At diagnosis, most parents do not know how to find the best doctors and treatments for their child. State-of-the-art care is available from physicians who participate in the Children’s Oncology Group (COG), sponsored by the National Cancer Institute (NCI). COG’s members—pediatric surgeons and oncologists, neurologists, radiation oncologists, researchers, and nurses—develop the standard of care for patients worldwide and conduct new studies to discover better therapies and supportive care for children with all types of cancer. The NCI also sponsors a consortium called the Pediatric Brain Tumor Consortium (PBTC) that consists of 11 institutions in the United States (all of which are members of COG). For further information about COG and PBTC, read Chapter 5, Choosing a Treatment.
Treatment of brain and spinal cord tumors includes one or more of the following:
- Stem cell transplantation
- Biologic modifiers and targeted therapies
Research continues to evaluate new types of treatment. At the present time, areas of exploration include reduced radiation dose, new methods of delivering radiation, new chemotherapy drugs, targeted therapies, and biological modifiers. The goal of these new treatments is to increase cure rates and lessen the likelihood of late effects from treatment.
The following sections provide a very brief overview of treatments. For more detailed information, refer to the chapters on surgery, chemotherapy, radiation, and stem cell transplantation.
Surgery is the primary treatment for most brain and spinal cord tumors. It is used to establish the diagnosis and to remove as much of the tumor as possible. For detailed information, see Chapter 10, Surgery.
The surgery to remove the tumor took about 4 hours, and there were no major complications. Scott spent 3 hours in the recovery room before being ready to go to the ICU. His first words after waking were, “I love you, Mom,” which obviously touched Karen. While in the recovery room, we realized that Scott’s stuffed Yoshi toy, who also went to the operating room, returned with a head bandage identical to Scott’s. Someone had a sense of humor!
Kirsten’s tumor had shrunk enough after four cycles of chemotherapy for a near total resection. However, the tumor was still considered active, and after surgery she went on to receive three more cycles of chemotherapy.
Chemotherapy is a term that refers to drugs that kill cancer cells. It is used to treat all fast-growing brain and spinal cord tumors and many slow-growing tumors. Response rates are considerably improved when more than one chemotherapy drug is given at a time. Some commonly used chemotherapy drugs include vincristine, cisplatin, carboplatin, etoposide, temazolomide, irinotecan, and cyclophosphamide. For detailed information, see Chapter 11, Chemotherapy.
Luke (2 years old) had side effects from his chemo protocol that were relatively minor compared to what other children experience. He did have nausea, but it usually consisted of one to three vomiting episodes over 1 or 2 days and was over quickly. Over the entire eight course cycle he did have numerous neutropenic bouts (low blood counts), with several visits to the emergency room for night-onset fevers resulting in short-term hospitalizations to get IV antibiotics. He did get two or three infections in his catheter, which also required hospitalizations for antibiotics. However, he only needed one blood and one platelet transfusion during the entire protocol. He ate incredibly well all during his protocol and even gained steadily in weight and height.
Generally, treatment with chemotherapy is mapped out in a protocol which includes a list of the medications to be used and how they are administered, the recommended dosages, and a schedule for when the medications will be given over the course of treatment. Protocols are explained in detail in Chapter 5, Choosing a Treatment.
Radiation therapy, also called irradiation or radiotherapy, is the use of high-energy x-rays to kill cancer cells. Many brain and spinal cord tumors are sensitive to radiation.
The primary role of radiation is to destroy tumor cells. Radiation is given locally to the area of the tumor and is given to the entire brain and spine if the tumor has spread or is likely to spread to other areas of the brain and spinal cord. For detailed information, see Chapter 13, Radiation Therapy.
Radiation was tough but it was also short. Ethan was still mute after surgery and pretty uncooperative, so we had no idea what he wanted to know. We opted to tell him everything: that he had cancer, that he needed radiation to treat the cancer, that they would be putting him to sleep everyday to do the radiation, and that he would lose all his hair, but through it all we would be with him.
The radiation to the head and spine lasted 13 days and was the hardest part. Ethan was nauseated (despite ondansetron). He stopped eating completely at one point, and had odd cravings at others. We met with the pediatric oncology dietician and when we asked what we should do if Ethan would only eat French fries. Her response was to take him to McDonalds three times a day. While we were shocked at the time, it really helped us readjust our expectations and priorities. Calories became king. Brownies for breakfast? So be it. We were so proud when he ate two instead of just one. These priorities continued into the year of chemotherapy and have served us well.
In the last decade, peripheral blood stem cell transplantation (PBSCT) has been used to treat children with difficult-to-treat malignant or relapsed brain and spinal cord tumors. In this procedure, high-dose chemotherapy is given; this kills bone marrow as well as tumor cells. Normal stem cells are then infused into the child’s veins. The stem cells migrate to the cavities inside the bones, where new, healthy blood cells are then produced. For some tumors, the current treatment is a series of two or three PBSCTs (referred to as tandem stem cell transplants). For more information about these types of transplants, see Chapter 14, Peripheral Blood Stem Cell Transplantation.
Sean (18 months old) has now had two rounds of high-dose chemo with stem cell transplants. The first went off without a hitch, the second was a bit of a nightmare. He got an infection, colitis, and then a staph infection in his line. He was in the hospital for about 10 days after the stem cell transplant. With Sean’s diagnosis of atypical teratoid/rhabdoid tumor (AT/RT), we know that our time with him may be limited and we want to make sure we are focused on giving him the best shot at survival and, as important, the best shot at a joyful, loving life, however long.
Unlike many other cancers, brain tumors (especially slow-growing tumors) may have periods of little or no growth. For this reason, the physician may decide to check the tumor with MRI scans at designated intervals. Observation may be recommended if the tumor is quite small and causes no symptoms. A period of observation usually occurs after partial removal of a deep, slow-growing tumor (especially in a young child). Observation always occurs after completion of treatment for a fast-growing brain or spinal cord tumor.
Brendon was diagnosed with a slow-growing tumor of the brainstem when he was 7 years old, after 2 years of confusing symptoms and dozens of doctor appointments. The first children’s hospital told us, “We can’t do chemo and we can’t radiate it. It’s too deep for surgery. Take him home; he has less than 6 months to live.” We saw an article in a magazine about a famous pediatric neurosurgeon, and called him. He called us right back and 2 days later he operated and took out about 90 percent of the tumor. The treatment was just observation then. We had MRIs every few months. When Brendon was 10 he started getting symptoms again—trouble swallowing, breathing problems, growing paralysis. The tumor was growing inward so surgery wasn’t an option. So, we did chemo and it relieved many of the symptoms. Then we observed again. This has been the pattern for the last decade—treat, observe, treat, observe. Brendon is now 16.
Many researchers devote their lives to unlocking the mystery of what causes brain tumors to form and how to change or stop tumor growth. Over the past 2 decades, slow but steady progress has been made. Two newer approaches in treating children with brain and spinal cord tumors are biological modifier therapy and targeted therapies.
Biological modifier therapy uses living cells, substances derived from living cells, or synthetic versions of cells to treat tumors. Some types of biological modifier therapy use the immune system to identify and kill tumor cells, and other types target tumor cells directly. For example, one biological therapy, called immunotherapy, uses synthetic copies of proteins (antibodies) to attack foreign cells like cancer. Another biological therapy uses cytokines (proteins that act as hormone regulators) to stop tumor growth or interrupt cell movement.
Targeted cancer therapies use drugs or other substances that block either the growth or spread of cancer by interfering with the molecules involved in tumor growth. Targeted therapies interfere with cancer cell division in different ways. Some therapies focus on the proteins that are involved in cell signaling pathways, which form a communication system that governs basic cellular functions and activities such as cell division, cell movement, and cell death. By blocking signals that tell cancer cells to grow and divide uncontrollably, targeted cancer therapies can help stop cancer progression and may cause cancer cells to die. Other targeted therapies can indirectly cause cancer cell death by stimulating the immune system to recognize and destroy cancer cells and/or by delivering toxic substances directly to the cancer cells.
New biological and targeted therapies are being tested for brain and spinal cord tumors. To learn more about the newest targeted and biological therapies, go to www.cancer.gov. You can search the website for information about new therapies and for a list of clinical trials available for your child’s brain or spinal cord tumor. An additional source of information is CancerNet, which you can reach by calling 888-273-3508 or online at http://cancernet.gov.
Our daughter Morgan was diagnosed with medulloblastoma in the cerebellum when she was 2 years old. We researched, took her to one of the top pediatric neurosurgeons in the country, and he totally resected it. We did more research on treatment options, since radiation at her age would be devastating. But, we also wanted to kill the cancer. We decided on a clinical trial that involved very high dose chemotherapy with stem cell rescue [transplantation]. Those treatments were incredibly difficult.
Two years later, the tumor grew again at the same place, but we caught it early. It was again totally removed, and we again began a research effort on options for treatment. We chose a new type of radiation. We, like many other families of kids with brain tumors, had to use many different treatment methods over time. We are so grateful that new, and more effective, treatments had been developed to help our daughter.
Morgan is now 18 years old. She is a senior in high school and is currently looking at colleges. Does she have learning disabilities? Yes. Are they stopping her from pursuing her dreams? No.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites