Pathological Response

I was diagnosed with breast cancer just over five months ago.  I know that lots of people start blogging right after diagnosis, but I just couldn’t bring myself to write about it until now.  Couldn’t allow myself to write about it until now.

Much of my treatment is behind me.  I’ve already jumped through a hell of a lot of hoops and cleared a hell of a lot of hurdles: umpteen biopsies, two MRIs, a full-body CAT scan, a repeat scan of the lungs, a bone scan, chemotherapy, a PET scan, and a mastectomy, in that order.  It’s not that I didn’t want to write about any of this stuff at the time.  It might have made for better reading if I had (it would have been more suspenseful, at any rate).  It’s just that being a cancer patient sometimes felt like a full-time job.  A really, really hard job that doesn't pay.  I'm good at finding jobs like that.

There were scary tests and marathon chemo sessions (each infusion took six to seven hours) to attend to.  Then there were the more mundane tasks: endless treks back and forth to hospitals for consults and second opinions, for the lab work required before each and every chemo session, the shots required afterwards to boost my white blood cell count, and the echo-cardiograms required at regular intervals in between to make sure my heart was still in good working order.  I tried to schedule these to end by 2 o'clock, whenever possible, so that I could pick up the kiddos from school and take them to tennis lessons, swimming classes, basketball games and the occasional play date.  My kids were going to have as normal a school year as possible, dammit. 

I spent my downtime learning everything I could about cancer.  Everything.  As if my life depended upon it.  Because, in the end, who knows?  It just might.  I attacked my research with gusto, downloading articles from the most distinguished medical journals in the country and cursing myself for never having taken a statistics course in grad school (why, oh why, don’t they require anthropologists to learn that sh*#?).  One wrong move and I felt that I might seal my fate.  Doom myself to a “negative outcome.”  How’s that for a heavy burden to shoulder?  

Only now do I feel that I can let my guard down enough to string a few sentences together without risking imminent danger.  My response to cancer might have been geeky (you decide whether you think it was pathological or not!) but it gave my life structure and purpose at a time when I needed both desperately.  Besides, there were decisions to be made – many decisions to be made.  Which chemo regimen was best?  Which oncologist?  Which surgeon?  Mastectomy or lumpectomy?  Reconstruction?  Keep the other breast or toss it?  I have never been one to make decisions without facts – cold hard facts – and I was in hot pursuit of them.  What I found was that the “facts” did not dictate any one particular way of doing things.  Often the best decision was just the one that felt right. 

I call this blog experiment of mine “Pathological Response” not only because I like poking fun at my geekiness, but also because I got a response I’d been hoping for a few days ago.  It was from my surgeon and she was calling to share the results of my final pathology report.  “Hi, Joanne, this is [insert surgeon's first name] and I’ve got some exciting news,” she began.  I was so surprised by the familiarity with which she greeted me that I didn't even have time to be nervous.  I hadn't known we were on a first-name basis.  After all, we had only met three times and I was unconscious for most of the third meeting!  She went on to tell me that the chemo had killed all of the cancer in my breast tissue.  In addition, she told me that there was no cancer in the removed sentinel node or in a “suspicious-looking” area of the other breast that they had biopsied on the day of surgery “just to be sure."  I had achieved what they call, in Cancer Land, a “pathological complete response.”  I’m pretty sure that this is what they used to call 'complete remission'. I’m not sure why they changed the lingo (maybe 'remission' is too close to the word 'relapse'?).  What I do know is that some doctors view it as a Holy Grail of sorts.  Okay, so I had to think of a way to work Monty Python into this...  (A bit forced, I know, but it was time for a comedic interlude anyway!).

“We know that patients who achieve this type of response have the best survival rates,” the surgeon went on to say.  After all these months, I am still struck by how odd it is to have others discuss my survival in casual terms.  Like when people ask me, point blank, “What stage is your cancer?”  As if they are asking what type of pie I like best.

If I weren’t so neurotic I might have jumped for joy at the surgeon’s good tidings.  Instead, I pressed her for reassurance: “Was it crystal clear which sentinel node you needed to remove?”  I knew from my reading that some people have multiple sentinel nodes removed but in my case they had removed just one.  (It didn’t help that my husband had told me when I awoke from the anesthesia that they had told him two).  I couldn’t let the doctors make a mistake with the nodes.  When it comes to cancer treatment mistakes can be costly, as you can imagine.  (We can talk about mistakes some more when I write about how I was diagnosed with this godawful thing in the first place).  “Very clear,” she answered confidently.  I had grilled her before and she had girded herself.  I knew that she tended to see things in the most optimistic light possible and this made me strangely nervous.  An optimist, I figure, is more likely to let their guard down and overlook something.  My job, as I see it, is to inject a little pessimism (or at least skepticism) into the situation.  To keep my doctors on their toes without being an insufferable know-it-all. 

The Insufferable Know-It-All

So I sit here today with the knowledge that I have received really good news about how my body has responded to chemo and will (presumably) respond to the next phase of targeted therapy.  Joyful yet afraid to let myself savor the moment too much. 

Today I called Beth, the social worker at the hospital where I have been receiving chemo and where I will continue to receive therapy for the next seven months.  The targeted therapy I receive is called herceptin and it has revolutionized the way in which doctors treat my type of breast cancer: the HER2/neu+ kind.  (If herceptin had been invented sooner, it might have saved my grandmother – the grandmother I never got to meet and who died of either breast or ovarian cancer.  One of those "women's cancers."  (I'm pretty sure it was breast cancer but Irish farming families don’t discuss such matters so I can't be sure...).  Beth, by the way, is one of the most wonderful, empathetic, and knowledgeable people on the face of the planet.  She was a bit more subdued in her response to my pathology report.  Perhaps it’s because she knows how much unbridled optimism unsettles me (I prefer the careful, cautious kind).  Or maybe it’s because she’s seen up close how unpredictable cancer can be.  

Beth fielded all of my questions without the slightest hint of annoyance.  She and I discussed the meaning of the “fibrotic changes” the pathologists saw in my sentinel lymph node.  These changes typically indicate that cancer had taken up residence in the node before being evicted by the chemo.  This was a detail my oncologist had shared in an email back-and-forth about my path report (note to self: use abbreviations like “path report” because they make you sound cool).  Yet it had been omitted from the verbal report I got from my surgeon.  Sh*t!  Did I mention that she often omits things?  That I'm often left to wonder if the omission was purposeful or due to her inattention? 

Did she think she would spare me some worry if she left the bit about my lymph nodes out?  If so, then she doesn’t know me as well as Beth does.  I crave information.  But how much should I worry about this new piece of information?  About those lymph nodes that hadn’t been tested but that might show evidence of “prior” cancer or, worse yet, active cancer if they had been?  If I hadn’t had chemo before surgery, I'd have more information.  In fact, I might have been told that I needed radiation as a matter of course.  Yet the surgeon hadn’t suggested radiation at all.  Does that mean the docs think the herceptin will mop up whatever residual cancer might be leftover in my system?  Cleanup in aisle five! As long as something mops it up, I guess!

In the course of my web browsing, I sometimes visit the breascancer.org discussion boards.  Like a good anthropologist I studied the ways and customs of the folks using these sites, in particular the fancy call numbers people post after their names.  These letters and symbols were hard to decipher at first, but I got pretty good at it over time.  They generally tell a “story” about a person’s cancer experience (date of diagnosis, for example), type of cancer (hormone receptor status and the like), its staging (size and lymph node involvement), and the treatment received (like “rads,” which is the totally rad term for radiation).  

One of the things I asked every doc about, every step of the way, was the size of my tumor.  Size is linked to stage is linked to likelihood of lymph node involvement is linked to… well, you get the picture.  Since they recommend chemotherapy before surgery for my type of cancer, my doctors could only gauge its size from MRIs.  Not quite as satisfying as having a chunk of tissue in hand to measure (ewwww!).  “MRIs are very sensitive but not very precise,” they told me.  Somewhere between two and five centimeters was their best guess.  Gulp!  There's a big difference between two and five (yes, anthropologists can do some math!).

Was this a case of covering their own you-know-what's?  What did they really think?  At one point my oncologist declared, “We might never know how big the cancer was.”  Never?!  Seriously?  If my biopsy samples hadn’t been sent to Dana Farber and reviewed by pathologists there, I might wonder whether I even had cancer at all.  What if I had been part of a giant psychology experiment?  Now wouldn’t that be pathological?  The upshot of all of this imprecision is that I never had any fancy letters or numbers of my own.  Now, five months after diagnosis, I finally have some bona fide cancer credentials.  Some street cred.  They call what I have achieved “pCR” – for “pathological complete response.”  I think complete pathological response sounds better, but I guess CPR was already taken.

So I get a nice “pCR” to put after my PhD (yep, in Anthropology).  When I’m not researching the links between pCR and “outcomes” (another bizarrely casual way of referring to whether people live or die), I hope to write more about my adventures and misadventures in Cancer Land.  I don’t know how consistent I’ll be with this, but I hope you'll read along even if I’ve already issued some spoilers.  

Joanne Cullinane, Ph.D., pCR

Dx: 10/05/2015, IDC, “dunno” cm, Stage “dunno,” Grade 3, “dunno”/”dunno” nodes, ER+/PR+, HER2+