Q & A with
Brain Tumor Coordinator
Tabatha Doyle, RN

A.  We want to make it as easy as possible to reach us. You can call 901-595-2544 or email me directly. You can also visit our Brain Tumor Treatment page to learn more about the program and contact us directly through the Brain Tumor Contact Form on that page. If we have an open study that might fit your patient, I will send your office a checklist of required documentation and the patient consent form. 

A.  Tennessee is stricter than some other states on this. Even if the parents are unmarried, the mother is considered the legal guardian in Tennessee unless documentation shows otherwise. We need copies of any guardianship or divorce papers before we can admit a patient.  Families can read more information about these requirements on our printable page, “Why St. Jude needs legal papers for medical care.”

A.  About half of the calls I receive are from patient families. Some families call from the hospital room as soon as they get a diagnosis. They are desperately seeking information. As a mom, I know I’d be doing the same thing if it was my child. I am always willing to talk with them and answer any questions they may have about our studies. We try to give a lot of TLC and listen. If we offer treatment for that diagnosis and we have an open protocol, I tell the family to talk with their child’s physician about the study. I explain we work closely with their child’s doctor and always try to keep the physician involved.

A.  Usually, we can give a preliminary answer even before we receive all the documentation, if we’re fairly confident the child will be eligible. We can confirm eligibility once we have received and reviewed the pathology. We make every effort to expedite urgent cases. I always ask, “When was the patient’s surgery?” because a lot of our studies have a maximum number of days between surgery and beginning the protocol treatment. 

A.  Yes. We may be offering that same protocol at a collaborating institution. Sometimes, parents call us from a hospital that is already participating in the study. I tell those parents their child can get the exact same treatment at the collaborating institution. However, if the family insists on coming to St. Jude, we will be happy to review the child’s case.

A.  If we don’t provide treatment for that diagnosis or don’t have an available protocol, we can offer a second opinion, if requested. We can also refer the family to other, trusted resources for information. For instance, we often receive neurofibromatosis (NF) inquiries from families, but we don’t have an NF clinic here. Since many NF patients are predisposed to developing tumors later, we refer callers to other NF sites, such as the Neurofibromatosis Network and the Children’s Tumor Foundation.

A.  Physicians often ask us to review cases in which the patient has a rare tumor or is not responding well to treatment. Sometimes, a physician will want a second opinion because the tumor looks a little different from the normal presentation. We discuss all of these cases at our weekly Tumor Board meeting and send a letter to the physician with the findings and recommendations of our team.

A patient’s family may also request a second opinion. When this occurs, we recommend they speak with their local oncologist about communicating with us and sending the case for review. The pediatric brain tumor community is very connected, since we all work together to offer better treatment options to families around the world. We prefer to communicate directly with the local oncology team about the patient and any recommendations we may have on the case. We are also happy to work with pediatric neurosurgeons, primary care physicians, pediatricians and many other pediatric specialists who may be caring for the child. We want to be able to offer a comprehensive review of the case. In order to do that, we need the local care team involved in the process. 

A.  We sometimes help families with closure and end of life conversations. For example, I have had physicians ask me to talk with a family when the child is going on hospice care. Those are probably the hardest conversations, but sometimes all a family needs is to hear that all available treatments have been exhausted.

A.  Our team is working on several studies for children with newly diagnosed and recurrent/progressive brain tumors. Clinicians can subscribe to the St. Jude monthly Clinical Trials Alert email to be notified when these protocols open for enrollment.