In 1978 I was diagnosed with Alveolar Rhabdomyosarcoma in my lower left arm. Surgery, radiation and nearly two years of chemotherapy followed. In 1980, shortly after finishing chemo, I experienced a relapse. More surgery, more aggressive chemotherapy, more extensive radiation. 18 months later I discontinued treatment. In 1980, we could not find a doctor in the US that had successfully treated a child who had relapsed with Alveolar Rhabdomyosarcoma. The odds were not in my favor. The treatments were harsh- high dose chemotherapy, and high dose radiation. The long term side effects of cancer treatment for children treated prior to 1986 are myriad and, well, rough. The side effects depend on types of cancer, treatments given, age at treatment, and genetics.
It is great news that more and more children are surviving childhood cancer- well into adulthood and even old age. But the long term effects are not well known to primary care physicians and specialists. There are, however, doctors, researchers, and clinics for long term survivors of childhood cancer. This page is dedicated to those resources. Let me know if there is a special resource I need to add!
Books for Cancer Survivors
- https://childrensoncologygroup.org/ -hub of information for cancer patients, survivors and families
- http://csn.cancer.org/forum– online support groups for people with cancer, their caregivers and survivors
- http://www.fastweb.com/college-scholarships/articles/cancer-scholarships– a list of scholarships for people with cancer and cancer survivors
- http://www.cancer.gov/types/childhood-cancers/ccss– links to research
- https://ccss.stjude.org/published-research/publications.html – St Jude study- published research
Check recent pins – Cancer Survivor Resources