What Sort of Questions Need Answers

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?

For Radiotherapists

• 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.

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