SUPPORT FAMILIES WITH CHILDHOOD CANCER PATIENTS
About Childhood RMS in Asia
The incidence rate of childhood RMS in Asia is growing rapidly by 2.8% per year, with approximately 40,000 new cases every year. This figure is higher than that of America (1.2%) and Europe (under 1%). Malignant tumor has become the second leading cause of death for children in Asia, after unintentional injury: 9th in children under the age of 1 (the mortality rate being 0.73%), 5th in children from 1 to 4 years old (the mortality rate being 6.2%), and 2nd in children from 5 to 10 years old (the mortality rate being 12.32%). Overall, of all childhood deaths, the percentage of children dying from cancer is 19.25%; in other words, almost 1 in every 5 child deaths is caused by cancer.
Report from scholars shows that of all childhood cancer cases, 30% of them are leukemia, 20% are brain tumor, 10% are lymphoma, and 40% are other solid tumors. Of these solid tumor cases, 15% are RMS. According to a recent research by the Intergroup Rabdomyosarcoma Study Group (IRS), when diagnosed with RMS 66% of the patients were under the age of 10, 6% were under the age of 1, and the average age of diagnosis is 5. According to reports from various hospitals in Asia, the age of diagnosis for RMS spans from 0 to 14, with 2 to 5 years old being when RMS is most likely to develop, and the average age being 6.5. Around 3.5% of all cases of malignant tumor in children 0 to 14 years old are RMS. Embryonal Rhabdomyosarcoma (EMS) is the most common, being approximately 67% of all RMS cases. The 5-year survival rate of RMS is 90% for early stage, 70% for intermediate stage, and less than 30% for late stage. Some articles point out that overall, the survival rate of RMS in Asia is 20% lower than that of developed countries in Europe and America.
The Difficulties for Childhood RMS Patients
Children with malignant solid tumors, including RMS, face four major difficulties.
The first one is misdiagnosis; many were not properly diagnosed, and as a result missed the best opportunity to be treated. Priceless lives were lost due to misdiagnosis. Type “misdiagnosis of RMS” into the search box, and you will see all sorts of entries: there’s misdiagnosis by clinicians, radiologists, and pathologists. For example, cases of head-and-neck RMS were diagnosed as allergic rhinitis, chronic suppurative otitis media, mumps, etc; some abdominal RMS cases were diagnosed as hernia; temporal RMS was diagnosed as hematoma by the MRI technologists. Some children cannot get a definite diagnosis and have to move from hospital to hospital. Both the patient and their family are physically and mentally harmed, and have to suffer from significant financial losses. A 4-year-old RMS patient was misdiagnosed twice, first with diffuse large-B-cell lymohoma and then with neuroblastoma. He did not get a proper diagnosis---adenoid rhabdomyocarcoma---until the fifth time, and was in stage IV cancer at this time. He had to eventually go to Munich, Germany to be treated.
The second difficulty many children face is that they cannot get proper treatment after diagnosis. Few hospitals really have the condition or vision to carry out proper treatments. In fact, most tumor hospitals don’t have pediatric departments; most general hospitals with pediatric departments don’t have departments for radiotherapy or pediatric surgery. Often times, in order to receive proper surgery, radiotherapy and chemotherapy for malignant solid cancer, a child has to visit multiple hospitals in different cities and provinces across the country, or even spend huge amounts of money to receive treatment overseas. Moreover, some doctors hold outdated ideas in their practices. They see childhood tumor as miniature version of adult cancer, see their patients as incurable, mix the toxic side effects of anti-cancer drugs with the growth of the tumor, and treat their patients passively; some even persuade the parents to give up their treatment. Many children given up on by the doctors managed to escape Death’s grasp because of their parents’ perseverence.
The third difficulty is the huge amount of money required to treat malignant tumor. The cost easily exceeds tenth of thousands dollar, sometime millions. The majority of families in Asia belong to low-income groups; since there are many limitations to the healthcare, the average family cannot afford the costs of treatment and travel expenses to visit doctors. Once the bad luck comes and a child is diagnosed with tumor, a family is often forced into debt or to sell their possessions.
The fourth and most desperate difficulty is medication. More and more children are diagnosed with cancer, yet few medications are available. Although many anti-cancer drugs for adults have statements saying that effects and side-effects on children are not yet clear, but in order to save the patients, doctors have to test the effects on the children. Children have to suffer from severe toxic side-effects and even death, just to live for a few years longer. It’s not worth it, yet they are helpless.
Conclusion: every child is trying their best to live, and every parent is giving all they can to look for a cure. Let us care for their physical and mental wellness, and the safety of their lives.
Selected Children Hospital Resources in the United States：
St. Jude Children's Research Hospital
Cincinnati Children's Hospital
Boston Children's Hospital
Children's Hospital of Philadelphia
MSK Kids (Memorial Sloan Kettering Cancer Center)
MD Anderson Cancer Center
How we will help：
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Assist patient families to obtain specialized doctors and cancer centers' second opinion through long distance consultation Patient Assistance Application;
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Assist patient families to apply for clinical trials or treatment in the U.S.; help arrange traveling and housing for treatment trips, as well as visa application Patient Assistance Application;
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Assist patient families to admit palliative and hospice care program, and provide finance assistance Palliative and Hospice Care Resource Application;
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Mentally and emotionally support the patients and their families and provide one-on-one counselling.
Translated by: Joyce Wang
