Summer News Round-Up
We've seen a lot of really interesting headlines cross our desks in just the past week or so and wanted to share some of these with you in one place for easy digestion:
"Some adult survivors of childhood cancer unconcerned about health" (Reuters, 6.25.18) -- A new study published in Cancer suggests that 3-in-10 childhood cancer survivors are not worried about their health, with 40% unconcerned about developing a future cancer. These findings worry researchers and advocates who know that childhood cancer survivors are at significantly elevated risk of future health problems. "A lack of concern may be appropriate in some survivors, but in others it may prevent them from engaging in risk-reduction activities such as recommended screening tests and healthy behaviors," said lead study author Todd Gibson of St. Jude.
A deeper dive: We've seen some solid parent commentary on social media, breaking down the many issues at play here, including the young age of kids at diagnosis, the fact that this is a self-reported study (which comes with significant scientific limitations), systematic barriers to quality care and reliable insurance coverage, a lack of trust in the medical system, and the desire to just live in the moment after overcoming traumatic childhoods. One parent commented that these survivors are tired -- "tired of being sick, tired of being diagnosed with yet another problem."
"Up to half of childhood cancer survivors will develop hormone disorders" (The Endocrine Society, 6.29.18)
The Endocrine Society released a Clinical Practice Guideline with recommendations for diagnosing and managing pituitary and growth disorders in childhood cancer survivors, stressing the importance of early detection and life-long screening. While nearly 50% of childhood cancer survivors are expected to develop an endocrine disorder in their lifetime, those who received radiation therapy to the brain are at an especially high risk. Endocrine disorders can include thyroid disease, testicular dysfunction, or diabetes.
"Where Childhood Cancer Hits Hardest" (US News) / "Childhood cancer rates highest in Northeast, new CDC map shows" (NBC News) -- A new CDC report maps out childhood cancer incidence rates across the country, revealing higher rates in the Northeast (New Hampshire, DC & New Jersey) and lower rates in the South (South Carolina and Mississippi). There are likely multiple factors accounting for the geographic disparities, including genetic predisposition, race and ethnicity, environmental exposure (air pollution, secondhand smoke, etc), and enhanced detection in certain geographic regions due to better access to care.
"Knowledge of these geographic differences in childhood cancer incidence can be used to enhance provider awareness, treatment capacity, survivorship care, and cancer surveillance," the report says.
Media Education Opportunity: Many parents are understandably upset by NBC's tagline in reporting this story, "Cancer rates are so low in children it's hard to say why there's regional variation," which makes childhood cancer sound incredibly rare. While we're always glad to see national media talk about childhood cancer, we hear that concern and frustration. As one parent put it: "This is what America will read and ignore pediatric cancer even further." We encourage families to use these opportunities to respectfully educate media outlets about childhood cancer -- and our shared view that 16,000 children a year is far too many.
"Meet Lola, a Girl Who Gave Her Final Days to Science" (National Geographic, 7.2.18)
We were moved by the beautiful images and story shared by photojournalist Moriah Ratner this week, who spent almost a year and a half with 12-year-old DIPG fighter Lola and her family.
We thank National Geographic for highlighting the devastating reality of a DIPG diagnosis.
"I Lobbied on the Hill for Student Cancer Patients & Here's My Advice If You Want to Be a Political Advocate" (Bustle, 7.3.18)
Critical Mass recently held a lobby day for young adult cancer survivors to ask for support of H.R.2976, legislation that would allow for student loan deferment during active cancer treatment. One young adult survivor, Eva Taylor Grant, shared her list of 14 tips for anyone who takes to Capitol Hill to ask lawmakers to support legislation.
We applaud #12 - Take Time for Self-Care: "I hadn't spoken about cancer that much in one day since I actually had cancer," writes Eva. "Sharing with legislators in 10-minute chunks the most difficult parts of the experience was challenging. Luckily, my team was able to schedule in two 30-minute breaks. I was able to get caffeine, get some good nutritious food, and really sit and breathe. No matter how seasoned a lobbyist you are, you deserve to take the time in your day to care for yourself and prevent burnout."
"For Survivors of Childhood Cancer, Walk" (NY Times, 6.20.18)
A study published in JAMA Oncology finds that exercise improves the life expectancy of childhood cancer survivors -- even if it takes quite a few years for the survivor to begin an exercise routine. Unfortunately, researchers also found that about 70% of survivors studied are generally inactive. Exercise is beneficial for everyone but for survivors who have been treated with heart-weakening radiation or chemotherapy agents as children, heart-healthy activity like exercise is even more important.
"Scientists determined that the sweet spot for exercise, in terms of improving longevity among people who had survived cancer as children, seems to be about an hour of brisk walking almost every day."
Related: "Device may detect heart dysfunction in childhood cancer survivors treated with chemo" (American Association for Cancer Research, 6.21.18)