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The Boy I Never Knew


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The ASCO Post is pleased to reproduce installments of the Art of Oncology as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays. To read more, visit jco.org.

At the invitation of a former patient, Vivian, and her 15-year-old son, Joshua, I attended my first patient-sponsored medical conference. The clinking of coffee cups quieted as Joshua began the first lecture of the day. He took the podium with poise and addressed the assembled 300 cancer survivors, physicians, and researchers.

It all began when my parents were not able to get pregnant for years. Finally, they decided to see a fertility specialist, but an unknown mass was found. Surprised and shocked, they waited a month to see if the tumor would go away on its own. It didn’t, and surgery was recommended immediately. To make matters worse, they required my mom to take a pregnancy test before surgery. She was pretty angry about that one. Years of not being able to get pregnant, and they wanted to confirm that one more time.

Yep—mass confusion. The words “you’re pregnant” came next. My mom was informed that the baby would have to be aborted so surgery could occur to remove the mass. The only other option was to wait until 4 months’ gestation. I didn’t even know what the word gestation was until a few weeks ago.

Although this narrative was familiar to me, the youthful narrator was not. Joshua’s words immediately catapulted me back to 2002, a time when he was little more than a zygote. His mom, Vivian, was simultaneously diagnosed with an ovarian mass and a pregnancy by her local obstetrician. Although he recommended termination of the pregnancy and immediate surgery, she delayed treatment for 2 months because of her strong desire for pregnancy and her low risk of ovarian cancer.

At 16 weeks’ gestation, the pregnancy had progressed as expected. Unfortunately, the mass also grew. Vivian, now consenting to surgery, negotiated the goals of the procedure with her obstetrician: remove only the affected ovary while maintaining the pregnancy. Perform no surgical staging that may risk the developing fetus. The procedure went according to plan; however, Vivian was diagnosed with a ruptured and unstaged clear cell carcinoma of the ovary.

Challenging Conventional Wisdom

IT WAS THEN that I first met Vivian, who, quite frankly, rocked my world. Early in my career, I squirmed as she pushed the boundaries of medical standards of care, elevated the role of patient autonomy, and confronted long-held beliefs that acuity and timeliness of cancer care trumped all else. Yet her decisions then led directly to this moment. Had she succumbed to conventional wisdom, I might never have known Joshua’s eloquence.

As her gynecologic oncologist, at our first consultation I discussed the changing conventional guidelines and the difficulties of maintaining a healthy pregnancy while treating ovarian cancer. Although terminating the pregnancy was still an option, it was no longer required. I recommended modified surgical staging to identify microscopic metastases. Chemotherapy should follow. We could make attempts to preserve the fetus, but they would come secondary to the needs of the mother.

My dispassionate assessment ran headlong into Vivian’s fresh perspective of a mom-to-be balancing treatment-related risks for both herself and her unborn child. My data-driven treatment plan, bolstered by years of conventional wisdom, presumed that dead women gestated poorly; yet it crumbled at Vivian’s insistence of advocating for the dyad.

“My dispassionate assessment ran headlong into Vivian’s fresh perspective of a mom-to-be balancing treatment-related risks for both herself and her unborn child.”
— Richard M. Boulay, MD

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So, I reviewed the sparse data sets informing the conventional wisdom. I telephoned experts whose opinions were softened compared with the rigid language of my texts. Even though I was less assured, I still recommended modified surgical staging. Chemotherapy could then be given, but the long-term effects of fetal taxane exposure were unknown. Alternatively, delaying surgery and chemotherapy until a planned early delivery was a possibility, although a very real risk of disease progression existed.

Vivian unhesitatingly and wholeheartedly took on the risks of delayed treatment. More important for me, as her physician, she took these risks knowingly. She fully understood her decision may result in death; but for her, the decision was about preserving life. Again, we waited. The pregnancy progressed normally. Magnetic resonance imaging and tumor markers revealed no cancer.

“His mere presence so confounded my cancer treatment plan that I discussed trading his existence for a better chance of preserving hers.”
— Richard M. Boulay, MD

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And while getting ready for a New Year’s Eve party, I received a call regarding Vivian’s onset of labor at 34 weeks. Childbirth is, among other things, inconvenient. The obstetric team delivered the neonate. I performed the modified staging surgery. A stay in the neonatal intensive care unit (NICU) for the newborn and chemotherapy for the mother followed. Mother and son both suffered, but clinging to one another, survived, recovered, and ultimately thrived.

Joshua continued.

Surgery occurred at 4 months. The fetus survived. The mass exploded upon removal. My mom was diagnosed with clear cell epithelial ovarian cancer at the age of 30, and she was pregnant with me. Treatment was required. She opted to wait until after delivery.

So, I was 5 weeks early, but I got out just in time to be a tax break. I guess that was the first gift I gave to my mom. On New Year’s Eve 2002—I decided to make my entrance. Again—not planned, but why start now? Nothing about me was planned. My mom underwent more surgery and staging that night. I too was a bit problematic with lung deficits. Needless to say, my mom and I had an extended stay in the hospital.

My mom began treatment when I was able to behave/ breathe on my own. Once I was released from the NICU after almost a month, I stayed by her side during multiple rounds of chemotherapy. I hear I was the life of the party in there.

More Than a Decision Point in an Algorithm

WHAT A BEAUTIFUL place to end a story: a grateful mom, a happy baby, and a relieved physician. But 15 years later, a boy approaches a podium with a “P.S.,” adding a facet to this story that I had never previously considered. This positive pregnancy test, come zygote, come fetus, come neonate, come baby, became Joshua. And until now, he had existed in my mind as no more than a decision point in an algorithm, as one of two rapidly growing cellular masses within his mother’s true pelvis—one desired and the other not—competing for space and blood supply. His mere presence so confounded my cancer treatment plan that I discussed trading his existence for a better chance of preserving hers. After all, Vivian was the patient. But with some literature available to support her decision to maintain her pregnancy, I was comfortable proceeding with the pregnancy in situ. However, when she rejected the recommended surgery and chemotherapy, opting to wait until delivery, I felt adrift in doubt, fearing the consequences of inaction.

It was not until this moment that the impact of Vivian’s decisions, made 15 years ago, began to settle upon me, then through me—gently at first like a whisper—which in time demanded to be heard. My decision tree, scientific and statistical, balancing risks and benefits for Vivian, suddenly became both equally burdened and enlightened by the young man addressing this crowd. I had never, until this day, considered his thoughts and opinions on the life his mother so selflessly gave him. In fact, I had never considered his life at all. At that time, to me, Joshua was a fetus. A potential life. Today, he stands before me powerfully realizing the beginning of that potential.

Joshua closed:

Here’s what I do remember. Through probably some of life’s most difficult moments—our bond never broke. Don’t get me wrong—I test her at times. I mean I am 15…, but I am the person I am today because of her. While she has taught me many lessons, I want to close with three I ask you to remember.

1. Never say I can’t.

Do you know what happens when you say I can’t in my house? It isn’t pretty. It’s worse than the cancer card. It’s the scar. Yep. Shirt up. Scar exposed. The words “did I ever say I can’t have a baby and cancer” pour from her mouth. Everyone in my house knows—they can, or they will die trying. Never say I can’t.

2. Include us.

We already know when something is wrong. You are not protecting us by your silence. Talk to us. Tell us your fears and let us know how we can help. There are some days I wish my mom wasn’t so honest, but in the end, not knowing would be so much worse. While difficult and at times a bit traumatizing, I wouldn’t have preferred it any differently. It has helped create and shape the person I am today.

3. Connect.

Connection is key, my mom tells me. I tell her not to worry; I am well connected…feel free to add me on Snapchat or Instagram. I have experienced it first-hand. The more awareness, the more lives saved. The more lives saved, the more moms [who] are able to raise us. It is now my honor, to introduce to you, my mom.

Embodiment of a Mother’s Courage

JOSHUA LOOKED up as his last words faded into a standing ovation. And though he spoke to the collective experience of the hundreds present, I couldn’t help but sense a personal connection to the boy I never knew. A boy, whose confident, assured narrative contrasted with my own recollections of indecisiveness and doubt. A boy whose mother’s desired treatment plan, although it was different from prevailing medical wisdom, proved equally legitimate. The son of patient autonomy addressed me today. The youth, borne of selflessness, challenged me today. The young man, embodying a mother’s courage, moved me today.

At the time this article was published in the Journal of Clinical Oncology, Dr. Boulay was practicing at St. Luke’s University Health Network, Bethlehem, Pennsylvania.


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