Living with Cancer (18)
Firsthand Account: Playing Against All Odds
"No doctor—and no patient either—should ever stop hoping," says Janet Gill, a cancer survivor and Huntsman Cancer Institute (HCI) patient. "You might be the lottery winner, no matter the odds."
What happened to Janet seems miraculous, considering when she was diagnosed with pancreatic adenocarcinoma in June 2010, her doctors said the odds of surviving another eight months were extremely slim. Today, she keeps busy at her home just outside Twin Falls, Idaho, with a "big, huge" vegetable garden, a pair of goats that will soon be giving milk, and 25 chickens that will soon be laying eggs.
After her diagnosis, Janet could not have surgery immediately because the tumor encroached on a major blood vessel. She had several weeks of radiation and chemotherapy at HCI to reduce the tumor's size—about that of a walnut when she was diagnosed—so surgery could be attempted.
"Use of radiation in pancreas cancer is controversial," says Christopher Anker, MD, the HCI radiation oncologist on Janet's cancer care team. "But, in combination with chemotherapy, one of the most established reasons is to help kill and potentially shrink the tumor so all the remaining disease can be removed at the time of surgery."
Janet was prepared for surgery at HCI later in 2010, but in the operating room it was determined the procedure could not be completed. "They found some lesions on my liver that they thought were metastases [cancer spreading from the original site], and the tumor was still encroaching on the
vein," Janet says. "They closed me up and sent me home. They basically said, 'We think at the very most you might have two years to live.'"
Janet was not about to accept that answer. She had too many reasons not to give up—for example, her teenage son and another older son with special needs. And her husband, Dan, also refused to accept it. "He was continually saying, 'You've got to keep fighting. This can't be the end,'" Janet says.
Under the care of a medical oncologist in the Boise area, she began a new course of chemo in January 2011. Days before starting chemo, "out of the blue" Janet says, "Dr. Anker called to see how I was doing." She told him about her next round of treatment, and he asked her to send him copies of her post-treatment CT scan.
"I called because I expected Janet would be on her way to starting further chemo around that time," says Anker. "I never forgot our original goal of getting Janet to her Whipple [pancreas surgery]. I understood she wasn't done fighting this tumor, and I could see how well she handled radiation and chemo. I felt confident we could get her back to the operating room for a second chance."
With the second chemo round completed in April 2011, Janet had a CT scan to assess her cancer status. As promised, she sent those scans to Dr. Anker at HCI.
"The follow-up scan couldn't have looked better," says Anker. "The tumor seemed to have disappeared, and all the liver lesions appeared to be cysts." When he presented Janet's scan for review at the cancer care team's next treatment planning conference, the team agreed Janet was a good candidate for the Whipple.
Janet was scheduled for surgery with HCI surgeon Courtney Scaife, MD, on May 9, 2011, the day after Mother's Day. After the surgery, pathology reports showed no invasive disease was left in the removed tissues. Since the surgery, Janet gets follow-up CT scans every three months. All of them have been clear of cancer.
Janet says, "You never know if you're going to be in the percentage that's successful, no matter how small that percentage is." Dr. Anker agrees: "Janet's story is proof of why patients should not lose hope, even when faced with intimidating odds."
Coping with an Extended Hospital Stay: Tips from a Huntsman Cancer Institute Patient
Any stay in the hospital is fraught with fear and anxiety for both the patient and family members. When hospitalization becomes lengthy, life can feel like it is spinning out of control.
Fred Roth knows firsthand. When diagnosed with acute myeloid leukemia (AML), he spent 90 days in the Huntsman Cancer Institute (HCI) hospital that included 25 days of high-dose chemotherapy before a bone marrow transplant (BMT).
Fred focuses on the positive aspects of his long-term stay. "I feel lucky to have been treated at HCI," he says. "Not only was I in a top-notch cancer facility, I was in the hands of incredibly dedicated and caring health care professionals."
During the course of his treatment, Fred and his wife, Kathy quickly discovered they had a part to play in his recovery. They decided to make a plan.
"Feeling sorry for ourselves was not going to help me get better," says Fred. "So we devised our plan of the "Four Stays" that helped us get through it."
Here is what Fred and Kathy suggest for patients and their families facing a long hospital stay:
1. Stay Positive
- Avoid self-pity. It will not change your situation and it could slow your recovery.
- Make every day count. Dwell on the things you love, not your illness.
- Take it one day at a time. Things change fast with illnesses like AML, including infections, drug reactions, and donors who renege on their pledge. A leap to panic is often a waste of energy, and inaccurate. Decide to not consider a negative outcome when a more positive outcome might be in store.
- Have a strategy for the bad days...and there will be bad days. Focus on things that make you happy. For example, Fred loves nature and enjoyed using headphones to listen to soothing music while watching nature outside his window. Looking at family photo albums, listening to books on tape, and watching movies may also help lift spirits.
2. Stay Involved in Your Treatment
- Keep a journal of all medical activities, including the stop and start of all medications and your reactions. This will facilitate conversations with your doctors and nurses, and just as important, it will make you an active participant in your care rather than a passive victim of your illness.
- Consider it your job to help the doctors make you well. Eat to keep your energy up.
- Have a plan to help you navigate what lies ahead. "HCI personnel were always helpful and willing to allow us to be partners in my treatment," says Fred.
- Be open to a mentor, someone who has been down the road you're traveling. Broaden your support team and build a hospital community.
- Add comforting touches to your hospital room. Things like throw pillows, family photos, children's artwork, and get-well cards all go a long way to make your surroundings more cheerful and comfortable.
3. Stay Active and Busy
- Go for a walk or get some other form of exercise if you're able. Fred felt well and energized during most of his hospital stay, so he regularly walked laps around the hallways. In fact, Fred's doctors attribute his speedy recovery to his being in excellent physical shape.
- Get out of bed every day. Create an area for eating or working by setting up a small table or laptop stand.
- Try to keep a routine. This provides a sense of control and consistency during your stay.
4. Stay in Touch
- Communicate with family and friends. Use e-mail, blogging, and social media as instant ways to connect with loved ones.
- Be conscientious about acknowledging messages and communicate on a regular basis. When family and friends don't hear from you, they wonder and may worry.
- Talk with your nurses, doctors, and other members of your health care team. They are there to care for you and help you get well. Even after you go home, send updates to let them know how you're doing.
Other Helpful Tips
- Because of Fred's compromised immune system, he and Kathy found it helpful to have a system to sanitize items that were brought to the hospital.
- Fred found that some gifts, while well-intentioned, can be problematic. Certain plants, foods, and personal care products aren't allowed due to a compromised immune system. Talk with your health care team if you have any questions or concerns about what is OK.
- Other helpful items: soft T-shirts and a fleece jacket or vest, books and DVDs help to pass the hours, and meaningful items such as photo albums or encouraging messages from loved ones. Fred's message to all those with an extended hospital stay: "We're all in this together," he says. "Good care, good vibes, good wishes, good luck."
Huntsman Cancer Institute invited several cancer patients from all age groups to share their cancer experience.
"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."
In 2001, Brad Aagard was diagnosed with melanoma on his lower lip. It was removed, and "we thought we'd gotten it," Brad says. A few years later, the melanoma spread to his right lung. He also developed a tumor in his brain unrelated to the melanoma. The tumors were removed through surgery, but Brad's doctors warned him the cancer was likely to return and gave him 12 months to live.
It would be four years until the melanoma showed up again, this time in his pancreas. Brad's local oncologist, Stephen Wallentine, MD, of Provo's Central Utah Clinic, referred him to Huntsman Cancer Institute (HCI) and Ken Grossmann, MD, PhD, a medical oncologist with HCI's Melanoma and Cutaneous Oncology Program.
"The cancer was so advanced, it was not a pretty picture," Brad says of his condition at the time. "I really was in a lot of pain. I felt like I was dying."
Brad describes Grossmann as being "cautiously optimistic" about his chances for survival. Grossmann presented two treatment options: a chemotherapy drug called ipilimumab or biochemotherapy. Biochemotherapy combines chemotherapy with immunotherapy, a treatment that stimulates the patient's own immune system.
Biochemo can be very toxic to the patient and can cause potentially dangerous side effects such as drops in blood pressure, fluid retention, and irregular heartbeat. "This requires careful monitoring and treatment when side effects occur," says Grossmann. That means biochemo must be given while the patient stays in the hospital, and it can only be given at expert centers with teams who have specific training in managing these side effects—such as HCI. In fact, HCI is the only facility in the state of Utah to offer biochemo.
Grossmann told Brad and his wife, Brenda, that the ipilimumab could have better long-term success, but that biochemotherapy would produce a faster response. Because the cancer was in such a critical location and was progressing quickly, Grossmann recommended the biochemotherapy despite its likely side effects. "We came together as a family and decided biochemotherapy would be the way to get some quick relief," says Brenda.
Brad underwent four treatments that each lasted a week. "The treatment was pretty intense," he says. But it ended up being the right choice. Today, Brad has no evidence of disease. "Biochemotherapy saved my life," he says. "It feels wonderful."
"We feel like we've been given a miracle," Brenda adds.
Since 2007 (when Brad was given 12 months to live), he and Brenda have taken a trip to Germany—something on Brad's bucket list—and have seen seven grandchildren born.
The Aagards attribute Brad's survival to HCI being "the top of the line in cancer treatment," says Brenda. Brad adds, "We're really grateful to Dr. Grossmann and to HCI. Without them, I wouldn't be here."
Grossmann further credits this success story to the collaboration with Wallentine, Brad's local oncologist, and is hopeful cooperation with other community oncologists continues. "Sharing patients between centers is essential to offering the best possible care for them and will no doubt enable more stories like this to emerge in the years to come," he says.
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."
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.