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.

@colleenyoung

@markelia Thursday is almost here. I’m sure your feeling relieved and anxious that you’ll hear about the treatments options soon. Have you got a piece of paper or phone with you to jot down your thoughts and questions between now and Thursday?

@cleahy85 How’s your Dad doing?

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@markelia What did you learn at your doctor’s appointment on Thursday?

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@steveninkc

my daughter was recently diagnosed with a grade 1 pilocytic astrocytoma as well and its right on her brain stem, they’ve removed the cysts some of the tumor and fluid and in a week she is home now . Shes doing great but they want to start her on chemo (carboplatin) and i believe i need a second opinion, any help would be greatly appreciated ….

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Welcome to Connect, @lynda1992. Thank you for sharing your story!

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My daughter’s last appt revealed via an MRI that her ventricles were shrinking from her hydrocephalus. We were thrilled to see such improvement since her 2rd ventriculoustomy back in July. Her tumor showed no change. So the plan is continue to watch it. She will have another MRI in March and then every 2-3 months. We are praying that the tumor disappears. She has returned to college for the Spring semester. Thanks for checking in Colleen!

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@markelia

My daughter’s last appt revealed via an MRI that her ventricles were shrinking from her hydrocephalus. We were thrilled to see such improvement since her 2rd ventriculoustomy back in July. Her tumor showed no change. So the plan is continue to watch it. She will have another MRI in March and then every 2-3 months. We are praying that the tumor disappears. She has returned to college for the Spring semester. Thanks for checking in Colleen!

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Such great news Markelia! Thank you for coming back to tell us. We will keep you and your daughter in our thoughts.

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Adult pilocytic astrocytomas are rare creatures. Over 24 years ago I had surgery at Mayo Clinic to remove one. I was 29 years old at the time. The tumor has never come back, but I started having grand mal seizures (again) about three years ago. Mayo Clinic has a great team of doctors. Read about these types tumors on the internet, write down questions and work with the doctors there until you’re satisfied with their answers. You are the one in control.

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@lynda1992

Adult pilocytic astrocytomas are rare creatures. Over 24 years ago I had surgery at Mayo Clinic to remove one. I was 29 years old at the time. The tumor has never come back, but I started having grand mal seizures (again) about three years ago. Mayo Clinic has a great team of doctors. Read about these types tumors on the internet, write down questions and work with the doctors there until you’re satisfied with their answers. You are the one in control.

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Your story gives me hope! I’m 36 and just had surgery to remove a pilocytic astrocytoma from my temporal lobe Dec 30th. They were able to remove the entire tumor thanks to the good Lord. Now I’m just dealing with extreme anxiety… I pray it never comes back. Thank you for sharing your story. If you have any pointers on how to deal with my anxiety I would love to hear them.

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Hello. I actually had surgery to remove a grade 1 pilocytic astrocytoma from my right temporal lobe December 30th at Mayo. I did not know what type of tumor it was until after the surgery. I am 36 years old. I feel very blessed that it was operable and that they were able to remove the entire tumor. My doctor said 9 out of 10 times these types of tumors never grow back. So I am praying that it never grows back. I actually came across another 36 year old female that just had the same tumor removed from her parietal lobe last October and she is doing fabulous. Most research says these are pediatric tumors but apparently they happen in adults to.. That is unless I had the tumor since childhood and just did not know. I wish you all the best. If you have any questions please feel free to reach out to me.

Sincerely,
Jessica

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Hi everyone, my husband had surgery to remove a grade 1 pilocystic astrocytoma 4 years ago. The tumour was located in his right frontal lobe. He was 32. We still go for yearly MRI scans.

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This fall, it will be 25 years since my surgery at Mayo Clinic to remove a grade 1 pilocytic astrocytoma. The tumor was located in my lateral ventricle. I required no external treatments. My doctor thinks I was born with it. Seizures and then double vision were the two major symptoms I was having when they first discovered it. Since my surgery, I was seizure free until three years ago. I had another grand mal seizure, so I went back to Mayo Clinic. The diagnosis was head trauma, brain surgeries & scar tissue. (I was afraid the tumor had come back.) Other than being on phenobarbital again, I’m doing pretty darn good! Yes, these tumors are rare!

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Glad to have found this community as this tumour is extremely rare in adults!

Liked by thedawn5

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I was diagnosed with a pilocytic astrocytoma in the right pons. It was found during a CT scan after I lost consciousness at age 31, which is believed to be for unrelated reasons. We monitored its size with MRIs regularly. It seemed to fluctuate in size from 6 to 11 mm. In 2016, at age 36, it appeared to have grown substantially, so I had a biopsy which confirmed it was a pilocytic astrocytoma, but between the previous MRI and the surgery it shrank again. I just had another MRI, and it again appears small. They told me to come back in 18 months for another MRI since it seems so stable. How common is this, for it to shrink and grow? I wonder how likely it is that it might suddenly start growing at some point in my life.

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My daughter had low grade pilocytic astrocytoma 14 years ago came back again as another low grade pilocytic astrocytoma now she is 36 years old no symptoms found out on routine MRI.She is back to work no symptoms can drive again but MD wanrs to start her on Mekinist a clinical trial.I have concern beacause of the side effects .

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Welcome to @godofredo. I moved your message to this existing discussion so that you can connect with others talking about adult pilocytic astrocytoma. Simply click VIEW & REPLY in the email and you can read the posts from members like @jbebel @pilocysticadult32 @lynda1992 @jkenser and others.

I can understand your reluctance to see your daughter suffer from side effects, especially since your daughter is asymptomatic. Might the treatment help stop the tumor from growing? How long would the treatment protocol last? Is the tumor growing?

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@colleenyoung

Welcome to @godofredo. I moved your message to this existing discussion so that you can connect with others talking about adult pilocytic astrocytoma. Simply click VIEW & REPLY in the email and you can read the posts from members like @jbebel @pilocysticadult32 @lynda1992 @jkenser and others.

I can understand your reluctance to see your daughter suffer from side effects, especially since your daughter is asymptomatic. Might the treatment help stop the tumor from growing? How long would the treatment protocol last? Is the tumor growing?

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She just had the second surgery 3 months ago

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@godofredo

She just had the second surgery 3 months ago

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From the schedule 28 days

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