My Cancer Story begins on the beautiful, wild, west coast of Ireland, on the shores of Galway Bay.
Connemara country, where my late Mother was born 106 years ago. She immigrated to America….to San Francisco……worked…….wed……..and raised two sons. Several of her Galway siblings also made the trip to California.
On Thanksgiving Day, 1976, she was not feeling well. By mid-December, she was admitted to a hospital in Oakland, California with abdominal pain, profound weight loss, and impressive jaundice. Her bilirubin was 18. The normal bilirubin level is one, or less. On December 17, 1976, she underwent an operation, with the findings of an unresectable cancer of the head of the pancreas. Biopsies were done, and she had a by-pass procedure to alleviate the jaundice. She died at home four months later. She was 69 years old.
In March of 1980, her sister Anne, my Aunt Annie, was admitted to another hospital in Oakland with similar symptoms. She had abdominal pain and weight loss…..but no jaundice. In those pre-CAT scan days, she underwent an exploratory operation with the findings of a cancer of the tail of the pancreas with extensive metastases. She was closed up. She died five days later. Aunt Annie was 75 years old.
Some time in 1981, I heard that their brother Pat, my Uncle Pat, had cancer of the pancreas too. I do not know the details of his illness, but he did not live long.
In the spring of 1993, Dr. John Cameron from Johns Hopkins in Baltimore was the featured speaker at the Maine Medical Center in Portland, Maine……where I did my General Surgery Residency from 1972 to 1976. As many of you know, Dr. Cameron has revolutionized pancreatic cancer surgery at Hopkins over the past 40 years.
During a coffee break, I asked Dr. Cameron if there is any investigative study anywhere about families that seem to have a lot of pancreatic cancer. I though I had three relatives by this time. And Dr. Cameron put me in touch with Dr. Ralph Hruban, a pathologist at Johns Hopkins, and founder of the National Familial Pancreas Tumor Registry (NFPTR). Dr. Hruban was noting some family clusters of pancreatic cancer. Dr. Hruban sent me a questionnaire, and a big styrofoam box like the ones Omaha Steaks come in, some dry ice, and a tube to collect a sample of blood. I was to return it to Baltimore quickly. And I started receiving his yearly NFPTR newsletter. And I read every issue. And in one of those newsletters, in the early 2000s, I read that screening for pancreatic cancer was commencing at Johns Hopkins.
In December 2001, I heard that my cousin Martin in Tully, County Galway, Ireland was quite ill, and had been in Dublin for a big operation. With the usual Irish propensity for secrecy and denial, it took a while to find out what was going on. It turns out he had a Whipple procedure for a cancer of the head of the pancreas. The tumor was 5 centimeters in size, and there was one positive lymph node showing metastatic cancer. Perineural invasion was also seen on pathology. I thought to myself: ” I ought go visit cousin Martin and the rest of the Irish relatives I had not seen in 45 years.”
Plans were made to go in August 2002. I figured there might be a few non-rainy days in Ireland in August. And we would drive across Ireland to Dublin for Martin’s eighth month check-up with his Whipple surgeon, Dr. John Geoghan.
Seven days before my departure, my cousin Ann, that would be Martin’s sister, called and said her brother Tom was in the hospital in Galway………and he was jaundiced. A week later, Ann picked me up at Shannon Airport at 7AM and we drove to Galway City Hospital.
Tom’s skin color was pumpkin yellow. I met the attending, Mr. Proctor, and we went over his CT scan. There were extensive liver metastases from his cancer of the head of the pancreas. That afternoon, Martin, Ann and brother Michael and I drove to St. Vincent’s University College Hospital, Dublin. The next morning, we met Dr. Geoghan and his surgical team. Martin looked like he was failing. Labs were drawn, and a CT scan was scheduled……and that afternoon, we drove back across Ireland, to Connemara, with a visit to Tom in Galway City Hospital on the way.
I left Shannon on a Tuesday, August 27, 2002. It was a long, sad flight back to Boston on Aer Lingus.
On Sunday, October 6th, 2002, at 4 in the morning, I got the first phone call: Martin had died in a Hospice in Galway. Forty-six days later, I got the second phone call. Martin was 56. Tom was 61.
Later that week, I called Johns Hopkins (JH).
My appointment at JH was in late November 2002. I met Dr. Marcia Canto……a gastroenterlogist, with specific interest in EUS……that’s endoscopic ultrasound. I met a lot of people….investigative nurses, geneticists, radiologists. EUS was done one morning—-there were some subtle changes in the pancreas. Small, cyst-like lesions were found in the head and the tail of the pancreas. A repeat study was scheduled for six months. After that, I returned to Hopkins almost yearly .
In the summer of 2004, I learned that my Uncle Pat’s son, Leo, was quite ill in San Francisco. When the folks at Hopkins investigated my family tree, and obtained death certificates, they found out that Uncle Pat did not have pancreatic cancer. However, in July 2004, his son Leo had inoperable pancreatic cancer. He lasted a few months. He was Walsh family member number five.
On November 20, 2013, at 7AM, I met Dr. Canto again. She was her usual bubbly self….full of energy…..the proverbial Enerigizer Bunny. I remember two things she said that morning: she asked what I have been up to in my retirement. I was pleased to say that I had been on two Medical Missions in the past six months- one to Sucre, Bolivia, and one to Navisha, Kenya. And then she remarked: “How many years have you been coming here now? Ten?? Most people come for two or three times….then you never see them again…”
Soon thereafter, the EUS procedure started.
With the proprofol wearing off, I next saw Dr. Canto around 9:30AM. She didn’t have to say anything. I could see it in her eyes as she walked across the room: something significant had been found. She sat down and diagramed it out. A small lesion was found in the body of the pancreas. She biopsied it X 3, tattooed it, and was making plans for me to get a CAT scan, and see a surgeon.
The following morning, the CAT scan was done. At 1PM, I was sitting across the desk from the surgeon Dr. Christopher Wolfgang. He pulled the CAT scan up on his computer: “They don’t see anything….looks clean….” He continued: “The preliminary path looks like an adeno, or maybe an islet cell…” That would be an adenocarcinoma, or an islet cell carcinoma.
And the he suggested we consider a TOTAL pancreatectomy. “Pretty radical”, I thought to myself.
We looked at his OR schedule on his computer screen. It was pretty full. But Friday the Thirteenth was open! I wonder why.
“Put me on”, I said. “We’ll do something.” I returned to good old Alfred Maine……I did some reading. I chatted with some old trusted friends……..and I returned to Baltimore on Thursday, December 12th.
On Friday the thirteenth, Dr. Wolfgang and his team took out my entire pancreas, duodenum, spleen, omentum, and part of my stomach. And, as expected, I became an instant diabetic.
I did well post-op. I was out of there in eight days. Prior to leaving, Dr. Wolfgang and Dr. Hruban went over the all-important pathology report with me:
The tissue type was ductal adenocarcinoma (that is the most common tissue type, and the one with the worst prognosis among pancreatic cancers);
The tumor size: 7mm (0.7cm)………a pencil eraser is 6mm in size;
Lymph nodes: all 51 lymph nodes are negative for tumor;
Local extension: none;
Margins: uninvolved;
Venous or Lymphatic invasion: Absent;
Perineural invasion: absent.
Additional pathological findings: Multifocal pancreatic intraepithelial neoplasia (PanIN) highest grade 2.
Pathology report signed by Ralph Harvey Hruban, MD
I returned to Maine, and learned a lot about diabetes, and insulin, and pancreatic enzyme replacement.
And after discussion with folks in Baltimore, Boston, Portland and Sanford, Maine, it was decided that I take six months of Gemcitibine chemotherapy, just in case there are any sinister cancer cells lurking out there.
I am now one year and one day after what is hopefully curative pancreatic surgery. You know and I know that it would NOT have been possible without the tedious investigations and procedures and teamwork at the Johns Hopkins Hospital.
And THEIR work would not have been possible if it were not for private giving. Your dedication to the cause……….to find pancreatic cancer in its curative stage….well……your dedication saved my life. I am indebted to every one of you who took up that cause.
In conclusion, I want to mention something I have done this past year that was fun…….I mean, actually FUN!
In October, I was approached by a fine woman in Sanford Maine that directs a local theatre group in small stage productions. She was planning to do a “radio-show” version of Dickens’ “A Christmas Carol” on the weekend after Thanksgiving. And knowing my past experiences with the group, she wanted me to play Ebenezer Scrooge.
I thought it would be a great challenge, and great therapy for me too. But looking back at it, some of those practices with old folks like me sure can be painful! But the shows were great.
A few weeks prior to the show, the director wanted a “bio” for the program. I knew what I wanted to write, and program biographies are to be written in the third person:
“Ebenezer Scrooge (Thomas Collins)——“A Christmas Carol” is Charles Dickens’ classic tale of life in hardscrabble London in the 1840s. And with Ebenezer Scrooge, he tells the story of childhood deprivation, then a young man of promise. But lost love intervened, followed by greed , and miserliness. But with the help of Jacob Marley, and the visits of the three spirits, Scrooge was given a second chance at life……………
Tom has also been given a second chance at life……..and he will not squander it…………”
I am grateful for this chance to thank you for the magnificent contributions you have made in helping folks like me hopefully overcome one daunting disease: pancreatic cancer.
I end with Tiny Tim’s exhortation: God Bless Us………….Everyone.
submitted/ Thomas Collins, MD