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Posts (3)

Feb 7, 2017 · It all started with a pilocytic astrocytoma... in Brain Tumor

med BBI608 3) treat with one of targeted meds that attack mutations in my son’s tumor.  He had genetic testing done on tumor.We are petrified and very confused.Thanks.

Feb 7, 2017 · It all started with a pilocytic astrocytoma... in Brain Tumor

Hello Colleen,It was confirmed as benign in 1989.  The tumor that returned at the same place in Dec. 2015 was called Grade 4 despite several benign characteristics.  After a year of treatment it appears that there is now a small recurrence at edge of surgery site.  Treatment options are to 1) remove 98% of recurrence 2) follow with clinical trial med

Feb 7, 2017 · It all started with a pilocytic astrocytoma... in Brain Tumor

Hello. Twenty-five years ago my son had a pilocytic astrocytoma completely removed from his left parietal lobe – Grade 1 benign. He was 14 years old. Doctors said it was all gone, that was the end of it, no further treatment was necessary. One year ago (my son is now 41) he had a seizure at work and MRI showed a lesion in the left parietal lobe at the site of the earlier surgery. We have had a nightmare year. the diagnosis has gone from Grade 1 to Grade 4 to “atypical, unusual, “rare-we just don’t know a lot about these.” He had the tumor removed (99%) one year ago, followed by six months of radiation and chemo. All MRIs this past year looked great – then at the one year mark, MRI showed a regrowth right at the edge of the surgical site. That’s where we are right now.

We are at a hospital in NYC that has done genetic testing on the tumor – as per my son’s neuro-oncologist, “It doesn’t behave like a Grade 4 and it doesn’t have some of the genetic markers. It does have a high proliferative index. That’s what has them all in a tizzy…yet it took a full year to return. The tumor that was removed had no necrosis, no microvasciular proliferation and surgeon saw no infiltration. In the OR he thought it was benign.

I have done so much research on pilocytic astrocytomas in the last year and I know they are truly unique tumors that present in many different ways. Nevertheless, we are all confused and must now figure out what to do about this regrowth.

Twenty-five years asymptomatic…