For Douglas Engle, attitude plays a big part in coping with a stage IV cancer diagnosis. "Despite the 5-7% survival rate and all the doom and gloom, I would think, 'That isn't going to be me today.' I would lie in bed, think of my cancer, and send my mind to attack it," he says with a laugh. "It was a way of surviving the reality of the situation."
Doug was 37 years old when he was diagnosed with a rare kind of skin cancer called desmoplastic malignant melanoma (DMM)—the same melanoma that claimed the lives of his great-grandfather and several uncles and great uncles. "DMM is one that doesn't play fair," he explains. "It has no pigment and shows no signs of typical melanoma." Melanomas often are asymmetrical, have jagged or notched borders, are extra dark or varied in color, and are usually larger than the size of a pencil eraser.
Doug's journey with cancer began with what he believed to be an ingrown hair on his sternum. When it wouldn't go away, he went to a doctor who discovered a tumor the size of an almond. The mass was removed and tested benign, or noncancerous.
This tumor came back four times that year, progressively getting larger and more aggressive. Each time it was cut out and tested, the results were benign. Doug's doctors believed the masses were desmoid tumors—noncancerous, slow-growing masses that don't spread to other organs.
|Jon Huntsman Sr. visited with Doug during |
one of his hospital stays in 2006.
At the time, Doug's wife, Priscilla, was being treated for ulcers by a doctor who also specialized in upper abdominal and pancreatic bile duct cancers. At one appointment, she asked her doctor if he would mind looking at her husband's chest. "The doctor looked at me and immediately his eyes got wide," says Doug. "He said, 'I'm calling cardio thoracic surgery and getting you in.'" Doug had an appointment with a physician at an area hospital in a matter of days.
Doug was misdiagnosed two more times before CT scans revealed a mass in his lungs. After the mass was extracted, it became clear what was causing the tumors all along—DMM that had spread to the lungs. (All of Doug's relatives with this cancer died in their 30s and 40s because the disease was never accurately diagnosed.) "They told me, 'Full-court press—you go after this like you've never done anything before,'" says Doug.
When Doug's doctors told him his cancer was stage IV, he was stunned. "First I thought, 'I'm a dead man.' Then I said, 'What do we need to do? What's the next step? Let's get this going because time is not on my side.'" A week later, Doug started a rigorous chemotherapy regimen at Huntsman Cancer Institute.
Doug's cancer came back twice after that—first in his chest tissue and then in his other lung.
During the two years he battled cancer, Doug had four months of chemo, six weeks of radiation therapy, two lung surgeries, and four tumor extractions. He's also had all of his skin tissue from nipple line to neck and from shoulder to shoulder removed twice. His final surgery was performed at MD Anderson in Texas, where he participated in a clinical trial.
Beating the odds for his cancer type and stage, Doug has been cancer-free since December 2007. Today, he enjoys racquetball, playing the Scottish bagpipes, and being involved in the lives of his five children. "Knowledge is now the empowerment for my kids. They know they have a 50% chance of getting DMM and if they ever need to they can say, 'This is what my dad had. Make sure you test for it.'"
"I can't say my outlook on life has really changed," Doug says about being a cancer survivor. "But, it is more sensitive and real. I look at my kids and appreciate the time I have with them."
|Scott Franson looks forward to |
many cancer-free years after
receiving a liver transplant to
treat bile duct cancer
(cholangiocarcinoma) in 2008.
He says his wife, Brenda, helped him
through rough parts of his treatment,
reminding him that "time passes."
When Scott Franson developed bile duct cancer (cholangiocarcinoma), his life could have been over in his early forties. But thanks to the liver transplant protocol developed by surgeons in Huntsman Cancer Institute's Hepatobiliary Cancers Research Program (HCRP), at age 46 he's looking ahead to many cancer-free years.
"The liver has functioned great since my transplant," Scott says. "I've had a few ups and downs, but the liver has functioned perfectly. I'm in follow-up to make sure everything's okay, and I take anti-rejection medicine."
The transplant has made it possible for Scott to return to his graphic design teaching position at BYU Idaho in Rexburg. "Being able to return to teaching and be with the students again is the best," he says.
Scott received his liver transplant in 2008 under a University of Utah Transplant Section clinical trial. Since then, the clinical trial protocol has been made the standard of care for bile duct cancer patients whose disease is found at an early stage. The protocol included pretransplant chemotherapy and radiation, staging surgery to check that the cancer had disappeared, and further chemotherapy until a transplant became available.
"For me, cancer did not turn out to mean that my life was immediately over. The treatment was tough. Radiation was hard. But there was always a sense of hope from the caretakers, the doctors, and the support staff. There was a whole team of people, right from the beginning, and they all cared," Scott says.
He adds, "My wife has been an awesome caretaker. She's been there to help me through everything. One thing she says to me frequently is 'Time will pass. Time passes' to remind me that challenges and pain will pass with time."
Scott's experience with cancer leads him to offer this advice: "I don't want to give false hope to people. When they tell you that the chance of survival is two percent or something like that, it's scary. But you just have to continue living and loving and going on."
20 Years and Counting
|Pat Bearnson, Cancer Survivor|
"I consider myself the luckiest woman in the world," says cancer survivor Pat Bearnson. Diagnosed with a rare peripheral nerve sheath sarcoma in the summer of 1991, she wondered if she'd ever live to see snow again. "I've seen snow now for 20 seasons," Pat says.
After initial rounds of chemotherapy and surgery to remove the tumor from her leg, a chest X-ray revealed masses on her lungs. Her primary oncologist consulted with Patrick Beatty, MD, at the University of Utah's then newly opened BMT unit, and the doctors decided a bone marrow transplant would be the best course. Pat was the unit's thirteenth patient to receive a transplant. "I'm so thankful that I got that treatment when I did—that it was available for me. I think if [the cancer] had happened much earlier, I wouldn't have survived."
After recovering in the hospital for five weeks, Pat returned home. The cancer, however, never returned. She felt lucky to be alive, but was also sad that the chemotherapy had left her menopausal before she'd had a chance to have children.
About a year after the transplant, Pat had earned her medical degree and was working as a gynecologist. Soon after, she started experiencing the same symptoms she heard about from her pregnant patients. She took a pregnancy test at her clinic, and after the results turned up positive, she immediately had an ultrasound. It revealed she was nine weeks along. "It was just amazing," she says. "I had thought I would never be able to get pregnant." Her son, now 18, is in his first year of college.
"I'm blessed in so many ways," Pat says. "I'm so happy to be here and to get to be a mom and to have this gift of a son who is just such a joy. It's a really great life."
|Bearnson addresses the crowd at the hospital expansion dedication ceremony|
In 2001, 29 year-old Jim Heath enjoyed a life of little worry and responsibility. He had moved to Flagstaff, Arizona, to spend his summer hiking and biking. "I could not have been happier, fitter, or more carefree," he says. In July, his summer of fun was cut short when a massive grand mal seizure put him in the emergency room.
Jim had a stage I anaplastic astrocytoma, an aggressive type of brain tumor. He needed immediate surgery to remove it.
Two years later, he was back in the hospital with another tumor. Jim then started chemotherapy and radiation therapy.
Throughout his trials with cancer Jim's family was very involved, traveling away from their home to support him in person. In 2004, Jim moved to Utah to be closer to them. He was referred to Huntsman Cancer Institute (HCI) and Howard Colman, MD, PhD, Director of Medical Neuro-Oncology and associate professor in the Department of Neurosurgery at the University of Utah School of Medicine.
By 2008, Jim's treatment seemed successful. He was starting to get used to "clean" MRIs. "With each new clean result the thought of a potential regrowth became almost unthinkable." Jim was ready to move forward with life and was engaged to his future wife, Colleen.
That year, Jim and Colleen were devastated to learn that the cancer had returned. The tumor had progressed to a stage IV glioblastoma, for which Jim needed a rigorous chemotherapy regimen. A stroke in the ICU after surgery made recovery difficult and he was left with some residual cognitive deficits and physical weakness.
Today, Jim has completed chemo and his regular MRIs are clean. The 10-year cancer survivor likes to hike with his wife and dog, and he continues to live his life surrounded by family.
For Jim Heath, having faith in your doctors and support from your family is key to a successful cancer battle. "I have undergone each stage of my battle with this trust and reliance," he says, "and by taking one step at a time, always believing that I would pull through."
|BYU head basketball coach, Dave Rose, was diagnosed with a neuroendocrine pancreatic cancer in 2009. It is the only form of pancreatic cancer than can be successfully treated.|
Call Him NED
Anyone who cares about basketball in Utah knows Dave Rose is a winner. After all, he has a 159-45 win-loss record as head coach of the BYU men's basketball team. He's been named Coach of the Year by the Mountain West Conference three times. But maybe some have forgotten—since his dramatic diagnosis in 2009—that he is also a pancreatic cancer survivor.
"I've found in the last two years, talking to hundreds of people, that everyone's cancer story is unique to them," he says. "Mine is pretty rare."
In the summer of 2009, Rose began feeling so lightheaded on a flight from California to Las Vegas that he couldn't sit up. Paramedics took him off the plane and straight to the hospital, where doctors removed a large tumor that had spread to his spleen from the tail of his pancreas. Pathology reports showed it was cancerous.
After Dave had recovered enough from surgery, he was airlifted to Huntsman Cancer Institute (HCI), where further tests revealed more specific results: a neuroendocrine tumor, an extremely rare form of pancreatic cancer—and the only form that can be successfully treated.
"It was a lucky thing for my long-term prognosis. It's what they call a slow-growing, indolent tumor," he says. "Still, because the cancer had spread to my spleen and some nearby lymph nodes, I will never be considered 'cured.'
"Dr. Scaife calls me NED, and she says I'm lucky to be him," Rose adds. "NED means 'no evidence of disease.' That's what I'm hoping for every six months when I come in for a MRI scan. So far, so good." Rose's oncologist is Courtney Scaife, MD, a member of HCI's Gastrointestinal Cancers Program.
Rose says that living with cancer has made him "way more appreciative of everything," including his family, his job, where he lives, and what he does. "There's not a day that goes by that I don't feel fortunate that I get to do what I'm going to do that day."
Because of the challenges he has faced with this disease, Rose finds he is much more aware of other people's challenges. Even though he and his wife, Cheryl, worked with the Children with Cancer Christmas Foundation (a group that provides Christmas presents and ongoing support groups for families who have children with cancer) for years before, he's more aware of how cancer affects everyone. "Parents, grandparents, brothers and sisters—cancer affects the whole family, and then some."
"It's hard to be positive when you're dealing with pancreatic cancer," Rose says. "Sometimes the numbers get so depressing that it can affect your approach, but I think the most important thing is to live with hope."
MaryAnn Gerber loved the way she looked with a tan. As a teenager, she visited a tanning salon almost every week. A few years later she noticed a pink mole on her face. The look of it bothered her, so she visited a plastic surgeon to have it removed, only to discover it was a malignant melanoma, the most deadly form of skin cancer.
“I was vain about having a tan and that same vanity drove me to the plastic surgeon when I noticed a mole. Vanity almost killed me and vanity saved my life.”
|MaryAnn Gerber, Cancer Survivor|
Gerber was diagnosed with stage III melanoma at the age of 24. Since no one in her family had a history of skin cancer, she and her physicians believe tanning led to her disease. Typically, melanoma at such a young age is caused by a genetic mutation. “My grandfather was a farmer and worked out in the sun all his life, but he wore hats and long sleeves. He never got skin cancer but I had it as a young woman—I’m certain because of tanning.”
Two surgeries later, Gerber is left with a six-inch scar that runs down her left cheek. “It used to bother me, but now I wear it as a badge of honor. It gives me the opportunity to talk about skin cancer and sun safety when people ask me about it.”
Gerber is part of an outreach team at Huntsman Cancer Institute that calls itself “Ten Young Women against Skin Cancer.” All the group members were diagnosed with skin cancer at early ages. All believe unsafe sun exposure and tanning led to their disease, and now they speak out to discourage other people, particularly young women, from tanning. They also promote sun safety, which includes wearing sunscreen, sunglasses, hats, and long sleeves when outdoors for long periods.
“I’m not that much older than the girls I speak to, and they can see that if it can happen to me, it can happen to them. Nearly losing your life for a tan is definitely not worth it.”
Skin Cancer Screening Clinic Provides 10 Years of Free, Lifesaving Care to Utahns
The words “free” and “health care” are an uncommon pair, but at Huntsman Cancer Institute (HCI) they make a great match during the annual Skin Cancer Screening Clinic, a free full-body exam performed by experienced physicians that is available to the public.
Spring 2009 marked the screening clinic’s tenth anniversary. The first clinic took place shortly after HCI opened its doors. Organizers expected about 100 people at the event, but more than 800 arrived.
“I came in about 30 minutes before it was supposed to start and the lobby was full of people,” remembers Glen Bowen, MD, director of HCI’s Melanoma Patient Care Services. “I started at 8 a.m. and left at about 6 p.m. without a break, and we still had to reschedule a couple hundred patients.”
Skin Cancer Screening Clinic Staff and Volunteers
Originally a walk-in clinic, these days organizers schedule appointments to ensure the clinic is well-staffed for the average of 500 people who participate annually. It’s a true community event—medical students, nurses, dermatologists, and many from rival medical groups across the valley work together for the common good. In the last 10 years, doctors screened more than 5,000 patients and caught an average of eight melanomas each year.
It’s an important health-care screening, especially when you consider the risk of developing skin cancer is 115 times greater if you live in Salt Lake City than if you live in New York City. “Utah’s rates of melanoma have increased steadily in the past 10 years,” says Sancy Leachman, MD, PhD, director of HCI’s Melanoma and Cutaneous Oncology Program. “Our high altitude combined with the genetic predisposition of our fair-skinned population makes melanoma one of the key cancers to tackle in Utah.” The clinic provides an invaluable service to the community—particularly for the uninsured. Donna Branson, HCI’s director of Patient and Public Education, says patients are always grateful. “At the 2009 clinic, a woman told us she came in the previous year and doctors found a stage I melanoma. She was sure the screening saved her life.”
Because of the Skin Cancer Screening Clinic’s success, HCI physicians and volunteers now offer a similar event, the annual Head and Neck Cancer Screening. It’s part of HCI’s commitment to not only find a cure for all types of cancer, but prevent them from ever happening.
To know Dov and his family (wife Tara, and children Matan and Siena) is to love them. Dov grew up in Oregon, Idaho, Iowa, Indiana, Italy, and Israel. He has a black belt in Tae Kwon Do, is a published author, has a bachelor's degree in English, and works as a laboratory supervisor.
Dov has become an advocate for cancer research while undergoing treatment for stage IV colorectal cancer at HCI. Read Dov's story here.
In this 10 part video series, cancer survivor Dov Siporin introduces himself and tells stories about how he has dealt with cancer.
*Caution: Some videos may contain strong language and material*
Jared Swan was a freshman at the University of Oregon and looking forward to college life when one day his hands suddenly went numb and he started to stumble. “I had three grand mal seizures,” says Jared. “The next thing I knew, I woke up in the hospital and my parents were there.” Jared’s doctors discovered a brain tumor caused his seizures. After doing what they could to help him, Jared relocated to Utah and went to Huntsman Cancer Institute (HCI) for treatment.
“We had an open clinical trial we thought was perfect for this type of tumor. It’s an experimental treatment where catheters are placed into the brain and the drug is infused directly into the tumor,” says Randy Jensen, MD, PhD, an HCI neurosurgeon and investigator and associate professor in the Department of Neurosurgery at the University of Utah School of Medicine.
“All the other doctors had pretty much given up on me,” Jared says. “It was great just having new hope.” Jared was one of the first to undergo this new treatment and doctors were optimistic it would help. “Guys like Jared are the reason you keep doing research because we want everybody to have a good outcome and overcome such tough diseases,” says Jensen.
The treatments worked and Jared has been cancer free for seven years. “Now I have a job, go fishing, and do everything I enjoy. There’s a ton of people that I just couldn’t thank enough. Never give up, that’s all I can say.”
During fourteen months of breast cancer treatment, Emma E. Houston worked with many Huntsman Cancer Institute (HCI) nurses as she received a combination of surgery, radiation, and chemotherapy. Her opinion about the care she received “HCI should go around the world training people how to take care of cancer patients,” she says.
After her surgery, Emma spent a week at Huntsman Cancer Hospital. “The nurses were on top of everything my family and I needed,” she says. “They must see a lot of pain and anger in their work, yet through it all they maintain a great attitude.” The infusion nurses were “lifesavers” in working through difficulties while always keeping Emma’s comfort in mind. “They warmed my arms and gave me blankets during treatments,” she says. But the nurses’ warmth went even deeper.
“I love high-heeled shoes,” Emma says. “Even when I was sick enough that my husband brought me for treatments in a wheelchair, I wore them because they make me feel beautiful. The infusion nurses always noticed—‘I love those shoes’—every time.”
“I know people show up in my life for a reason,” says Emma. “The people at HCI helped me get through the experience of cancer. I could relax and enjoy the benefits of their expertise.”
Cancer first tested Linda Hill’s mettle when she was just 19 years old. Since then, cancer has taken a lot—her breasts, colon, thyroid, and spleen—but it will never take her sense of humor. A single parent of seven, Linda has transformed loss into laughter. Following breast cancer surgery, she fashioned a T-shirt that reads, “Of course they’re fake—the real ones tried to kill me!” So began a creative outlet for her battle with cancer: a T-Shirt company named “somuchmore.” Grown from laughter and a gift for one-liners, somuchmore has captured such zingers as “mastectomy (mas tek’ te me) n 1. A procedure to help a woman find a real man” and “I lost my colon, but I’m still full of crap!”
Linda donates $2 from each sale to Huntsman Cancer Foundation in support of Huntsman Cancer Institute’s research. While joy and mirth surround Linda, her purpose is serious. She says, “Cancer does not define us. It wasn’t my colon that makes me love to bake. It wasn’t my breasts that make me crazy and outgoing. And it wasn’t my thyroid that gave me faith in God.” Linda has many one-liners yet to write, declaring “I am so much more than cancer.”