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.

@godofredo

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

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@colleenyoung

@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.

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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.

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@sparky0114

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.

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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.

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@kmr3

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.

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

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@lorena1963

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

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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.

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I was diagnosed with a pilocytic astrocytoma in July of this year. My PCP ordered an MRI and they found multiple masses in my left cerebellum. I met with a neurosurgeon and he wanted to perform surgery to remove as much of the masses as possible. My surgery was only about an hour long and the neurosurgeon told my family that he believed it was only cavernous malformations. He removed a small portion and had it biopsied in Rochester.

Quick fact: my brother has had a meningioma on his frontal lobe. His was the size of a grapefruit. His journey started with a seizure out of nowhere in 2009. He had it removed and is doing well now with the exception of the occasional seizure. He actually became a nurse recently.

Three weeks after my surgery I was having low grade fevers and a resting heart rate of over 120. I went to the ER and they ran multiple tests as well as an MRI and CT. They found nothing wrong with me. I followed up with my neurosurgeon and he gave me the news that it was in fact a grade 1 pilocytic astrocytoma after having received biopsy results from Mayo – Rochester.

My neurosurgeon's plan moving forward was to remove as much of my left cerebellum as possible because he believes that tissue is compromised. We went to Phoenix to have a second and third opinion.

Our second opinion said that this was rare in adults, but basically the "cyst of tumors". They said they would go back in and remove the part of the tumor that was biopsied and leave the rest as they didn't want to disable me. They said my recovery would be about 6-8 weeks with minimal side effects. They did say that I need as much of my cerebellum as possible in order to live a normal life.

Our third opinion at Mayo Clinic in Phoenix had me get a new MRI and reviewed the images with us. The neurosurgeon says that he thinks the tumor may be somewhat diffused and it will be more complicated to remove. He took my case to the tumor board and they recommend not moving forward with surgery because the tumor runs through the middle of my cerebellum and the risk of injury is high. My neurosurgeon still thinks surgery is a possibility. The neurologist mentioned that my tumor has the BRAFF mutation and recommended using chemo meds to shrink the tumor as a secondary option.

Any feedback would be greatly appreciated. I think we will be moving forward with Mayo since they took the time to really examine my case. From what I have researched, this type of tumor in adults is fairly rare and even more rare with the BRAFF mutation.

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@lynda1992

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.

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@lynda1992
If you don't mind me asking a personal question.. Did you have children after your diagnosis? I am wanting to have a baby, but scared that it will put me at a greater risk of recurrence. Just curious if other women have had babies after having their pilocytic astrocytoma removed.

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@ryanmfisher

I was diagnosed with a pilocytic astrocytoma in July of this year. My PCP ordered an MRI and they found multiple masses in my left cerebellum. I met with a neurosurgeon and he wanted to perform surgery to remove as much of the masses as possible. My surgery was only about an hour long and the neurosurgeon told my family that he believed it was only cavernous malformations. He removed a small portion and had it biopsied in Rochester.

Quick fact: my brother has had a meningioma on his frontal lobe. His was the size of a grapefruit. His journey started with a seizure out of nowhere in 2009. He had it removed and is doing well now with the exception of the occasional seizure. He actually became a nurse recently.

Three weeks after my surgery I was having low grade fevers and a resting heart rate of over 120. I went to the ER and they ran multiple tests as well as an MRI and CT. They found nothing wrong with me. I followed up with my neurosurgeon and he gave me the news that it was in fact a grade 1 pilocytic astrocytoma after having received biopsy results from Mayo – Rochester.

My neurosurgeon's plan moving forward was to remove as much of my left cerebellum as possible because he believes that tissue is compromised. We went to Phoenix to have a second and third opinion.

Our second opinion said that this was rare in adults, but basically the "cyst of tumors". They said they would go back in and remove the part of the tumor that was biopsied and leave the rest as they didn't want to disable me. They said my recovery would be about 6-8 weeks with minimal side effects. They did say that I need as much of my cerebellum as possible in order to live a normal life.

Our third opinion at Mayo Clinic in Phoenix had me get a new MRI and reviewed the images with us. The neurosurgeon says that he thinks the tumor may be somewhat diffused and it will be more complicated to remove. He took my case to the tumor board and they recommend not moving forward with surgery because the tumor runs through the middle of my cerebellum and the risk of injury is high. My neurosurgeon still thinks surgery is a possibility. The neurologist mentioned that my tumor has the BRAFF mutation and recommended using chemo meds to shrink the tumor as a secondary option.

Any feedback would be greatly appreciated. I think we will be moving forward with Mayo since they took the time to really examine my case. From what I have researched, this type of tumor in adults is fairly rare and even more rare with the BRAFF mutation.

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@ryanmfisher
I'm sorry to hear about your diagnosis. It will be two years next month since my diagnosis and surgery. You are definitely at the right place. Mayo clinic is ranked number 1 in the world for a reason. I had 2 other hospitals tell me my tumor was inoperable and Mayo clinic completely removed it. I went on to finish my Doctorate and am now a Nurse Practitioner. I recommend Mayo to all of my patients that have a serious condition.

They say our type of tumor is rare in adults, but I talk to 2 women in my local area alone that had one recently. Maybe we had them since childhood and did not know. I would definitely stick with Mayo. If you ever need to talk or just need to vent I'm always here. I know first hand how scary this can be.

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@jkenser No, I never had any more children. But, I was pregnant before my diagnosis. Before I even knew I had a brain tumor. Looking back, I remember having a seizure during my first trimester. Hormones. I blame the seizure on changing hormones. I'm no doctor, but with the research I've done, I feel the seizures I started having, again, are due to hormones, chemical changes in the brain and/or stress.

I would definitely talk to your doctor/neurologist before getting pregnant. Especially, if you're on any anti-seizure medication. Taking these drugs can/could cause birth defects.

How long has it been? How old are you?

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@lynda1992

@jkenser No, I never had any more children. But, I was pregnant before my diagnosis. Before I even knew I had a brain tumor. Looking back, I remember having a seizure during my first trimester. Hormones. I blame the seizure on changing hormones. I'm no doctor, but with the research I've done, I feel the seizures I started having, again, are due to hormones, chemical changes in the brain and/or stress.

I would definitely talk to your doctor/neurologist before getting pregnant. Especially, if you're on any anti-seizure medication. Taking these drugs can/could cause birth defects.

How long has it been? How old are you?

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@lynda1992
Thank you for responding. I have talked to my doctor at Mayo and she says it is safe, but it still scares me. Thankfully i'm not on any seizure medications. It will be 2 years next month since my tumor was fully resected. I am blessed with one child already, a 15 year old son. I always wanted more and am running out of time, I just turned 38 last month. I just wanted to see if someone else has had a baby without issue after going through what we went through. Like I said, I am blessed with one so maybe that should just be enough. Thank you again for your response.

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@ryanmfisher

I was diagnosed with a pilocytic astrocytoma in July of this year. My PCP ordered an MRI and they found multiple masses in my left cerebellum. I met with a neurosurgeon and he wanted to perform surgery to remove as much of the masses as possible. My surgery was only about an hour long and the neurosurgeon told my family that he believed it was only cavernous malformations. He removed a small portion and had it biopsied in Rochester.

Quick fact: my brother has had a meningioma on his frontal lobe. His was the size of a grapefruit. His journey started with a seizure out of nowhere in 2009. He had it removed and is doing well now with the exception of the occasional seizure. He actually became a nurse recently.

Three weeks after my surgery I was having low grade fevers and a resting heart rate of over 120. I went to the ER and they ran multiple tests as well as an MRI and CT. They found nothing wrong with me. I followed up with my neurosurgeon and he gave me the news that it was in fact a grade 1 pilocytic astrocytoma after having received biopsy results from Mayo – Rochester.

My neurosurgeon's plan moving forward was to remove as much of my left cerebellum as possible because he believes that tissue is compromised. We went to Phoenix to have a second and third opinion.

Our second opinion said that this was rare in adults, but basically the "cyst of tumors". They said they would go back in and remove the part of the tumor that was biopsied and leave the rest as they didn't want to disable me. They said my recovery would be about 6-8 weeks with minimal side effects. They did say that I need as much of my cerebellum as possible in order to live a normal life.

Our third opinion at Mayo Clinic in Phoenix had me get a new MRI and reviewed the images with us. The neurosurgeon says that he thinks the tumor may be somewhat diffused and it will be more complicated to remove. He took my case to the tumor board and they recommend not moving forward with surgery because the tumor runs through the middle of my cerebellum and the risk of injury is high. My neurosurgeon still thinks surgery is a possibility. The neurologist mentioned that my tumor has the BRAFF mutation and recommended using chemo meds to shrink the tumor as a secondary option.

Any feedback would be greatly appreciated. I think we will be moving forward with Mayo since they took the time to really examine my case. From what I have researched, this type of tumor in adults is fairly rare and even more rare with the BRAFF mutation.

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My daughter now aged 25 was diagnosed with a Grade 3 PXA 4 years ago. She had radio and multiple operations and is still with us and in good shape. Key to this was that she too had the BRAF mutation. She was treated with Dabrafenib and more recently Dabrafenib in conjuntion with Trametinib. These drugs worked wonders, shrinked the tumour and kept it at bay for a comined total of about 2 1/2 years, with very manageable side effects. Clearly everyones situation is different but I thought I would mention our experience in case it helps in some way. All the best with it. .

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I am 39 yrs old, had brain surgery in Feb and diagnosed with pilocytic astrocytoma ( after they did biopsy on the tumor). The surgery had removed big portion of the tumor. I just did MRI and CT scan from brain to spine. Doctor told me the tumor is growing and recommend for radiation therapy immediately. i am confused because they told me this is low grade tumor and should be stable/slow growth. ..anyway, I am looking for second opinion at MAYO. Any doctor can recommend for my case? thank you.

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Hi – brain tumors are very scary! I also have a pilocytic astrocytoma, diagnosed 11 years ago after 3 brain biopsies at Mayo in Rochester. First biopsy diagnosed it as another type of tumor, second was done because symptoms didn't match first biopsy diagnosis. Second biopsy missed tumor altogether. Third (with different neurosurgeon) yielded piolocytic astrocytoma diagnosis, which seemed to fit. So recommendation was just to watch and wait. After 10 years of brain MRIs with decreasing frequency, I was released from neuro, and have been fine, but always nervous (in back of my mind) that symptoms will crop up. Tumor was initially found because I developed accute hydrocephalus, and had to have shunt implanted. I am 68 now, and wish you the best.

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My daughter was diagnosed with a Pilocytic Astrocytoma benign brain tumor located in the center of her brain causing it to be inoperable.

Has anyone with a brain tumor experienced hair loss? We discovered a completely bald spot on her head and she has no sense of feeling in that spot.

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Hi @markelia you may have noticed I moved your post to this existing discussion where others are discussing pilocytic astrocytomas so that you can see what others have said about these tumors. Simply click VIEW & REPLY in your email notification to get to your post.

@markelia that must be so confusing and nerve-wracking for your daughter to have the bald spot with no sense of feeling. @jvertalka, @dgruk and @jkenser all have experience with this benign brain tumor and may be able to share their experience.

Have you had a chance to ask your doctor about this hair loss? How is your daughter being treated at this time?

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