The drive was easy, the weather was pleasant, and I visited with some friendly folks while I was at M.D. Anderson Cancer Center. It is a nice hospital, and the staff is helpful and accommodating. It was, however, rather somber because it was evident that people were fighting for their lives everywhere I looked. Other patients I met traveled from out of state to see a doctor about their problems. I didn't feel like I belonged there and kept thinking I was not that sick. Even still, I had a good experience, and I am glad I moved my follow-up care there.
First, here's some pictures from my trip to Houston:
It was icing over in Dallas when I left...
but it looked like spring in South Texas!
Here were some of my questions for the endocrinologist and the answers I received:
Q. Is there any sign of pituitary failure or hypothyroidism? No, my thyroid is functioning well - all the labs came back normal.
Q. I was not able to nurse my daughter beyond 7 months postpartum because my milk production was so low. Why did this happen? He really didn't know - there is no evidence that suggests an existing pituitary condition caused this. Sometimes it just happens.
One of the reasons I went to M.D. Anderson looking for a new doctor is because my endocrinologist in Dallas said that a normal IGF-1 means there is no tumor. Therefore a patient doesn't need to have the Growth Hormone Stimulation Test. He believes a normal IGF-1 is sufficient to determine whether a patient is in remission from acromegaly. While I understood what he was saying it was a red flag to me because I had a normal IGF-1 with an abnormal GH test before surgery. My new endo says I have residual tumor, and he spent a lot of time explaining what he thought was going on. When I saw him last month, I didn't have my past MRI scans or records. I mailed them after my appointment and have been waiting for his response to my other questions:
Q. During my appointment it was mentioned that you think I have residual tumor. Now that you have reviewed my medical history and MRI scans do you still have this opinion? The doctor suspects there is residual tumor in the left cavernous sinus and that it is non-functioning or making GH to such a small degree that it's clinically irrelevant.
Q. Is a nonfunctioning/functioning tumor "better" than a full blown GH or prolactin tumor? Is it less agressive because it is only partly functioning? Nonfunctioning tumors can be aggressive in terms of growth (hard to predict) but my tumor is not clearly overproducing GH to warrant medical therapy. The plan will be to carefully monitor the residual tumor's growth, and if that happens, we can consider radiation.
The doctor believes there is evidence of residual on the MRI scan even though it is not seen in the blood work. I am over the shock of hearing that I have tumor, so I was not upset when he told me this. He says my tumor is partially functioning, which means it was not consistently producing excess GH or prolactin presurgery. He believes there is evidence of this in the tumor pathology and that I had a normal IGF-1 lab before the macroadenoma was removed. He thinks the residual left is not functioning right now, which is why my blood work is normal. The tumor could start functioning again, but right now it isn't. It's unusual for a person to have a partially functioning tumor. Most people have one or the other. What he said makes sense, and it explains why my IGF-1 levels were mild (barely elevated). He mentioned residual tumors could cause insulin resistance, but there's no evidence in the blood work to support this. Diet is the only way to control the episodes - eat small meals throughout the day and watch my carbs intake.
Since the remaining tumor in the left cavernous sinus is inoperable, the only options are to treat it with medicine or proceed with radiation. There is no excess GH or prolactin hormone to suppress, and radiation treatment could damage my pituitary gland so the doctor recommends we watch it. There is no need to do anything right now. As crazy as it seems that I can safely live with tumor on my carotid artery, he assured me it is okay. It's growing slowly, and he does not think it will erode the artery or invade my brain. At this time, it looks like I'll be going to Houston for any future check-ups. I'll return to M.D. Anderson in 6 months for a repeat MRI and bloodwork.
