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

Hello @lorena1963
Welcome to Mayo Connect. I am glad that you found this site.
Could you share the name of the chemo pill your doctor is considering? Perhaps another member will be familiar with it and respond to your question.
What is your most difficult symptom right now?

It is Temozolmide I think. The biopsy says one thing along with the spectroscopy but the tumor is still growing they think. It's being scared. I am no more special then anyone else. They found it in 2004 and watchu for so long. I am in uncharted territory for myself. Not to be long winded, I left my husband in February as he was addicted to opiods lost our house and a bunch of other things happened. Just really scared of being on my own I am so blessed. I have a wonderful church family and living situation with one of the families.

I don't want to sound like I am whining I am blessed

I was diagnosed with a Pontomedullary Pilocytic Astrocytoma in 2008. Had surgery and they took enough for a biopsy. I am one of the lucky ones so far that has minimal symptoms such as speech impediment, slight facial drooping. I am on watch and wait and no further growth since the operation. My NO has me coming in every 2 years now for MRI. I did have surgery in 1977 for a cyst that was in the same location that they drained. Had to learn to walk and talk all over again at the age of 12. So 31 years later it came back as a tumor.

@sparky0114, welcome to Connect. That must have been frightening to have to learn to walk and talk all over again at age 12. Do you remember vividly?
Quite incredible that the malignant tumor is causing fewer side effects.

@godofredo
Just wondering how your daughter is doing? Was her surgery a success?

Hi Colleen. I do remember it being scary for me as a child but I also didn't really understand all of it. I didn't know if I was going to be "normal" again or not! I remember my nurses and how wonderful they were to me. Also my grandma was by my side almost every day at the hospital which was a couple of hours away from her house. I don't remember the procedure or pain much. The tumor I have now is benign so the side effects I have now are from my 1977 surgery for the cyst. I didn't really have any additional ones after my surgery in 2008.

Weird, I found this thread because I was searching for “pain above eyebrow”. Huh. But, yes I did have a pilocytic astrocytoma, found at age 37! I had one seizure and went to the E.R. The CT scan did not see anything, but they recommended that I make an appointment for an MRI. The MRI found a “spot” or a “lesion,” as it was referred to, in my left temporal lobe. The neurosurgeon I spoke to didn’t seem too knowledgeable or experienced with brain tumors, so I decided to go to Mayo, and I am so glad I did. My Mayo brain tumor experts did not know what type of tumor I had. It was estimated to be low- or mid-grade. I asked about biopsy, but the surgeon said that in my case a biopsy would be just as invasive as a surgery to attempt to remove the tumor. Luckily my tumor was relatively small, so it was up to me whether or not I wanted surgery. I decided to go for it: I had good health insurance, and I wanted to fight the thing before it had time to get any worse. The tumor was 100% removed, and it turned out to be pylocytic astrocytoma. So, no radiation or chemo needed. I can’t believe how lucky I was. Now my only issues are that I have to stay on anti-seizure medication, I have some muscle atrophy in my right temple (cosmetic issue), and I get some headaches in my left temporal area. Oh, I found out that I am not eligible to donate bone marrow, but I am still eligible to donate blood.

How long have you had it now? They found mine in my early 40s and I am 55 now

They found my pilocytic astrocytoma was I was 29 years old. I'm 56 now. I had surgery at Mayo Clinic in Rochester. My doctor thinks I was born with it.