Cancer Family: The Search for the Cause of Hereditary Colorectal Cancer
330
Cancer Family: The Search for the Cause of Hereditary Colorectal Cancer
330Paperback
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Product Details
| ISBN-13: | 9781504928687 |
|---|---|
| Publisher: | AuthorHouse |
| Publication date: | 08/29/2015 |
| Pages: | 330 |
| Product dimensions: | 6.00(w) x 9.00(h) x 0.69(d) |
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Cancer Family
The Search for the Cause of Hereditary Colorectal Cancer
By C. Richard Boland
AuthorHouse
Copyright © 2015 Clement BolandAll rights reserved.
ISBN: 978-1-5049-2868-7
CHAPTER 1
In Medias Res (1969-70)
Ancient epics often began their story in the middle of things — in medias res. Actually, the Latin phrase as written implies a more active situation, as the protagonist is thrust into the midst of things, and is immediately in motion. He recognizes that he is in a problematic situation, and must take action. To explain the situation, the narrative first must look back, which provides the historical context, and then move forward. So my story begins — in the middle, and into the midst.
In September, 1969, I started Yale Medical School in New Haven, Connecticut, about four hours by car east of Endwell, New York, where I had lived since age four. Endwell was the next town west, just a few miles down the Susquehanna River, from Johnson City, where I was born. I came home for Thanksgiving after my first three months of medical school. It was November, 1969; my first vacation break from this new journey. The sixties were almost gone, a tough time during which the world flipped upside down. I had previously gone to college about seven hundred miles west. Unlike that journey, New Haven to Endwell would mean easy trips home. I was entering the profession of my father; time to get to know him better. That felt good.
The events of the 1960s had a polarizing effect between fathers and sons. However, as a medical student, the edginess of the sixties no longer stood between my father and me. Pursuing my father's profession created a transformation in me. Dad was very excited to hear about what they were teaching in medical school. "What's new? How are you enjoying anatomy (one of the first courses)? Can you stand the smell of the cadaver room? What are they teaching now?" Very positive exchanges. On the Sunday morning after Thanksgiving, as I readied for my return from upstate New York to Connecticut, and I gave Dad a hug just. He winced with pain.
"What's the matter?" I asked.
"Oh, it's nothing".
Mom interrupted, "This has been going on for some weeks now and he won't see anyone."
I encouraged him to have it evaluated. I left, with school on my mind, not knowing what this portended.
There were about three weeks between the Thanksgiving and Christmas breaks. Yale Medical School was filled with a lot of people just like me. It was fun but competitive, and I loved the course material. Each day was intense but I couldn't get enough of the information. It was not an overload, just a load, and it came effortlessly. I had been back at school about three weeks when my life began to change on Wednesday morning, December 17. I was in a microbiology lab, and we were at the bench discussing how many viruses and bacteria could live on bars of soap. A teaching assistant came to me with a message from the Dean of Students' office: "call home". I found a pay phone, and called. Mom told me that Dad was in the hospital. His pain had worsened, and he couldn't stand up straight. He was evaluated, and they found colon cancer. An operation was scheduled for Friday.
I headed back to upstate New York the next morning. It was a gray morning, as I headed west on Route-17 through the Catskill Mountains. I was totally preoccupied with what was happening at home, and was stopped (with about ten other drivers on a long downhill stretch) for going seventy-five in a seventy zone. I tried to tell the state policeman that I had a special circumstance, but he handed me a clipboard, told me to fill out the form, and dashed to the person stopped behind me. He spent about five seconds with me, collected his fine, and went to the next driver. Never mind. I had just passed through a small-town toll gate.
I got home safely and went directly to Wilson Memorial Hospital in Johnson City, the hospital where my mother and all four of her children had been born. Dad was the Chief of Pediatrics. Mom intercepted me in the hallway outside his room. They found two colon cancers — one at the junction of his small and large intestine, and another further down. Surgery was planned for the next day. I was confident he would be cured by the operation; that's what we did with modern medicine. The surgeon opened him up, but couldn't remove anything, so he sewed him back up. The tumor appeared to involve the liver. I spent the night after surgery with him. They advised him to go to Roswell Park, the cancer center in Buffalo, New York, for specialized surgery. So, off he and Mom went, and I caught up on the day of the planned surgery. In mid-February, the Roswell Park surgeons also realized that the cancer was too advanced, and after eight hours of surgery, that operation was also aborted. He was sent home to die for the second time in his forty-nine years. He died on July 26, 1970, leaving me with a medical mystery to solve.
CHAPTER 2Cancer in the Family (1970)
There had been occasional, quiet talk in the family about Dad's "illness" during his time in the Army. That discussion was not specifically suppressed, but there was never a lot said about cancer in the family. I knew from family reunions — mostly funerals and weddings — that discussions of health were carried out privately. All other matters could be vigorously discussed in groups: political discussions, opinions, grand family legends, and recollections. But when we were with Dad's family, it would have been easier to bring a live rattlesnake into the room to perform tricks than to openly ask who in the family had died of cancer.
One of the unspoken reasons for fearing any discussion of a familial predisposition to cancer was the nasty history of eugenics that contaminated Western science from the late Victorian era until the end of the Nazi political experiment in 1945. Darwin's explanation for the generation of species in the biological world was a polarizing concept, one that pitted the scientific world against traditionalists and the religious world. Some extrapolated these concepts from the biological into the social realm. The term "eugenics" was coined by Francis Galton, a polymath cousin of Darwin. He extended Darwin's concepts and proposed that it would be possible to improve the human condition by encouraging the breeding of the "best" of the human race and by discouraging breeding among the "less gifted" among us. Essentially, he thought humankind should use the same breeding techniques that were used in agriculture and animal husbandry to produce better corn, more milk, or tastier beef. From the late nineteenth century through the first half of the twentieth century, research studies were published suggesting that the breeding of bad human "stock" gave rise to murderers, alcoholics, rapists, and morons — terms used by eugenicists to describe what they needed to eliminate from the gene pool. (This is reviewed in detail in a monograph entitled DNA by James Watson, published in 2003)
In the United States, programs of sterilization of a variety of unwanted classes of people were undertaken, driven by multiple statutes passed by individual states as well as the federal government. Immigrants were particularly targeted, supported by a body of odiously inept research studies. The Nazis took this much further. Within three years of the passage of eugenically driven laws in 1933, 225,000 people were sterilized in the name of protecting the German race. Of course, the Holocaust represented the absolute depths of the concept. This type of thinking became unpopular, and largely declined after the end of World War II for obvious reasons. However, during the first half of the twentieth century, anyone who feared the social consequences of a possible genetic defect did so on the basis of solid evidence.
Not long after Dad's death, I was on a short trip with my mother and maternal grandmother. They were in the front seats of the car; I was in the back. That was the first time I had heard about Mom and my grandmother going to the army hospital near New York City to bring Dad back to Johnson City after his repatriation from Italy. He was on a stretcher, as if he had been a wounded soldier. He had lost so much weight that my mother couldn't recognize her husband. He tried calling to her as she passed by but was too weak to be heard. They eventually found him, and horrified, took him away without official permission. Mom mentioned that Dad's next older sister, Alice, was ill with cancer at that same time, and died of cancer shortly after Dad's operation in 1946. She knew that Dad's father had also died of cancer when Dad was just five. There were other cancers as well. I realized it was time to find out what was actually happening in the family.
It took some digging, but when family members knew I was serious about this, they opened up and began talking to me. I visited the Boland family homestead in Reading, Pennsylvania, visited several of the local hospitals, and took notes from medical records there. Gradually, a coherent picture began to emerge.
Dad was one of thirteen siblings (Figure 2). By 1970 when I first started to contemplate this problem as a first-year medical student, seven of the siblings had either died of cancer or had been operated on for a tumor in the colon or uterus. Everyone had developed his or her first cancer by age forty-five. Five had developed a cancer before age forty. Some had more than one cancer. Dad's father — my grandfather — had developed colon cancer at age twenty-seven in 1907, which he survived with a partial colon resection. He later died of a second cancer in lower portion of his colon or rectum at age forty-six. His father — my great grandfather — had also died of colon cancer. As far back as I could trace, every one of my male ancestors had died of colon cancer, and not one had reached the age of fifty. Moreover, as I gathered the medical records on these cancers, all of the initial cancers had developed in the proximal colon, the upper part that is attached to the small intestine. Ordinarily, one expected that only a quarter to a third of all colorectal cancers would occur in that region. Also, the women had been very susceptible to uterine cancers. When I got those medical records, all had involved the endometrium (the inner lining of the uterus), and none of them were cervical cancers, which would have been more common during that era.
I sought help from the professors at my medical school, and they told me that there was no form of hereditary colorectal cancer except for a rare disease called familial adenomatous polyposis. That was a different problem, and the records indicated that no one in the family had it. I had to make a "deep dive" to figure out what was happening. I searched back in time as far as I could, and collected medical records and family recollections to make sense of what was happening. I realized that this was not going to be an armchair exercise.
CHAPTER 3The Boland Family (1870-1926)
The Bolands are a classic American immigrant family. I traced my earliest ancestor, John Boland, Sr. to a small town, Feakle, in County Clare Ireland, where he lived and died in the mid-nineteenth century. Yes, the village is pronounced "fecal". I have no details about his life or his family.
First generation American-born Bolands
His son, my great-grandfather John Boland, Jr., was born in Feakle, Ireland in 1854, and immigrated to the US in 1870 at age sixteen, as a consequence of one of several famines in Ireland. He entered the country through Hoboken, New Jersey and made his way to Harrisburg, Pennsylvania where he worked for the Pennsylvania Railroad, presumably as a physical laborer. In 1876, he married Margaret Kenny, born in 1853, who had also immigrated to Pennsylvania from County Clare, Ireland. They had known one another in Feakle, and corresponded until she arrived in America to marry. John, Jr. died in 1895 at age forty-one following a failed operation for colon cancer in a Philadelphia hospital. He had seven children — six boys and one girl (Figure 2).
The first two died in childhood. The third-born was my grandfather, Thomas Nicholas Boland, Sr. He was born in 1880 and lived until 1926. He developed a colon cancer in 1907 at age twenty-seven, had half of his colon removed, and lived nineteen more years. He then developed a second cancer in the lower colon or rectum, and died in 1926 at age forty-five of metastatic cancer, leaving thirteen children.
The youngest child of John Boland, Jr. was Clement Boland (my great-uncle), who was born in 1891 and died fighting in France just prior to the armistice of World War I, in November, 1918, and just shy of his twenty-seventh birthday. There are a couple of family legends surrounding his death – from being gassed in the trenches to being murdered by the Germans for not providingthemwithmilitaryinformation.Iwillneverknow.Mostnotably,my father was the next male born in the Boland family, and he was given Clement's name by my grandparents to commemorate his death in battle (Figure 3).
Second Generation American-born Bolands
My grandfather, Thomas Nicholas Boland, Sr lived a life of successful upward mobility in an America that rose up on the backs of its immigrants. He married Mary Gertrude Flanagan, of Harrisburg, Pennsylvania, who was born in 1882. Her family called her "Gert" or "Gertie". She apparently hated the name. Thomas and Gertie had thirteen children. He worked in a pig iron factory in the tiny town of Robesonia, Pennsylvania starting about 1903 at age twenty-three. The factory was called "The Furnace", and was situated between a railroad line (for coal and ore) and Furnace Creek.
Thomas was hard-working, and clever enough to be given the task of monitoring the chemical properties of the pig iron, measuring the content of iron, carbon and other elements. He became the factory foreman, and was called "the chemist" of The Furnace. He was a highly respected man, which was hard to come by as the Bolands were among the only Catholics in this staunchly German-Lutheran part of "Pennsylvania Dutch" country. Apparently, some degree of competence and geniality trumped prejudice. However, one of my aunt's strongest recollections had to do with bigotry that the family occasionally faced. Thomas served on the borough council of Robesonia, an elected position, and eventually served as council president, reflecting his stature in the borough.
The Chemist
I once found a picture of my grandfather sitting on the front steps of the furnace in Robesonia (Figure 4), and recalling that he had been a chemist, asked my Uncle Tom "What college did Grandpa go to?"
He looked at me askance and said "He didn't go to college. No one went to college in those days." (Tom had incidentally become editor of the Reading Eagle, the local paper, without a college education.) "They called him the chemist because he did the analyses of the pig iron before they sold it." So, a chemist he was.
One of the benefits Thomas gained through his position as foreman and chemist at the furnace was the privilege of living in the Taylor Mansion, just a short walk from the factory. Apparently, the superintendent of that era chose not to live in the mansion. So, the Boland family moved in, and eventually there were as many as fifteen in the house — which easily accommodated them — as well as a second family. It was a beautiful large house surrounded by a lawn and wrought-iron fence (Figure 5). However, when Thomas developed his second cancer and died in 1926, his wife Gertie had to move with ten of her thirteen children to the small borough of Mount Penn, about eighteen miles east of Robesonia and essentially in Reading, Pennsylvania. One of my aunts said that she remembers with bitter tears first losing her father, and then having to leave the mansion for cramped quarters in Mount Penn. This was a sad time for everyone. The family was essentially evicted from the home (after all, it was 1926), and some of the local residents were upset at the insensitivity of that act. They informed anyone interested in moving into the mansion of this point, and the house sat empty for many years.
(Continues...)
Excerpted from Cancer Family by C. Richard Boland. Copyright © 2015 Clement Boland. Excerpted by permission of AuthorHouse.
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Table of Contents
Contents
Prologue (Summer, 1946), ix,Chapter 1 In Medias Res (1969-70), 1,
Chapter 2 Cancer in the Family (1970), 4,
Chapter 3 The Boland Family (1870-1926), 7,
Chapter 4 Clement Richard Boland, Sr: from Robesonia to Endwell (1926-1970), 20,
Chapter 5 C. Richard Boland, Jr., Endwell, New York (1947-1965), 46,
Chapter 6 Notre Dame to Yale Medical School (1965-69), 69,
Chapter 7 Life-Changing Events (1969-1970), 81,
Chapter 8 Learning to be a Doctor (1970-1977), 90,
Chapter 9 From Running to Fighting (1977-1979), 118,
Chapter 10 Learning to do Research (1979-84), 128,
Chapter 11 Michigan, Molecular Biology and Cancer Genetics (1984-1990), 151,
Chapter 12 The Sabbatical (1990), 161,
Chapter 13 Solving Lynch Syndrome (1990-1994), 177,
Chapter 14 The Transformative Years (1994-2001), 205,
Chapter 15 Cracking the Mystery: Trudy, Rita, Bert and Yan (1994-2000), 222,
Chapter 16 Matt and Jennifer (2001), 233,
Chapter 17 The Test and its Impact (2001-present), 246,
Chapter 18 Suzanne (2006-2015), 255,
Chapter 19 Where is Everyone Now? (2001-2015), 267,
Epilogue: Genetic Variation and Adaptation, 285,
Appendix: The History of Lynch Syndrome (1895-2013), 289,
Acknowledgements, 315,