What Types of Pediatric Cancer Doctors Are There?
One size does not fit all when it comes to a pediatric cancer doctor and no two patients are the same, therefore there is no substitute for the expert care of your medical team. With the wide ranging and individualized cancer journey, it is important for children and their families to be taken care of on a case-by-case basis. Each child needs special treatment from a specialized care team, not just during the treatment, but from the very moment of diagnosis all the way through to recovery. Your pediatric cancer doctor will be there to direct the team and process all the way through that journey.
Life in the hospital can be challenging. Your child will likely go through periods where he/she doesn’t feel well, is in discomfort from a procedure and usually will learn to associate the hospital with unpleasant times. Putting effort in to find the pediatric cancer doctor and team for you can be difficult but is worth the work.
Diagnosis Team
- Radiologist: A radiologist is a doctor who specializes in diagnosing diseases using medical imaging methods, such as X-rays, computed tomography (CT) scan, magnetic resonance imaging (MRI), positron emission tomography (PET), nuclear medicine tests, and ultrasound.
- Radiologist technician: A radiology technician is a health professional who uses X-ray, CT, MRI, PET, nuclear medicine tests, and ultrasound to create the images of the body that the radiologist will review. Imaging techs are often some of the first health professionals who patients meet during the cancer journey.
- Oncologist: The oncologist is an expert on cancer and, in some cases, may specialize in sarcomas. All aspects of treatment are run through the oncologist. This is also the doctor you will have the most contact with, probably seeing almost daily while in the hospital.
- Nurse: During your child’s stay in the hospital, a nurse is assigned to monitor and oversee treatments for them, as well as a small group of additional patients. Your nurse will be the person you see and interact with most on the medical team. Nurses will check in regularly to monitor patients’ vitals. They will give any medications ordered by the doctors. If chemotherapy is part of the treatment, they are the one who administers it. A partner nurse will be there to confirm that the patient and prescription match as ordered by your oncologist. In some hospitals, nurses are paired with patients so that you will have the same nurse every time you are admitted. This is nice for the patient and nurse to get to know each other. It allows them to know personalities as well as treatment preferences.
- General Surgeon: A general surgeon is called in for more common surgical needs. This may include the procedure to implant a port-a-catheter. If a recurrence occurs, a general surgeon or thoracic surgeon more familiar with internal surgeries may be called in for the thoracotomy.
- Oncologist Surgeon: An orthopedic oncology surgeon is needed for the initial biopsy and to remove the tumor and any bone it is attached to. They are experts on removing tumors with sufficient margins to reduce the chance of any future recurrence.
- Pathologist: The pathologist will examine tissue from biopsies and surgeries under a microscope. Their goal is to determine the appropriate diagnosis and to provide other information that will impact care, such as: if chemotherapy has been successful at killing the tumor and whether the surgical margins are free of cancerous cells.
Non-medical Support Team
- Religious Representative or Chaplain: The chaplain is a religious counselor in the hospital. Most hospitals have chaplains for different religions. They are another resource for families of faith to talk to and seek support. If you would like to request a visit, ask your nurse or child life specialist.
- Child Life Specialist: Child Life Specialists are trained in how to discuss medical topics with young patients. They can show patients what their medical procedures will be like ahead of time such as: what a port-a catheter is, how it is used and what will happen before, during and after surgery. They can help distract patients during procedures when they are feeling overwhelmed or scared. Child life specialists can also help siblings understand what is happening to their brother/sister and make them a part of the support team.
- Insurance Case Manager: They are typically a nurse by training, similar to the case managers at the hospital. In one example, it was the insurance case manager that educated a family about second opinions and confirmed their insurance offered coverage for a portion of travel in addition to the medical costs. If your insurance company does not call introducing you to your case manager, you can contact your insurance provider to determine if one is available.
- Psychiatrist: A psychiatrist is a mental health professional who can assist patients or family members with the stress of a cancer diagnosis. They are different from psychologists in that they are able to prescribe medication. Do not be alarmed if your child is put on a ‘psychiatric medicine’. In different dosages, they can decrease nausea and other side effects of treatment. Most kids may benefit from a short course of anti-anxiety or anti-depression medication while coping with cancer and its grueling treatment. Learning coping and acceptance skills can benefit your child and family long term. The psychiatry team joins in the holistic treatment of your child, not just the cancer. If a psychiatrist is not available at your treating institution, then your nurse, social worker or doctor may be able to offer recommendations.
- Social Worker: Your hospital should have one available for you to connect with. When hospital and medical costs become overwhelming, they can link you with local or national foundations that give assistance to families in treatment. They may have access to tangible things that make life easier such as: gas cards, parking discounts, meal vouchers or discounted hotel rates. Social workers can also help suggest support groups or activities for parents, siblings, etc. Social workers can assist with tutors during inpatient stays and partner with your school district to create a plan for school. Social workers can provide your school district the documents needed to develop an Individual Education Plan (IEP) or 504 plan for your child.
- MIB Ambassador Agents: MIB Ambassador Agents program connects patients and caregivers to osteosarcoma survivors. Ambassador Agents are dedicated to providing support and hope. As individuals who have walked the osteosarcoma path, they are here to understand and hear you, you are not alone.
How To Choose The Right Doctor
Most importantly, you will want to choose the right pediatric cancer doctor for you and your family. One that you have the utmost confidence in. You should be comfortable with your team and definitely consider second opinions. Sarcoma centers often work with other institutions to provide the best care for patients at other facilities, so you can pursue care at a local facility while getting input from a sarcoma center. Since cancer treatment is so challenging, it is normal for your confidence to ebb and weigh, so be sure to continue to ask questions and get your concerns heard. Open communication will help bridge any gaps or misunderstandings. There is no time-frame for choosing another team. If you ever feel stuck, you can change teams at any time in order to advocate and get the best pediatric cancer care team you can.
Resources To Help Cope With Osteosarcoma
*No two osteosarcoma patients are the same, therefore there is no substitute for the expert care of your medical team. This is not meant to replace the guidance of your oncology team. It is meant to share resources, information and support.
Photo of Andrew, Junior Board Vice President, celebrating his clear three year post-treatment scans with his team.
