Adult Pineoblastoma?

Hi All,

  I am new here but have been browsing through the posts for the last few days. Here is my story, with some questions at the bottom of it.

 It all started May '07. We came back from a family vacation and Dad thought he had eaten something which made him feel naseous. He went to the doctor and they sent him for a colonoscopy and the other one down the throat. They found nothing and couldn't explain the nausea. He NEVER had a headache. In July '07 Dad was acting REALLY wierd. He was confused and not doing things that he always does. This was concerning to us so we took him to the ER. They performed a CAT scan and found a mass in the Pineal Gland region of the brain.

He required a VP shunt for the hydrocephalous that had developed. They originally said that this type of tumor was unseen in adults and is normally a pineocytoma, a non-malignant, slow growing tumor which can be treated with radiation. YaY!

Or so we thought. He went through 30 cycles of radiation and the tumor had responded and was 30% of the size it originally was. We were so happy. However, in March Dad was having nausea again and we were concerned. We went to the neuro-surgeon and he thought there was a shunt issue. Back to the hospital for a shunt redo, but while we were there they did another MRI to check. The ventricles all looked normal but the original tumor had very rapidly regrown to its original size and the cancer had now metasticized to the CSF and his brain and spine.

Now all of a sudden we went from a non-malignant slow growing tumor to a HIGHLY malignant rapidly growing tumor with leptomeningeal disease. We went from him being good to him being dead in 4-6 months!

How do I let go of the anger with the doctors for not knowing what was going on and doing something to stop the cells from growing? I want to do what is best for my Dad and I am his only caregiver but I am SOOOO mad at the original doctor for not seeing this.

Thanks for listening and if you have any experience with this please let me know. I never hear anything about leptomeningeal disease from any other family members.

Thanks

Suzy

I am new to this message board too.  When he first started having symptoms, it was nausea and a metallic taste in his mouth. We went to our family doctor and they thought it was an infection so they put him on antibiotics.  Well,  after several days the symptoms got worse and one of our family members insisted that we get an MRI or Cat scan done.  So with a lot of pushing, we got them and found out that he had a brain tumor.  At first the Dr's thought it was benign and a common brain tumor.  After surgery the Dr.s still thought it was benign and common.  After the pathology reports came back, we found out it was malignant and rare.

I wrote all of that to let you know that the Dr.'s don't always know until they can research it.  Also, they don't always know how to treat rare cancers because all of the clinical trials are done for more common forms of cancer.My husband and I found out that since his type of tumor is rare that they do not have any clinical studies for it.  They are trying to save the masses..not the few.

I am not saying all of this to depress you, as there is still hope. Get your Dad to a specialist.  Your best bet is to get him to treatment center,closest to you, that focuses on brain tumors..  I have 2 books that list all of the facilities in the back. One is Living With a Brain Tumor by Dr. Peter Black and the other is and the other is Brain Tumors: Leaving the Garden of Eden by Paul M. Zeltzer.

I know this is log winded, but one las thing...The Dr's will always tell you that a BT is unique to each person. What works for one may not work for the other.

Please keep me posted on your Dad and let me know what you decide to do.  I will be thinking of you and your family during this difficult time. Keep looking for answers!!!

Michelle