Has anyone been diagnosed with a pilocytic astrocytoma as an adult?

Posted by cleahy85 @cleahy85, Mar 24, 2016

Our neuro-surgeon would like us to get more information and other opinions for treatment options. The patient is 53 years old and the biopsy showed that the tumor is grade 1. We are trying to figure out what steps should be taken, he has already had a ventriculostomy. We keep reading how rare this is. Just curious if the Mayo Clinic has seen patients with this type of tumor? One article I read says there have only been roughly 900 since 1973.

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Markelia | @markelia | Sep 22, 2019

My daughter was diagnosed with the same tumor 8/25/16. It is inoperable given the location so we are just watching it.

thedawn5 | @thedawn5 | Sep 23, 2019

In reply to @markelia "My daughter was diagnosed with the same tumor 8/25/16. It is inoperable given the location so..." + (show)

My son 21 years old now has the same diagnosis 6-21-17 (at 18 yrs old). His tumor is mid-brain 1.5 cm approx., between the 3rd and 4th ventricles, slow growing. We were told same thing as you (midbrain and inoperable due to risk versus benefit), and the fact that it is fairly small and not affecting in any way (thank God) except his left eye. Doctors couldn't even do a biopsy due to the location. The tumor is on the right side midbrain and affecting his left eye. Doctors are watching since we found out. Going on his 8 MRI scheduled in January, 2020 since diagnosis. How is your daughter doing, Markelia? Prayers, time, faith and hope .......... many prayers ..............

thedawn5 | @thedawn5 | Sep 23, 2019

In reply to @thedawn5 "My son 21 years old now has the same diagnosis 6-21-17 (at 18 yrs old). His..." + (show)

Oops he was 19 years old when diagnosed with tumor.

lynda1992 | @lynda1992 | Sep 23, 2019

In 1992, I was diagnosed with an intraventricular pilocytic astrocytoma. The tumor was located inside my lateral ventricle. Basically, the center of my brain. A doctor at Mayo Clinic, Dr. Patrick Kelly, successfully removed the entire lesion. Dr. Kelly isn't at Mayo Clinic anymore. From what I've gathered, he's retired, too. Here I am, 27 years later, still going strong! I would get a second opinion. If you haven't already. Or maybe your daughter's neurologist can refer her to someone. That's how I met my doctor. Keep me posted.

Lisa Lucier, Moderator | @lisalucier | Mar 18, 2020

In reply to @markelia "My daughter was diagnosed with the same tumor 8/25/16. It is inoperable given the location so..." + (show)

Hi, @markelia - wondering how things are going for your daughter? How are you?

thedawn5 | @thedawn5 | Mar 29, 2021

How is your daughter doing? My son who will be turning 23 this June has a midbrain inoperable pilocytic astrocytoma as well. We have know about his tumor since he was 19. Tumor is the same size but since last MRI on 2-4-21, it shows striking increased degree of enhancement involving the entire tumor - possible neoplasm? Told monitor & follow-up. Next MRI is May 6. Watch, wait & see. God be with all our children and family members that are dealing with this.