Treatments for childhood cancers have improved to the point that 5-year survival rates are over 80 %.
However, one group has failed to benefit from these improvements, namely children who die so soon after diagnosis that they are not able to receive treatment, or who receive treatment so late in the course of their disease that it is destined to fail.
A study published in the Journal of Clinical Oncology explores this challenging population, finding that death within a month of diagnosis is more likely in very young children and those from minority racial and ethnic groups even independent of low socioeconomic status.
The study uses a large national database to find that the rate of deaths within one month of diagnosis has been previously under-reported in clinical trial data, with early deaths from some paediatric cancer subtypes up to four times as common as had been implied by clinical trial reports.
Those who have survived cancer are often left with a different appreciation of life, even children who have not yet lived much of theirs.
Survivors can also, however, become very anxious about their health; about whether the cancer will return; about the visits to the doctor for the next how many ever years, and then when the regular visits stop.
Another problem is that unless you have had cancer or have cared for someone who has survived cancer, there is NO WAY you can understand what a cancer Survivor goes through for the rest of their life! Most people seem to think that having cancer is a temporary situation and that once you are through the treatments it means that you are cured and life should just continue as per normal – this is FAR from the truth!
Cancer is in effect a revolving door, and at any moment a scan could land a Survivor right back in the territory of Active Cancer Treatment
“What good does it do to treat people and send them back to the conditions that made them sick?”
This is the question Sir Michael Marmot, Professor of Epidemiology and Public Health at University College London, said he asks himself repeatedly, during a speech he recently gave at Wits University regarding why health is not simply a matter of access to medical care.
Sir Michael is an expert in health and inequality, and says that as societies around the world become more unequal, the gap between levels of health widens.
“Social injustice is the biggest threat to global health and a radical change in society is needed if we really want people to live long healthy lives,” he added
The Professor, who has conducted research on health inequalities in communities across the world, compared a boy growing up in the affluent suburb of Greater Roland Park in Baltimore, United States to one growing up in the Upton Druid Heights neighbourhood in Baltimore’s inner city.
Even though they grew up a mere few kilometres apart, according to Marmot the boy from Roland Park can expect to live to the age of 83 whereas the one living in the inner city, will likely die 20 years earlier at the age of 63.
According to a recent study conducted by researchers at the American Cancer Society and published in the journal Cancer, the high ever-rising cost of cancer treatment is affecting prescription drug adherence.
The study, which used data from the National Health Interview Survey, found that patients with cancer were far more likely to stop taking their medication or switch it for financial reasons than patients with other diseases.
Rising deductibles, co-payments, co-insurance and tiered drug formularies all contribute to the increasing percentage of cancer care cost that patients must now pay for out of pocket. This can affect survivors’ overall wellbeing, lead to poorer treatment choices, have a negative effect on outcomes and cause higher medical expenses down the line, according to the study.
“I would encourage patients to discuss their financial concerns with their care providers when making treatment decisions,” said Xuesong Han, Ph.D., strategic director, Health Policy and Healthcare Delivery Research at the American Cancer Society, and author on the study.
In an effort to help thousands of children who undergo cancer treatment each year, U.S. Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV) introduced the Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act. This bipartisan legislation will advance paediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance, and providing resources for survivors and those impacted by childhood cancer.
“Too many young people’s lives have been cut short by cancer. These kids and their families who’ve battled this disease inspire us to take action. The Childhood Cancer STAR Act will help young cancer patients and their families get access to potentially life-saving treatments, support survivors, and move us another step closer toward our goal of ending pediatric cancer,” said Senator Reed.
“This bipartisan legislation will continue the advances in research, prevention and care for our loved ones and families impacted by childhood cancer,” said Senator Capito. “The Childhood Cancer STAR Act gives parents and patients access to the information they need to make vital decisions about treatment and care post-treatment. This legislation will also give those who understand the unique needs of childhood cancer patients a seat at the table when decisions about cancer care are taking place.”
Unfortunately, for Survivors of Childhood Cancer, the risks to their health are not over by any means…
Various studies have shown that Childhood Cancer Survivors may be at increased risk of being obese due to the therapies they underwent to fight the cancer.
Among the strongest predictor of obesity in survivors was childhood obesity, which is also a strong predictor of adult obesity in the general public. Other obesity risk factors were age and childhood cancer treatment.
Obesity rates are especially elevated in Childhood Cancer Survivors who were exposed to cranial radiation, which is used to prevent or delay the spread of cancer to the brain.
In a study published online in CANCER, a peer-reviewed journal of the American Cancer Society, a team led by Carmen Wilson, PhD and Kirsten Ness, PhD, of St. Jude Children’s Research Hospital in Memphis, designed a study to estimate the prevalence of obesity among childhood cancer survivors and to identify the clinical and treatment-related risks for obesity in these individuals. The study also looked for potential genetic factors that might play a role.
A young nurse is giving hope to child cancer patients in the very place that saved her life. 22-year-old Jessica Lewis beat cancer three times as a child, each time at Wolfson Children’s Hospital in Jacksonville, Florida.
Lewis says her personal experience and her fight against childhood cancer inspired her to become a nurse and return to the place where it all began.
Jessica was diagnosed with Wilms Tumour, a form of kidney cancer, at the young age of 6, and was treated at Wolfson Children’s Hospital – she did not just beat the cancer once, but three times!
Recognised year after year as one of America’s Best Children’s Hospitals by U.S. News & World Report, the 216-bed Wolfson Children’s Hospital is a non-profit organisation. The Hospital relies on charitable donations to provide world-class care for all children in the region.
Carly Freels was a typical high school junior—she was a friend to many, she was an accomplished athlete, and she was looking forward to her senior year.
All this came to an abrupt stop when she was diagnosed with cancer. Her world changed overnight, but her faith never wavered.
In this short article, Carly shares some advice about coping with cancer and dealing with a friend or family that has been diagnosed with cancer, from personal experience.
Nearly 16,000 U.S. children and adolescents under the age of 20 are diagnosed with cancer each year. I am one of them. I was diagnosed with Hodgkin Lymphoma when I was 17 years old.
While nothing can fully prepare a person for cancer to enter their life, I want to share a few things that helped my family and me cope with my diagnosis.
In early January 2011, 9-year-old Gabi went ice skating with friends. She fell and landed rather badly on her right knee.
After a series of x-rays, in a lot of pain and with no improvement, she was put on crutches and scheduled for an MRI.
Gabi’s MRI results showed what looked to be osteosarcoma, and this diagnosis was confirmed after a surgical biopsy.
The doctor said that Gaby’s skating accident was actually a blessing in disguise that may have saved her life because, were it not for the fall, they may not have known that there was anything wrong with her knee until it was too late
Gaby then underwent 12 weeks of aggressive chemotherapy treatments to shrink the tumour to an operable size; each treatment required a 4-5 day hospital stay along with several hospital admissions for fever and/or neutropenia.
A new study suggests that survivors of childhood cancer tend to have a poor diet in their adult life; a diet lacking essential nutrients might increase the risk of chronic disease for survivors of childhood cancer, as they are already more prone to developing serious illnesses.
The study was carried out by researchers from the Friedman School of Nutrition Science and Policy at Tufts University in Massachusetts, in collaboration with St. Jude Children’s Research Hospital in Tennessee.
The team examined whether there was a connection between childhood cancer treatment and the survivors’ nutritional intake.
Using a self-administered Block Food Frequency questionnaire, the study looked at the diets of 2,570 adult survivors of childhood cancer to see if they met the requirements of the 2010 Dietary Guidelines for Americans. The results were recently published in The Journal of Nutrition.
In the spring of 2009, Grant’s parents noticed that he had a very bloated and hard stomach, but thought the conditions would simply go away naturally. His distended stomach remained for days and was accompanied by a low grade fever so Mom and Dad immediately took him to the emergency room.
Following extensive tests and scans, physicians discovered anaemia, an alarmingly low platelet count and an inflamed spleen. Grant’s father, a pathologist, examined the cells and immediately knew the grim diagnosis of leukaemia for his grandson.
On May 24, 2009, after additional tests, transfusions and a bone marrow biopsy, 2-year-old Grant began his fight against Philadelphia Chromosome Positive Acute Lymphoblastic Leukaemia (ALL), a condition in which less than 50% of those inflicted survive.
September is International Childhood Cancer Awareness Month therefore we at the Little Fighters Cancer Trust have been and still are doing triple time to spread as much information as we can about Childhood Cancer Awareness and the Early Warning Signs of Childhood Cancer.
Too many children in developing countries, including South Africa, are still dying from Childhood Cancer – most of them due to the fact that knowledge about Childhood Cancer is scarce therefore many children are either not correctly diagnosed or are diagnosed too late for effective treatment.
The more aware people are of Childhood Cancer and its Early Warning Signs, the more early diagnoses there will be, ergo the higher South Africa’s Childhood Cancer survival rates will be.
Today we are also raising awareness of another kind as regards Childhood Cancer, though, via a guest-post, and that is awareness around the importance of getting a second opinion.
We have edited this guest-post slightly in order for it to be more relevant to South African/African individuals….