As soon as possible after diagnosis, parents sit down with the medical team to discuss treatment options. If your child is being treated at a COG hospital, the first discussion is usually about standard treatment and a clinical trial (if a trial is open and your child qualifies). Parents are often very conflicted about choosing a treatment.
Paige (age 4) took part in a clinical trial to treat her stage IV neuroblastoma. Her oncologist was the principal investigator, and he presented it to us as the best treatment plan for her. I have a stepsister who is a pediatric oncology nurse/researcher, and we discussed the treatment plan with her. Once all our questions were answered to our satisfaction, we decided to agree to the clinical trial.
The choice to opt for standard treatment or a clinical trial is a strictly personal one, but parents should only make it after they are certain they understand the implications of each path. The doctor is legally and ethically bound to inform parents of the full range of appropriate treatment options available to their child, and to help them understand what each option entails before asking them for written consent to begin a particular treatment plan. The doctor may recommend the treatment option that he believes to be best for the child, but he may not coerce or deceive the parents into approving a treatment. Once the parents have consented to standard treatment or a clinical trial, the doctor must abide by their decision.
Saying no to a clinical trial
Parents, children, and teens have the legal right to decide whether or not to participate in a clinical trial. If the family chooses for the child not to participate in the proposed clinical trial, or if their insurance refuses to pay for the treatments given in the clinical trial, the child or teen is given the best-known treatment (standard treatment) for his type of tumor.
Saying yes to a clinical trial
We just were not comfortable with the concept of a clinical trial. It seemed like gambling to us. We also felt totally overwhelmed about making decisions on important subjects that we didn’t understand. Even though we asked many, many questions, we just couldn’t come to grips with the whole idea in the 2 days after our daughter was diagnosed. So, we declined the trial and had the best known treatment. We are happy with our decision.
If you decide to enroll your child in a clinical trial, the form you sign will have language similar to the following: “The study described above has been explained to me, and I voluntarily agree to have my child participate in this study. I have had all of my questions answered, and understand that all future questions that I have about this research will be answered by the investigators listed above.” It is a good idea to keep a copy of the signed form.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups