Questions About Childhood Craniopharyngioma

Parents or guardians will have a lot of queries in their minds concerning their child’s disease condition. Open communication with the doctor and health care team is crucial in making informed choices regarding cancer treatment and care. Below is a list of questions you can ask your child’s healthcare team regarding craniopharyngioma. Parents or guardians are also encouraged to ask additional essential and relevant questions about their child’s condition.

Parents or caregivers are advised to note everything that the doctor recommends and prescribes and provide physical and mental support to the diseased child.

Questions to ask regarding craniopharyngioma diagnosis

  • What is my child’s disease condition? Could you explain in detail?
  • What is the tumour type? Where is its actual location?
  • How advanced is the disease condition?
  • Could you explain my child’s laboratory test results or pathology reports in detail?
  • Are there any other procedures to confirm my child’s diagnosis?
  • What is your expertise in treating craniopharyngioma?
  • How many CNS cancers do you treat and cure per year?
  • Do you update yourself regarding the disease? Do you attend meetings that discuss complicated tumour cases and new effective treatment options to deal with them? If so, which all specialists take part in such discussions?
  • Will an experienced neuropathologist examine my child’s pathology slides?
  • Should I seek any second opinion or additional consultation? Could you recommend any other physician with whom I can talk?

Questions to ask regarding choosing the craniopharyngioma treatment plan

  • What are the available treatment options to treat and cure this disease condition?
  • Which treatment strategy would you recommend and why?
  • What is the success rate of this treatment strategy?
  • Are there any clinical trials available for my child’s condition? If so, where can I find them? How can I get more information about clinical trials?
  • What is the aim of each treatment strategy? Is it to destroy the tumour growth, make my child feel better, or both?
  • What should we expect post-treatment?
  • Who are the members of the health care team? What are the role and duties of each member? 
  • Who will be leading the whole treatment plan?
  • Are there paediatric centres available to treat my child’s condition? If so, which one would you recommend?
  • Will the treatment affect my child’s vision, and how?
  • Does your health care practice include multidisciplinary care? Could you explain how?
  • Could you recommend or supply any reading material to help me better understand my child’s disease condition?
  • How do we manage the cost of treatment and care? Where can I seek help?
  • Are there any support services available for my child and our family?
  • Are there any local support groups available for families with children having craniopharyngioma? Can we avail of the service of social workers to deal with our traumas?
  • To whom or where should I consult if I have any more doubts or questions?

Questions regarding Managing and relieving craniopharyngioma side effects 

  • What are the possible long-term and short-term side effects of the treatment? Explain in detail.
  • Will this treatment affect my child’s day-to-day life and activities? Will it interfere with their ability to go to school and perform other usual tasks?
  • Can my child become obese or have a risk of being overweight due to the therapies?
  • Will any of these treatment procedures affect my child’s ability to conceive in the future? If so, what can be done to reduce the risk?
  • What steps would be taken to manage and relieve the probable side effects of the treatment?
  • Will post-treatment care focus on curing the side effects of cancer treatment?

Questions to ask about having any craniopharyngioma surgical procedures

  • Is surgery a part of my child’s treatment plan? Is the method necessary to treat the disease condition?
  • What type of surgical procedure(s) be performed to treat my child’s cancer condition? 
  • Instead of surgery, can we use a chemo procedure or radiation therapy to destroy the tumour growth?
  • What type of surgical procedure is available to treat my child’s tumour? Which one would you recommend and why?
  • What is the duration of the surgical procedure?
  • How long will my child need to spend in the hospital or care facility?
  • Could you describe what the treatment recovery would look like?
  • Whom or where should I contact if my child experiences any side effects due to treatment, and how soon?
  • Can these surgical procedures cause any side effects? Could you explain the short term and long-term side effects, if any, of surgery? 

Questions to ask about having radiation therapy

  • What is radiation therapy? Are there any types to this procedure?
  • If so, which type would you recommend and why?
  • What is the aim of this therapy?
  • What is the duration of the treatment?
  • Where would this treatment be conducted? At a hospital or a clinic? 
  • For how long is my child expected to continue this therapy?
  • What all side effects should we expect during and post-treatment?
  • Explain both the short term and long-term side effects of radiation therapy?
  • Whom or where should we consult if we experience any side effects or new symptoms?
  • What are the ways to prevent and manage these side effects?

Questions to ask regarding planning the craniopharyngioma follow-up care

  • Is there a chance that cancer may recur back in the body? If so, what is the chance? 
  • Should we watch for specific symptoms or signs that may indicate a possible cancer recurrence?
  • What follow-up check-ups, tests and scans would be required to analyze my child’s health condition?
  • How long will my child be required to continue this follow-up routine?
  • Who will be leading my child’s follow-up care?
  • Can I get a summary of my child’s treatment and survivorship care plan to keep in my records for future reference?
  • Are there any survivorship support services available for my family and my child?