knew.  Chemo, probably AC followed by T.  Then a double mastectomy.  Then probably radiation.  I allowed my brain to think no further into the future than that.  Triple negative cancer is, as a class, much more serious—treatment is more aggressive and long term survival isn’t as good.  Thankfully, a PET scan a week later showed that I didn’t likely have any nodal involvement—all the cancer was contained in the breast—and that’s very good news.  My doctor was so encouraging.  I can remember her telling me that triple negative was really bad, but when caught early (like mine) it is very treatable.  She told me it would be a rough year, and then it would be over.  And so for those who care about me, those who are inclined to look things up online (yes, that includes you, mom!), I kept those words to myself.  I’ll write later about my thoughts on looking for medical information online, but in general, it’s best not to.  I didn’t want people reading all kinds of horror stories and thinking they would become my story.

In the past few weeks, in preparation for meeting with the Georgetown advocacy group, I’ve started looking into the current trends in breast cancer research, and I’ve found that triple negative breast cancer (TNBC) is a big area of research.  I’ve learned all kinds of things that I still think I might rather not know, at least not now.  It’s not that I believe that ignorance is bliss, but there is such a thing as having too much information.  I’m not sure I was ready to read everything I did.  But if you’re tempted (and I repeat, please don’t be!), I did find one report that spoke to my case specifically and was very encouraging.  It looked at cases of women who received chemo before surgery like me (called neoadjuvant chemotherapy).  Those who had no cancer cells remaining at the time of surgery, who had a complete pathological response, like me, had much improved long term survival.  I’m in good company in the shadow of what could have been a very bad situation.

And so October 5 will be a day, though probably not marked on my calendar, that will be forever marked on my mind.  Maybe I’ll mark it on my calendar after all.  I’m looking forward to being able to celebrate on that day for many, many years to come.

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