Living with Cancer (12)
Children categories
 |
| 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."
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."
Make a Connection – Find Strength with Others
Even though a lot of patients receive support from friends and family, connecting with others who have similar experiences can improve quality of life and enhance survival. Peer mentoring, such as support groups and networks of patients and caregivers, offers many benefits:
- Give patients and their loved ones a chance to talk about their feelings and work through them
- Help patients and their loved ones deal with practical problems, such as problems at work or school
- Help patients and their loved ones cope with side effects of treatment
- Help children or family members of patients address changes in roles, relationships, and finances, and how to support the person who has cancer
Online support groups, social networks, and chat groups can be helpful for people who live in rural areas, have trouble getting to meetings, or prefer not to go in person. While online groups can provide valuable emotional support, those using them should always check with their doctor before making any changes based on what they read or hear from another person's experience.
Retreats, camps, and outdoor excursions for cancer survivors and their loved ones can provide unique mentoring and bonding experiences for all who attend.
Find a list of Salt Lake City area support groups here. For additional information or resources, please contact these Huntsman Cancer Institute services:
- The Cancer Learning Center has hundreds of free brochures and over 3,000 books, DVDs, and CDs available for checkout. Talk one-on-one with trained and caring staff, or send an e-mail for answers to your cancer questions.
- Our Patient and Family Support Services professionals offer HCI patients and their families emotional support and resources for coping with cancer and its impact on daily life.
- The Linda B. and Robert B. Wiggins Wellness-Survivorship Center offers support groups, classes, and activities aimed to increase the quality of life and well-being of HCI patients and their families.
Dov has become an advocate for cancer research while undergoing treatment for stage IV colorectal cancer at HCI. Read Dov's story here. Watching Dov In this 10 part video series, cancer survivor Dov Siporin introduces himself and tells stories about how he has dealt with cancer. | |
Videos | |
Meet Dov Siporin. He has some stories to tell. | Dov Siporin Story Part One. |
Dov Siporin Story Part Two. |
|
|
|
|
|
|
|
| |
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.
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.”
Just three weeks after their wedding, newlyweds Dan and Melanie Hedlund were in for some startling news—Dan had osteosarcoma, a rare form of bone cancer.
“It was pretty shocking,” says Dan. “We were still in the honeymoon phase of life and excited about starting our lives together. We didn’t know what to expect.”
A second opinion brought Dan to Huntsman Cancer Institute (HCI). “I feel comfortable putting my life in the hands of these doctors any day of the week,” he says. “They’re not just good at what they do, they’re passionate about what they do.”
Because of his age and strong overall health, Dan’s physician, Lor Randall, MD, director of Sarcoma Services at HCI and an associate professor in the Department of Orthopaedics at the University of Utah, chose an aggressive treatment regimen. Dan says it’s been rough, but he’s up to the challenge. “He’s not trying to extend my life by a couple of years, he’s trying to cure me. Because I was so young, we didn’t have to be conservative.”
Dan has undergone surgery and chemotherapy, and has responded well to treatment. He and his medical team are optimistic about his prognosis.
“I haven’t been that worried cancer would take my life. I’ve tried to get busy living. Even if I only had a one-percent chance, somebody has to be that one percent. Why not me?”
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.”
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.”
