What advice would you give to someone who is facing surgery for a pituitary tumor?

[sherry301e79]

I was diagnosed in 2011 after a severe vertigo attack which I've been told is unrelated.  I have a nonfunctioning macroadenoma. I'm being treated at Columbia Presbyterian in nyc. My endocrinologist thinks it should come out since it is growing, was 1.5 cm when they found it and is currently 1.6 cm, I'm healthy enough for surgery, going to be 50 in October, and there is a small chance it could bleed. After reading posts, I'm scared about the post surgery.  For those of you who have had this done, what would you do differently?  Should I get a second opinion?  I'm part of a research study at Columbia that had over 200 people with the same type of tumor- I'm sure they treat a lot with other pituitary tumors as well.

[rumpled]

You can always send your papers out to other pituitary centers. Being in a study can mean your costs are down but it also means you may (or may not) be stuck in the study protocol which may or may not be the best choice. So it certainly does not hurt to know what the study entails and the follow up is as well as if you are outside the study, and compare to other centers.

Always get copies. Read. Ask questions.

[Avenger1964]

I had my surgery for a nonfunctioning macroadenoma last Friday june 7 2016. I was up and walking the next day feeling kinda rough but mostly from the anesthesia and drugs they gave me. I came home the following Tuesday but i could have left on the Monday it was just paper work and doctors holding me up. As far as meds in the hospital i took some Tylenol thats about it. I ate like a pig the whole time i was there mostly out of boredom and wanting to rebuild my self. It has been 1 week today and the sinus are good. Its like a mild sinus cold. Besides that im walking and even went for a slow ride on my dirt bike. Im driving my car since i was released. Im not suppose to be doing either but i really do feel fine. The gym is going to probably have to wait for a month. I have no regrets. Just make sure you get a neuro surgeon with experience in this surgery. With a ENT surgeon with experience also. I am 52 amd mine was 1.5 cm by 2cm. Im no expert but if your tumor is non functioning it is highly unlike cancerous. Majority of pituitary tumors are benign

[sherry301e79]

Thank you both.  I've been assured it is non cancerous- just read through blogs and posts from people who have really bad post surgery experiences and want to help and educate myself the best I can before having this done.

[cmropen]

Second opinions are popular and are often helpful to ensure you get an accurate diagnosis and more information you need to make the choice that's right for you. You might wanna check out American Society of Clinical Oncology (ASCO)'s site Cancer (dot) net and search "pituitary gland tumor" and they list lots of questions to ask about surgery, chemo, recovery and follow up care. Those may help in navigating the conversation with your doctor.