Teen daughter 2cm x 1.1 pituitary tumor: Any advice?

Hello @reilly3 and welcome to Mayo Clinic Connect.

I am so sorry to hear about your daughter. I think you are definitely on the right track getting an appointment for her at Mayo Clinic. In fact, Dr. Bendock did a Q & A on pituitary tumors here on Connect. I have included the link below if you would like to watch it.
https://connect.mayoclinic.org/event/pituitary-tumors-26deda/
What symptoms did your daughter have to prompt an MRI?

Hi @reilly3, how did the appointment go? May I ask what you learned about next steps? How are you doing emotionally?

Hi. After receiving an MRI showing a macro pit tumor in New Mexico almost 3 weeks ago, we were told it's not serious and that a Neurologist would follow up (still haven't received a call). We contacted Mayo, got an appointment in Phoenix, and within a 24 hour period my daughter got blood work, a CT scan, an opthalmologist appointment, two separate MRI's, and a diagnosis. A macro prolactinoma causing a prolactin level of 470 (23 max normal range) being the culprit. We have a telehealth appointment w Endocrinology next week to start Dopamine Agonist meds in hopes the levels can be brought into range and tumor will shrink. Dr. Bendok was optimistic because the tumor hasn't affected vision and that if surgery was needed, he felt the placement was accessible.
Still trying to process everything but I just wanted to say how grateful we are for the Mayo Clinic! They treated our daughter like the special person she is and I feel 100% confident moving forward no matter what the journey details.

I was diagnosed with a 7mm micro adenoma in my pituitary in 2013 and I saw Dr. William Young and Fred Meyer from the Mayo Clinic in Minnesota. I had Cushing’s syndrome and my Cortisol was 16x higher than normal. Fred Meyer and his team of surgeons performed a transphenoidal resection and removed the irregular cells. There were no complications following the surgery. I was on Hydrocortisone 5mg for about 3-5 months while the pituitary cells grew back. My Comorbid conditions disappeared, and I lost 108 lbs. I owe Dr. Young, Dr. Meyer (Chair of Nuerosurgery), and Dr. Chen (Surgeon), a debt of gratitude- their care truly saved my life.

I also had Cushing's Disease, tumor on my pituitary. Had a similar experience. I had my surgery in Houston TX at Methodist Hospital. I am so thankful for my endocrinologist who diagnosed me. She thinks I probably had it for 5 years but no one figured it out.

@wellsjkw @drs22 It so good to hear that both of you had successful pituitary surgery! My daughter had same 2010 at UVA, Charlottesville, VA. They thought she may have had it for a few years, symptoms coming and going.
The three of you had surgery at major health centers with pituitary centers.
Unfortunately, there are others who had less specialized surgeons and ended up with tumor recurrence.

@reilly3 - What a positive outcome that the tumor can shrink when treated with medication ! Wishing your daughter a full recovery!

@reilly3, just checking in to see how you are doing. As you can see, members like @wellsjkw @drs22 @astaingegerdm and @susanaz and others are at the ready to answer any questions as you and your family go through this journey. Ask any questions or just let us know if you want to know someone is out there listening.