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scaredmom17 02-28-2013 12:11 PM

trying to make a decision...
I recently was diagnoised with a macroadenoma pituitary tumor, 11mm in size. At first my endocrinologist believed that with a prolactin level of 176 that I should have it surgically removed. Now with new labs in showing that my prolactin level is close to 400 my doc says its a prolactinoma and should treat with medication... I don't want to be on medication for the rest of my life... plus my husband and I are hoping to have another baby at some point and I just want to get this done and over with. Anyone out there going through this or been through it? Any advice on surgery over medication or the other way around?

BCsix 02-28-2013 03:22 PM

Re: trying to make a decision...
Hello! I personally have a non-functioning pituitary tumor but my mother was diagnosed with a prolactinoma over 20 years ago. What I know is that prolactinomas are very invasive but easily treated with medication. Some patients do however need surgery, but for a prolactinoma it really isn't the number one choice in most cases because they grow back so quickly and invade the nearby structures. My mom wasn't able to tolerate the medicine, so they have had to do 2 surgeries, one bout of the gamma knife radiation, and she just found out that it has grown back again. Of course, it is highly believed that it only grew back because she can not take the medication.

I understand your concern and struggles with medication, but honestly if you can handle the medication, it definitely is a better trade off than having brain surgery every few years. I would definitely try it out if you are willing.

As far as having another child, pituitary tumors do often make things difficult, however my mom was able to conceive my brother (who is now 17 and healthy) without 'planning' about 3 years after her diagnosis.

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