I Made a Medical Choice Too

I’m walking my talk about the transformative potential of narrative, here’s a summary of my story.

In the early summer of 2008, I went in for my mammogram, like a good little patient.  I was 41 and had a baseline the year before.  I got a call back, saying that the doctor was concerned about an “axillary lymph node.”  No lie, I had no idea what that meant (they’re in your armpit).  I had exactly zilcho experience with cancer.

I went back for diagnostic mammograms, then was scheduled for a biopsy of my armpit.  The dreaded call came.  Malignant, but unusual and unclear.

I went for a second opinion which involved a whole lot of scans, an MRI, and a torturous biopsy.  All those tests came back clear and the surgeon was baffled, then recommended I have my breast and all my nodes removed to let the folks in the pathology department figure it out.

I went for third opinion and the surgeon put me under, removed the node and five of its friends.  By the time I was awake, they knew I had invasive ductal carcinoma, the most common type of breast cancer.  What I thought was lumpy breast tissue was a large tumor, estimated to be 8 cm.  It was on the move, and a 1.5 cm tumor was in that node.  That’s considered locally advanced breast cancer, probably Stage IIIA.  I was given a five year survival rate of 68%.

Sixty-eight percent.  I was stunned.  I had a 32% chance of dying of breast cancer before my oldest would be a teenager. Still that thought sends a chill.

Turns out that tumor was too big to remove.  I had chemotherapy first, six rounds.  As a point of reference, I got my first phone call indicated an unusual mammogram in early July.  My first chemotherapy was September 11.  My summer was consumed by hellish uncertainty and ended up with the only slightly less hellish certainty of cancer.

In early December, after four rounds of chemotherapy, my surgeon reevaluated.  The tumor was shrinking in a Swiss cheese pattern and it was still not possible to remove simply.  The right breast had to go.

What about the other breast?  My surgeon, a matter of fact woman, said that I had about a 10% chance of getting cancer in my other breast in my lifetime, a risk that started low and increased over the years.  At this point, highly unlikely was of no comfort to me, the early age of my diagnosis already made me a statistical anomaly.  As a friend of mine who eventually died of breast cancer said to me, we are living proof not only of what can happen, but of what does happen.

The option many women chose is to have the mastectomy and reconstruction at once.  If that had been possible for me maybe it would have affected my decision but because of my original diagnosis, I had to follow up my surgery with radiation therapy which rules out prior reconstruction.

I know it was statistically unnecessary and my doctor reinforced that fact.  Still, all I could think about was the increased scrutiny of the remaining breast over the years.  Of the possibility of history repeating itself.  Of being back in that chemotherapy chair again — bald, weak, angry, scared.  I didn’t want the mammograms, the MRIs, the biopsies, the false alarms, the true alarms, the diagnosis.  Ever again.

I wanted it gone.

Halsted’s radical mastectomies, detailed well in The Emperor of All Maladies by Siddhartha Mukherjee, were the standard of treatment until recently.  Working in the pre-chemo era, surgery was Halsted’s only weapon for dealing with breast cancer.  He’d give women mastectomies but sometimes their cancer would return as metastatic.  He thought maybe he missed a spot and started removing more and more tissue.  Eventually he removed the breasts, the pectoral muscles, all the lymph nodes, and often even bone, leaving women horribly disfigured.

Given the choice, however, women would ask for this procedure because like the rest of us, removal seems like the intuitive option.  We know that we are worth more than the sum of our parts.  That’s why I decided to have my healthy breast removed and why, I think, Angelina Jolie made her decision.  I suspect she was wounded by watching her mother die of ovarian cancer at such a young age, and was willing to do anything to be around for her kids.  I know that’s why she did what she did, because that’s why all of us in that situation do what we do.

But after all that disfigurement the cancer still returned in some of Halsted’s patients.  We know now, or think we know, that breast cancer is a varied disease and whether it goes on to become metastatic (and deadly) is dependent on the type of cancer it is rather than the stage at diagnosis.  

We all want to think that we have control over the outcome.  We want to separate ourselves from our tumors and run the other way.  But just like in Halsted’s day, we are taking action that may be pointless or even exposing us to unnecessary risk. BRCA testing is a fairly recent technology and if history is any indication, what we know today is probably not be the final answer.   

I think our decision-making comes not just from a place of knowledge, but from the gut.  We all make the decisions we can best live with, a criteria that involves facts and objective information, but also guesswork and emotion.  When I made my decision I was bald and pretty weak; still reeling; traumatized; shocked; and a magical enough of a thinker to believe this all might be a mistake.

Heck yeah my decision was irrational.  Informed but irrational.  I’ve never regretted it but my decision isn’t the best for everyone.

I’d like to end with a happily ever after after story, and on one level I will.  Just last month, I helped my daughter celebrate her 13th birthday.  I know that’s largely because, as Peggy Orenstein put it in her New York Times article, my disease was treatable.  But I am still breastless and living far outside any societal definition of beautiful.  Anyone who thinks that a simple “boob job” is the answer, I’ll remind you of Humpty Dumpty.  The king’s horses, men, advanced surgical procedures, and silicone implants won’t bring back what I’ve lost.  While Jolie may end up looking the same, she’s not the same.  Surgeries are risky and options are limited.

Peggy Orenstein and Gayle Sulik have written extensively and eloquently about how people vulnerable because of breast cancer or at risk of breast cancer can be exploited.  Please take some time to read their work.

Breast cancer is a legitimately frightening disease. There is no way to lower your risk to zero – women without breasts die of breast cancer, women without ovaries die of ovarian cancer.  Our instinct may be to cut and run, but the truth is that there is still a whole lot we don’t understand about the disease.  Let’s not be lulled into a false sense of wellness by celebrities, sensational journalism, or the false hope of simple solutions.

3 thoughts on “I Made a Medical Choice Too”

  1. Great piece, Katie. I’ve been thinking a lot about the Halsted days and how that was the protocol and option of choice for so many years. Something that we would call barbaric today. “Our instinct may be to cut and run, but the truth is that there is still a whole lot we don’t understand about the disease.” So, so true.

    And It’s also true that “our decision-making comes not just from a place of knowledge, but from the gut.” How often do we rationalize our gut decisions? All the time. Then when it comes to systematically analyzing a public health problem, I think that fact makes it all the harder to comprehend when the data doesn’t fit our frame.

    Thanks for sharing this.

    Gayle

  2. Great piece, Katie.

    I’ve been thinking a lot about that Halsted Radical days, and how that was the standard protocol and ‘choice’ for so many years, something we now look back on and think of as barbaric. Sure, it was based on the best information we had at the time. But after it became institutionalized it was very difficult to dislodge even when we had better information.

    And it points to your message that, “Our instinct may be to cut and run, but the truth is that there is still a whole lot we don’t understand about the disease.” We do think with our guts. And often rationalize those decisions. That’s what makes it so hard to think about systematic analyses of social problems. Those analyses should NOT be from the gut. We know that on one level, but if they don’t match our frame, it can be really hard to make sense of it.

    Thanks for sharing this.
    Gayle

  3. Thank you so much for sharing your story, Katie. I also want to thank you for sharing your well-chosen, brilliantly-worded opinions.

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