What should I do?

[jstew645]

I just joined this forum and need some help.  I apolgize for what I can see will be a very lengthy blog.  I am a 71 year old male diagnosed in Sept. with a pituitary brain tumor.  Here is the radiologist's report:  There is a mass replacing the clivus that extends from the base of the sella turcica down to near the basion; the lesion measures 2.0 x 2.0 cm axial and 2.6 cm in the craniocaudal dimension.  This is midline and is isointense to gray matter on T1, slightly hyperintense on T2 without restricted diffusion within the lesion.  There is subtle differential identification of the pituitary gland separate from the lesion although incompletely so; differential diagnostic considerations include chordoma, meningioma, primary ptuitary neoplasm, nasopharyngeal carcinoam with local invasion and/or mestastasis.  Note, this lesion does not expand or invade into the posterior fossa or in case the basilar artery.  However, it does partially enclircle the cavernous segment of the left internal carotid artery although the cavernous right ICA appears spared.

The cerebral hemispheres are normal in appearance and bilaterally symmetric.  The ventricles are within normal limits in size and midline.  There is no evidence of abnormal mass or mass effect.  Thre are a few punctate T2/FLAIR hyperintense foci noted in the deep and subcortical cerebal white matter;  these foci do not demonstrate mass effect, or restricted diffusion and are nonspecific though likely sequela of chronic small vessel ischemic change.  The brain stem and cerebellum appear normal.  Diffusion-weighted images are negative for acute or subacute infarct.  No acute subdural, epidural, subarachnoid or intraventricular blood.  Normal signal flow void in the visualized circle of Willis vessels. The soft tissues, calvarium orbits and paranasal sinuses are unremarkable.

Note:  I learned to type in the Army National Guard.  40 wpm.  Coming in handy now!  I saw a neurosurgeon after being diagnosed.  My prolactin level was through the roof at about 850 but now back to normal.  Neurosurgeon put me on bromocriptine 2.5 mg daily but now up to 5.0 mg daily as per Endocrinologist's instructions.  Neurosurgeon opted not to operate especially at my age.  I sought a second opinion from a surgeon that is recommended as being one of the best in Las Vegas.  He initially suggested an operation but when he realized that my prolactin levels had gone down dramatically said he would wait and see.  I had a second MRI on 11/19 and was hoping it would show whether or not the tumor had either shrunk, stayed the same or grown.  Instead this is the report I got (obviously from a different radiologist):

Mucosal thickening versus soft tissue thickening along the left maxillary sinau and clivus extending into the posterior clinoid region and in additon there is some asymmetry of the pituitary gland on the left.  The pituitary stalk is somewhat deviated to the right.  No discrete pituitary gland lesion however the sinus disease involving the sphenoid sinus areas slightly atypical appearance and no well formed cortical bone could be detected.  No obvious mass however.  The remainder of the brain is unremarkable without mass or space-occupying lesions.  No extra-axial fluid collections.  Ventricles, sulci and cisterns are symmetric.  The orbits and circle-of-Willis are unremarkable.  Left mastoiditis changes present.

Don't know what to make of all this.  Can bromocriptine help me (and is the dosage strong enough) or do I need surgery?  I am scheduled to see the endocrinologist again in January.  I worry that this tumor could be growing and I am waiting too long to take action.  New symptoms for me are water in the ear, clicking noises when I turn my head and tightness around the mouth and forehead. Would be very appreciative of any advice or suggestions that you might have for me.

[rumpled]

Monitoring means regular blood work and once you are stable, an MRI at a regular interval set depending on your history - it can be 6 months, a year or whatever - normal is 1 year.

The doctor should run a lot of hormones not just prolactin to monitor. Things can change.

If you cannot find an expert in network, then you can appeal to your insurance to find you an expert. Pituitary lesions need expert treatment. You had a macro-adenoma that responded to treatment - and you need to keep an eye on it so it stays small.

[jstew645]

The first radiologist report came from Desert Springs hospital and the second from Steinberg Diagnostics.  Different radiologists issued the MRI reports.  Rumpled, thanks so much for setting me straight on the MRIs.  I find that a dynamic scan pituitary MRI is available from both Desert Radiologists and Steinberg Diagnostics.  This obviously is what I should have had for the second report.  My PCD maybe not smart enough to know this, but thank goodness for your knowledge--will do my best to get a dynamic scan MRI and also try to get it interpreted by the same radiologist that wrote the report from Desert Springs hospital.

When you refer to a monitoring program, would that be through further MRIs or further blood work or both?  Is there anything to look for in blood work that would give an indication of whether or not the tumor is shrinking?  I am with Senior Dimensions for my HMO and am pretty much stuck with what doctors they send me to so doubt that I would be able to be monitored in California.

[rumpled]

You have quite a contrast between report #1 and report #2.

Were they taken at the same radiology place, same machine? Were any of them dynamic pituitary MRIs? It does help things light up there. If you were taken out to give contrast, that means no.

#1 - (my layman read) - You had in pituitary terms a macro-adenoma (but the radiologist really could not determine what the lesion what, hence he listed several things that it could be as it appeared not to be completely attached to the pituitary).

So they gave you meds - which is great as that should shrink tumors in most - but it seemed to be a dramatic change give the next report.

#2 - (my layman read) - they do NOT see a pituitary tumor. However, given that the stalk deviates to the right, odds are one is still there - it is just small (had you had a dynamic scan, it may have shown up - MRIs have a 3mm slice and smaller lesions can fall between them). Also your pit is not symmetrical.

So, it appears that the medication is helping you quite a bit and that surgery can be put off.

You will however have to stay on the medication. You also have to keep on a monitoring program. I hope you are at a pituitary center under the care of a neuro-endo (you may have to go to California).