Peace of Mind Granted

My recent hormone levels indicate the acromegaly is still in remission and I can relax. I don't have the details right now but I've been assured by neurosurgeon that everything is good and my GH suppressed. I'll post the hormone numbers later. My IGF-1 level is still pending but I am not worried about that since the growth hormone suppressed below 1.0.

Dr. Kelly really went out of his way to help me and for this I am so grateful. The endocrinologist explained his stance on why he refused to repeat blood work. He feels that when IGF-1 and prolactin levels are normal this is sufficiently indicative of remission; therefore, the glucose suppression test is not needed. He said he thought I was the only one that asked to have the suppression test done and did not realize the suggestion came from the neurosurgeon. He felt the MRI report was "vague" in description of the mass(es) and it did not warrant further investigation. He made it clear that he disagrees with having the suppression test regularly as definitive testing even when there is questionable residual on the scan.

As you can imagine I am VERY relieved that the blood work is normal, especially when I consider my options concerning growth of any residual tumor next to my carotid artery. The location deems it inoperable. Dr. Kelly mentioned this shortly after my surgery when the macroadenoma was removed three years ago:

- August 31, 2005

“...should this [2mm] area in the cavernous sinus prove to be residual tumor, it would be an ideal target for radiosurgery and would likely not be amenable to further surgical removal given its location within the cavernous sinus.”

Given my endocrinologist's reluctance to put my mind at ease by ordering simple blood tests, I am considering moving any future appointments to a different doctor. I prefer to go to an endocrinologist that has an active interest in researching acromegaly, and so I am looking into MD Anderson Cancer Center in Houston as a possibility. Although it is evident I am still in remission, I shouldn't feel that I am annoying my doctor when I voice concerns about symptoms I am having or fear returning tumor. This is especially true when it is explicitly stated on MRI results that there is an area that is suspicious for residual tumor and it is slightly larger. There is no pathological evidence to support recurrence of tumor, but this area previously measured 2mm after surgery and it is now aprox 8mm. The neurosurgeon recommends that blood work be assessed every 6 months to be sure I remain in remission - this is just standard protocol.