Survive and Thrive Newsletter - Winter 2013

Survive and Thrive Newsletter - Winter 2013

Dear Friends,

This edition of Survive and Thrive looks at the challenges adult survivors of childhood cancers face. With a recent study suggesting that nearly all of adult survivors will face a chronic disease following their childhood cancer diagnosis, it is important to know what conditions to screen for and to try to maintain a healthy lifestyle to minimize additional risks. Through better understanding undiagnosed conditions, survivors and their care teams can hopefully catch diseases at an early stage to maximize the benefits of intervention.

Thank you again for coming out to our Healthy for the Holidays gathering last month. It was great to see many of you in person and we hope you found the information shared helpful.

Wishing you well,

K. Scott Baker, M.D.
Director, Survivorship Program

Karen Syrjala, Ph.D.
Co-Director, Survivorship Program

Chronic Health Conditions in Adult Survivors of Pediatric Cancers

By Alexandra Sifferlin, article originally appeared in TIME Heathland

A study of over 1,700 childhood cancer survivors found that 98 percent of the participants had at least one chronic disease such as new cancers, heart disease or abnormal lung function.

The research, published in the Journal of the American Medical Association, presents a challenging picture of life after cancer. It reminds us that there is more to be done to improve the lives of young cancer survivors. Conducted by St. Jude Children’s Research Hospital, it provides a glimpse into St. Jude’s LIFE program, a two- to three-day initiative that brings long-term childhood cancer survivors back to the hospital for regular check-ups throughout their adult lives. The goal is to monitor adult survivors to better understand the mechanisms that promote surviving and thriving. The former patients undergo various checks and screenings including basic health exams, blood tests and X-rays.

The authors report that by age 45, 80 percent of survivors have a life-threatening, disabling or serious health condition. Sixty-five percent of the survivor participants who were at risk for lung problems after their treatment had abnormal lung functions, and 61 percent of former patients at risk for neurocognitive issues had endocrine problems in areas of the brain like the hypothalamus. Another 48 percent had memory difficulties, and 56 percent of survivors had heart abnormalities.

“It is not surprising, but it helps quantify what our fears were in this population,” says study author Dr. Melissa Hudson, the director of the St. Jude Division of Cancer Survivorship. “We have known for many years that adults who were treated for cancer in childhood have a higher risk for health problems, and these health problems appear to increase as they age.”

The study population is one of the oldest groups of survivors to be studied. Participants ranged from 18 to 60 years old, though the average age was 33. Their average time from cancer diagnosis was 26 years, with a range from 11 to 48 years from diagnosis.

Previous studies looking at cancer survivors’ health have typically relied on surveys instead of actual check-ups in the doctor’s office. “We know we are underestimating the amount of disease,” says Dr. Hudson. “This comprehensive study allows us to get down to what are the undiagnosed conditions that are hopefully in early stages so intervention will benefit them.”

The researchers say their findings support tailoring treatments to patients so that exposure to radiation from chemotherapy is kept to a minimum. Patients should have regular check-ups throughout their lives and maintain a healthy lifestyle in order to not exacerbate their risk. “Physicians and healthcare providers should be advocating for healthier lifestyle practices for anyone they see in their practice, but it is particularly important for childhood cancer survivors because they have already had treatments when their organs were more vulnerable that put them at risk for types of diseases we see in aging populations like high blood pressure, osteoporosis, high cholesterol, etc.,” says Hudson.

Screening programs like the one at St. Jude’s not only identify health issues early in these at-risk patients but also help doctors identify which screening processes are most helpful and aid in characterizing what patient profiles are at a higher risk for certain diseases.

“Our greatest findings were that these patients had diseases that were not identified,” says Dr. Hudson. “This type of care really understands their risk for disease in the context of their previous cancer history.”

Patient Profile: AnneMarie Kvinge

Annemarie Kvinge, an outdoor enthusiast, has always lived a very athletic lifestyle. From alpine touring during the summer to taking a long jog on weekends, Annemarie prides herself on keeping an active lifestyle.

“When I share with others that I had cancer as a child, people are shocked,” Annemarie said. “It’s hard for them to comprehend that someone who looks so health and athletic now could have battled a chronic disease earlier in their life.”

It was on the soccer field, at the young age of 13, that the Kvinge family first noticed a large bump on the side of Annemarie’s leg. After undergoing a few months of testing, Annemarie was diagnosed with stage III synovial cell sarcoma. She then faced a rigorous regiment of chemo, radiation, and surgery, forcing her to take more than a year off from school to complete her treatment.

Upon finishing treatment, Annemarie realized that she now faced with an entirely new set of challenges and fears. Would her cancer come back? When would people in her community move past thinking of her as just being the “cancer” kid? How do you shape who you are as a person when dealing with such a traumatic event as a child?

While it took Annemarie a few years to sort through her fears, she ultimately feels that cancer can deepen someone without defining them. She wants to be known for her accomplishments throughout her life, not just the disease she survived.

“I’m thankful for my body’s resilience and think it’s important to treat my health as a gift,” Annemarie said. “I’m passionate about sharing my story so that others (especially kids) realize that it does get better and that they will have that opportunity to have long hair again and pursue their passions be it athletic or otherwise.”

Annemarie discovered SCCA’s Survivorship Clinic after finishing her treatment at Seattle Children’s Hospital. She appreciated the holistic approach the clinic took with her, discussing what she wanted checked, the emotional impact cancer can have, and physical issues she should watch out for in the future.

“An ER doc might not understand why I am incredibly concerned with a pain in my knee, but at the Survivorship Clinic they take the time to understand your history and treat you as a whole person, not just for the symptoms you may have had at one moment in time,” she said.

Annemarie feels that participating in a survivorship type program is an important part of any cancer treatment plan. Recognizing that everyone’s journey is different, she believes that survivorship can help many who need that extra support transitioning from patient to survivor. Even many years post cancer treatment, Annemarie continues to face long term side effects that come up. In fact, just recently Annemarie found out through the Survivorship Clinic that she will likely need a knee replacement soon. Through its close work with physicians, the Clinic is able to provide Annemarie with the resources and support to expedite the process as smoothly and successfully as possible.

“I remember turning 15 and being so happy that I made it to another birthday, then 18 came and I continued to be surprised,” said Annemarie. “Just this year I celebrated 11 years of being cancer free, a milestone that I would have never have imagined would happen.”

Winter Newsletter Events and Community Education 

Survivorship Program Facebook Page and Blog

We are expanding our communication efforts to increase awareness of our program and connect with survivors through our new Facebook page and blog. If you have not done so already, stay connected by liking us on Facebook and following our blog.

Patient and Family Advisor Program

The Patient- and Family-Centered Care Program is looking to recruit Seattle Cancer Care Alliance survivors and families to collaborate with our staff on policy and program development by offering their unique perspective on committees, focus groups, and short-term projects.

Click here to find out more about the SCCA Patient and Family Advisor Program.