A fascinating discussion of two patients with residual pituitary tumors and their unpredictable differences; one stable for nine years after surgery; the other one grows back in five months bigger than the original.
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Has anyone done a study of tumor growth as it relates to diet? I am convinced that my tumor has not grown back because I am not feeding it animal protein, but I would love to see some evidence.
I found this discussion very interesting. I was diagnosed with NF pituitary adenoma 14 years ago. I had transhenoidal “debulking” surgery (Mt. Sinai, NY) at the time and significant remnants were left, specifically in the cavernous sinus. I was left with panhypituitarism after the surgery. Have been following up with annual MRIs especially to assess the distance from the top of the tumor to the optic apparatus. I’m 74 years old. The residual tumor has grown from about 1.4 cm to now 1.8 cm after 14 years and is now 0.4cm from the bottom of the optic apparatus. I am now 74 years old. There have been no predictions about the pace of growth or future growth. The largest spurt of growth was when I was on Growth Hormone and I stopped it, but the causation was purely speculative. I have been offered repeat surgery or continued surveillance. I have opted for the latter. My question is whether to go for surgery now, at age 74 when it might be well tolerated (as opposed to in my 80s) or “play the odds” and continue surveillance hoping that repeat surgery might never be necessary.
Very interesting musings, Dr. Blevins! I fit the category of that first patient remarkably well. Currently treated with both pegvisomant and lanreotide. I am seven years post-surgery and feel great. Neurosurgeon who did surgery orders MRI’s annually. Endocrinologist checks Igf-1 twice a year; with treatment, it continues in the normal range. It’s been two years since my last MRI, and my wonderful neurosurgeon has retired. How important do you think it is to go ahead and get a new neurosurgeon to be on my “team” now? Currently there is no one in my state qualified to do this surgery, should it ever be needed again. With your comment about the “unpredictable differences” in the cellular biology of the different tumors, I don’t want to take for granted that the tumor won’t grow again. Thank you for your thoughts, Dr. Blevins!
I am hypopituitary after surgery for a macroadenoma with apoplexy 3 1/2 years ago. You mentioned one of your patients went undiagnosed for their acromegaly for 25 years. Whether it is lectures, podcasts, or Facebook groups, the one common thread is that many pituitary patients are undiagnosed or misdiagnosed. This is occurring, not only by PCP’s, but by endocrinologists as well. Obviously, this has lead to a great deal of suffering. I am lucky that I live 20 minutes from a major medical institution that has a pituitary center.
Is there anything being done to educate PCP’s and endocrinologists to, at the very least, recognize signs and symptoms of pituitary disease to make to proper referral?