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.

For the Endocrinologist:

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.

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

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.

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.

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

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:

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.

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.

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.

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:

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.

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

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.

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

Print