Here are some examples of questions I asked at the time, some that I wished I'd known to ask earlier, and some that other patients have contributed.
For the Endocrinologist
• Why are you doing these tests? What do the results mean?
• What's likely to happen over the next few months, years, and beyond (follow-ups, medication, endocrine changes as a result of treatment)?
• How will this problem affect my life expectancy? What counts as a cure?
"The trickiest part is understanding why it takes so long for the treatment to become fully effective."
• Why do these tumors grow? What is meant by "benign"? Will my children inherit the condition?
• How soon are post-op patients likely to return to work?
• Why is radiotherapy recommended? What are my options? What benefits will it bring? How experienced are the staff with these procedures?
• About the surgeon: How experienced is he in this procedure?
• What happens to bits they can't remove? Will they regrow?
• What about new drugs and trials?
• How do I know when I need to increase my hydrocortisone dosage? How often can I safely do this? What happens if I take too much? Will it affect my bones?
• How will my treatment be shared between you and my GP?
• How will my GP be informed of what is happening?
• What if my GP or local health authority will not fund the drugs?
• What are some other sources of reliable information?
For the Surgeon
• How is the operation done? How often do you perform this operation?
"I went to see the recommended surgeon who, I was reassured to hear, did lots of these operations. He explained how he would access the pituitary to remove the tumor. I had been wondering and it was the mostfrequent question asked of me."
• Show me and explain the MRI scans.
• What should I expect immediately post-op and after a few weeks?
• Does the nursing staff treat pituitary patients very often?
• What happens before, during, and after the treatment?
• What if I move during the treatment (e.g., sneeze because of hay fever)?
• What are the risks? How are treatment and potential side effects monitored?
• What experience does this medical center have in treating pituitary disease?
• What will I feel? Can I wash my hair afterwards? Will my hair fall out? Will I have sore patches?
• Do you have any information I can read?
For Endocrine Specialist Nurses
• About the tests being performed: What will happen? What are they for? When will I know the results?
• What should I do in emergencies? This is especially important when the patient is on steroids (e.g., when and how to use an emergency injection).
• I wasn't able to follow the doctor's explanation completely. Can you explain what the doctor meant by ? I forgot to ask the doctor about Do you know?
• About anything else that concerns you.
Was this article helpful?