Finding the Right Doctor

As of now, few criteria exist for evaluation of physicians and their experiences with pituitary issues in general and tumors inparticular. The PNA, with the help of doctors and patients experienced with pituitary diseases and tumors, has compiled this list of simple, straight forward questions.

Ask these questions of your current physician to help confirm your comfort level with him/her. Take a copy of this list when looking for a new doctor to treat you. Decide what answers you will accept and which ones are automatic red flags. If at all possible, bring your spouse or friend to keep notes and help you stay focused on the medical interview(s). Remember, YOU ARE INCHARGE OF YOUR OWN CARE. YOU HAVE THE FINAL VOTE. Take care of yourself first.

The following two questions should be answered before you visit the doctor. The information is available from your state's Medical Association.

  • Is the doctor Board Certified in his/her field of specialty?
  • Where did he/she receive training?

For the Endocrinologist:

  • Do you have many patients with my type of problem? How many?

Since there are many types or varieties of pituitary tumors, no specific answer can be expected. If the physician has seen many patients with this problem, then that is a positive sign. However, it gives no insight into the quality of their experience.

  • Do you specialize in pituitary tumors and disease?

There are many areas of endocrinology. You want a pituitary specialist.

  • Do you have a neurosurgical colleague that you routinely refer patients to?

It is generally encouraged that an endocrinologist would develop a relationship with one or several neurosurgeons that would be able to discuss the evaluation, decision making and post operative treatment.

  • Do your neurosurgical colleagues routinely refer pituitary patients to you for pre- and post-operative management?

It is highly desirable that a neurosurgeon work with an endocrinologist before and after surgery to assure the intervention decision is correct, that the patient is well prepared for surgery, and that the patient has post-operative endocrine assessment which helps ensure proper post-operative treatment. In general, it is recommended that endocrinologists handle the long term follow-up of a patient with pituitary disease.

  • How do you usually treat patients with my problem?

Does the doctor treat with medication first before resorting to surgery or radiation, or does he/she use combined approaches?

  • How will my hormone levels influence your decision on treatment of my pituitary tumor?

No patient with a pituitary adenoma should go to surgery without a pituitary hormone level baseline test being done and a decision made as to whether medical or surgical treatment would be most appropriate. Decisions would be based upon the individual circumstances. In general, however, there is an increasing trend to treat these tumors with drugs to shrink the tumor mass. In many instances this is used as primary treatment, with surgery only after drug therapy fails to bring about the desired tumor shrinkage.

For the Neurosurgeon:

  • Do you specialize in pituitary surgery?
  • How many pituitary surgeries do you perform every week/month/year?

There is reason to believe that 2 - 5 operations per month are the minimum for a neurosurgeon to perform to maintain a high degree of surgical competency.

  • Do you always treat patients with prolactin secreting macroadenomas with surgery?

No patient with a pituitary adenoma should go to surgery without a pituitary hormone level baseline test being done and a decision made as to whether medical or surgical treatment would be most appropriate. Decisions would be based upon the individual circumstances. In general, however, there is an increasing trend to treat these tumors with drugs to shrink the tumor mass. In many instances this is used as primary treatment, with surgery used only if drug therapy fails to bring about the desired tumor shrinkage.

  • To whom do you refer patients for pre- andpost-operative management?

It is highly desirable that a neurosurgeon work with an endocrinologist especially before and after surgery to assure that the intervention decision is correct, that the patient is well prepared for surgery, and that the patient has post-operative endocrine assessment which helps ensure proper post-operative treatment.

  • On an annual basis, what are the outcomes of your surgeries?

Morbidity? (Complications)

Outcome? (Chemical cure/total resection, remission, etc.)

For the Radiation Physician:

How many pituitary tumors do you treat each year?

What planning system do you have?

Is it based on CT or MRI?

Why do you recommend Radiosurgery rather than Conformal or Conventional Fractionated Radiotherapy? (these terms are interchangeable depending on what is recommended)

What methods are available at your institution?

What is the cost, and how does it compare with the other methods?

What are the risks?

A. Lack of control of tumor
B. Visual damage
C. Secondary tumor development
D. Intellectual impairment
E. Pituitary hypothalamic failure

What are your results?

A. Control of tumor growth
B. Normalization of the hormonal hypersecretion
C. What complications may occur in my specific case?

Questions for ANY physician:

  • What written information do you provide to patients with my problem?
  • Where do you refer them for additional information?
  • Are there new approaches to treatment of my pituitary problem? How did you hear about them?

Is the doctor keeping up on things? There may or may not be new approaches but the response can give you a comfort level that the doctor is keeping up. Ideally, his/her information would come from literature or medical meetings, not from a pharmaceutical company representative alone.

  • May I speak to some of your other patients with similar problems?

He/She should have other patients willing to talk about their experiences and results.

  • What is the best scan to see a pituitary tumor?

It is generally acknowledged that an MRI is much more effective in assessing a pituitary mass lesion than a CAT scan. A physician that is not aware of that would not be experienced in dealing with pituitary tumors.

  • Where and under what circumstances to you refer patients for radiology?
  • Psychological counseling?
  • Other specialists?

The PNA believes that patient care must include interdisciplinary management of the patient's problems.

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