Breast cancer with little kiddos- Part 5: My story is good, bad and ugly

My dad has been very supportive and came to help with the kids after surgery, which was critical.  Recently, he has complimented me for the great decisions I made in advocating for my health. He understands my situation better than anyone else, he was also there through my mom’s disease and passing.  He knows this like I know it, from the traumatic N of one.  The thing is though, compliments and praise about my medical decision making instantly make the underbelly of my skin want to peel away and run from my innards.  I know that is such a lie. I want this to be a post about advocating for yourself as a young woman, because that is how you advocate for your young family.  I want there to be a hero, me, who saved the day for her small children.  But sadly, I just can’t get myself to bite into that story; it tastes so sourly disingenuous.  In contrast, this story reflects the nebulous role of fate and the hard reality of health disparities in America. 

I am a physician, so I am trying to understand the data behind what I am dealing with.  I feel like an atheist astrophysicist who is smacked by the creative hand of God when science illuminates the infinite abyss, and the impossible unlikelihood of the whole thing. The risk of a 36-year-old getting breast cancer is 0.2%. But that is the tip of the iceberg. Women diagnosed with breast cancer under age 40 are diagnosed at later stages of disease because we don’t get screened and nobody thinks we have cancer, so there is a delay in diagnosis. Also, women with breast feeding changes have impossible lumpy breast exams. Tumors in recently pregnant women tend to be large, these women are usually diagnosed by symptoms of advanced disease. My son is 1 years old, I stopped breast feeding less than a year ago. The data suggests that for breast cancer patients at my age, there is only a 3% chance of being diagnosed as early stage as I was.  The math on that is pretty astounding: 3% x 0.2% = 0.006% chance of this happening to me. You have a 0.008% chance of getting stuck by lightening, which is notably more likely than the situation I find myself.  Basically, I won the super shit lottery and also won the most valuable Powerball of all time- at the same time!  WTF!

This is how I got here: My mother was diagnosed with stage III breast cancer at age 50, which is the earliest age at which you are put into the “low risk” category for genetic breast cancer. Her physician recommended against genetic testing; she did not get it. She passed away 2 years later.   4 years after that, I had nipple bleeding while breast-feeding my oldest son Aden.  Anyone who has nursed knows nipple bleeding is super common and nothing to write home about.  I very halfheartedly mentioned the nipple bleeding to my Gyn/Ob doctor at some point. The doctor was less halfhearted. She got a mammogram that resulted in a biopsy which showed a very common benign tumor with zero risk of cancer. Done. But somehow, I had gotten an appointment scheduled with the breast surgeon that was never cancelled, so I went.  I didn’t need to see her, was all she said, but she serendipitously referred me to the high-risk clinic at UVA. I am not sure exactly why this happened. Was it the intuition and diligence of UVA physicians? The fact that I am a physician? Mistake?  Either way, the physician in the high-risk clinic, after I had negative genetic testing, offered me early aggressive screening. Reading the guidelines for screening now, I realize this was a very aggressive clinical decision. There are multiple validated and expert consensus guidelines that all would have suggested I didn’t need screening, and just one that recommended offering it.  Many good clinicians would have recommended against screening until I was 10 years younger than my mother’s age of diagnosis, or age 40. Given the aggressive characteristics of my breast cancer, I strongly suspect I would have presented with late stage metastatic disease if I had started screening 4 years later at age 40.  The physician at the high-risk clinic literally saved my life because she recommended more aggressive screening than most of her great colleagues would have.  I am a physician, and I didn’t understand this at the time.  I was just a leaf blowing in the wind.  Getting early screening was an unlikely miracle.  This required the perfect collision in time and space of a benign tumor, nipple bleeding while breastfeeding, my mother’s sacrifice and an aggressive doctor in a high-risk screening program that exists only at large academic medical centers, of which I happen to work at and live only 15 minutes away from.  Like I said, I feel like an astrophysicist examining the chances of cosmic existence.

The rest of the story is somewhat morose in implication.  It illustrates the soul-crushing reality of the health disparities equation, of which I get to occupy the very top. I am overwhelmingly grateful, but this is also laced with the nausea of knowing your undeserved and unfair privileges. After my screening MRI showed cancer, I had my biopsy done and pathology read by a specialized team of breast cancer experts at a large academic center, again, which is 15 minutes from my house and where I also happen to work. As a physician, I easily understood everything about my diagnosis and treatment options. I seamlessly made treatment decisions and got to pick my surgical and oncology teams.  My surgery was done in a timely manner, and I have been able to easily and responsibly manage my pain and minor post-operative healing issues. I speak the language of a physician. I am White. I am not poor. I am disgustingly educated.  I have a supportive community of family and friends who represent similarly privileged demographics, they can financially afford to take time from work and family to help me.   I have every unfair advantage, and the data says it makes a difference.

Research shows that there are two main groups that are at much higher risk of breast cancer recurrence. Women under age 35 and African American women.  Younger women have more aggressive tumors and are diagnosed at later stages, this doesn’t explain everything- but this does leave an impression of common sense.  But for African American women, the prevailing theory is that health disparities, unconscious bias and access to care might mostly explain the increased risk.  There are similar disparities driven by socio economic status and education. Living in a rural community versus near a specialized medical center is also a notable inequity.  Care is not equal in America. I know I should not expect complete equipoise, but it still seems we can do better. The questions of how, even for just more equitable access to high risk early screening for young women, are swirling in my brain.

While I got cancer when it seemed impossible, I also had an improbable diagnosis made and timely, world-class treatment.  I can tell you a story about advocating for myself and my children, but it would be a cheap exercise in cognitive dissidence.  The uncapturable grace and mercy of God, or fate if you see it that way, combusting with the privileged side of the health disparities equation brought me here today.  As you can probably tell, I am still trying to jerk my head out of the washing machine of what just happened to me. This is a lot to process.  I am still melting with unspeakable gratitude and disbelief, it’s hard to stand up straight and know that I know something.  Tonight, I am going to sit outside on a lawn chair and watch my children play together innocently in the sprinkler while the sun sets behind the blue ridge mountains. This makes sense. This is where heaven meets earth.   

JOY!

2 thoughts on “Breast cancer with little kiddos- Part 5: My story is good, bad and ugly

  1. I am in awe of you! Your writing is amazing. Real. Thoughtful. Eloquent. You are a hero. Thank you for sharing your story and being you!

    Like

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