Brain Tumor FAQs

Brain Tumor FAQs

Topic: Pediatric Brain Tumors

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What is desmoplastic infantile tumor? Is it more than one different type? My nephew has this and I want to know all about it. He is just 3 months old and they find malignant cells and benign cells. What is this type?
My 16-year-old daughter was diagnosed with medulloblastoma on 8/26/08. Her tumor was 100% resected, she has completed radiation therapy, and 6 of 9 chemotherapy treatments. Six of those treatments include Cisplatin. She has completed 4 of those 6 and is due to receive her next on Mon 7/20/08. She has lost 50% of her hearing 3000-8000hz. All MRI's since the initial have shown no sign of recurrence and her spinal fluid was clear after surgery. I feel certain that another Cisplatin dose will further reduce her ability to hear. The clinical trial she is on calls for a half dose of Cisplatin at this stage (up to 40% loss at 2000hz). Conversations with other medullo patients confirms further hearing loss, whether half or full dose. I feel like I'm trading the certainty of further hearing loss for whatever increment in reduction in recurrence those remaining 2 Cisplatin doses offer. Are there any studies showing the efficacy of cumulative Cisplatin doses at this stage? Further, were you in my shoes, what decision would you make in this case? I'm trying to determine how much value the remaining 2 Cisplatin doses offer before we make a final decision regarding the next dose. Thank you in advance.
My son, 7 years old, has fainted twice. In searching for an answer, they found a pituitary cyst that they said was borderline "something" that means close to the spine. They said this is not related to the fainting. I was wondering if it is possible they are related and, also, how they can tell the cyst is not a concern. Also, would they have seen if there was a tumor during his MRI/MRA without contrast? I just do not want to waste a doctor's time with a second opinion if all the information given so far is accurate.
Is radiation advisable for a 2-year-old who was diagnosed with anaplastic ganglioglioma?
My mother had a cyst on the brain removed by Dr. Leo Davidoff in NY when she was 16. This was done 60 years ago. I'm sorry, I don't know what type of cyst it was. In the past year, she has small wires coming out of the top of her forehead. She has been to several physicians to ask about this. At first, they thought they were hairs, but a plastic surgeon biopsied the area and snipped the wires. My first question is: Did they use wires to close the wound year ago? And, she would like to know what to do with this now. No one seems to be able to give her a concrete answer. She lives in New York City. The plastic surgeon clipped the wires, but they have appeared again. She's 76 and doesn't want to go for brain surgery at this age, but she is concerned because they hurt her when she washes her face. Has anybody every heard of such a thing before? Thank you in advance for any advice you can offer. I think you sire is a wonderful source of information. Elyse Berman Delray Beach, FL 561-716-7824 elyseb88@comcast.net
CORRETCION---- My daughter was diognosed at age 12 with “astrocytoma with piloid features.” Brain stem glioma . she had surgery but the total tumor could not be removed . she is now 19 yrs old . and her dr told us yesterday that her last mri 3 weeks ago concerns him . his words ---> I am concerned about the change in enhancement characteristics now, and wonder as did the radiologists — if the character and type of the tumor has changed to something more serious. The worst case scenario would be that this is something malignant now and not curable. end of dr's quotes --- My question is should we just sit back and not worry for 3 months ?? he says NOT TOO WORRY , SEE HIM IN 3 MONTHS also there is a thick bright complete ring around her tumor that was NOT there 8 months ago . and she suffers bad headaches and bad back pain . please help with any advise you can offer . Thankyou - A very concerned Mom
An 8-year-old family member has just been diagnosed with a brain tumor behind his left eye. The neurologist says it appears to be calcified on the MRI. What does this mean in terms of the long term prognosis for this child?
My 5-year-old son had a JPA the size of an orange on his cerebellum that was resected in June, 2007. He has been having major issues with a pseudomeningocele around the main resection area. It isn't going away. Three weeks ago, he had a VP shunt inserted which was supposed to help. It has helped some, but not as much as is needed. If you have any info on this type of side effect, it would be greatly appreciated.
My 11-year-old son was diagnosed with metastatic medulloblastoma in April, 2003. He underwent surgery and Head Start II protocol (high dose chemotherapy with stem cell rescue) and then underwent 6 weeks of radiation to the posterior fosse and spine. In November, 2005, another tumor was discovered on the frontal lobe. It was removed. Six weeks of radiation was done to the frontal lobe. Chemotherapy was started: oral Temodar, IV vincristine and oral CCNU. In April, 2007, while still on chemotherapy, another tumor was found on the ventricle. Surgery was done, an an Ommaya reservoir was placed, and he has been undergoing Topetecan since April. Our doctors are considering another stem cell rescue. Ethan has stem cells from the first collection in 2003. He would only undergo the 3 days of high dose chemo to wipe out his immune system. Our only other option is to continue with Topetecan which he tolerates very well. Please advise on 2nd stem cell rescue and any studies you have read about or if this is done or not.
My 10-month-old daughter has Infantile Spasms. She has had 3 MRIs and each one shown a small cyst, with each MRI it has grown to now 1 cm in size. It is also located next/above the hippocampus. Should she be seen by a neurosurgeon? She has seizures daily.
Is a cyst and a tumor the same? What causes a cyst in the brain? How dangerous is this? Our 15-year-old has been told that he has a cyst in the brain. How can this be treated?
I am from the Philippines. My 14-year-old nephew has been diagnosed with a grade II astrocytoma. It is located on the right side of his brain so his neuro-surgeon is not very keen on operating as it may cause more harm. They will do radiation and chemotherapy simultaneously. They will give him Temodal. Based on the information I have read in most articles, that drug is usually used for high grade brain tumors. Is it really safe to use it on a grade II astrocytoma?
My 8-year-old son was diagnosed with a pineal cyst that is 14mm in its long axis on sagittal T2 image. The radiology report states that it appears homogeneous on T-1 weighted images with signal intensity just slightly greater than CSF. On the T2 weighted images, signal intensity is greater than CSF as well. I would like to get another opinion by a neuroradiologist or neurologist to confirm that the MRI was read accurately and that it is not a pineal tumor. He has an unusual gait and muscle weakness, difficulty with fine motor and gross motor skills. I was told by the neurologist that the pineal cyst has no relation to these problems. However, he does have blurry vision and requires glasses which, based on what I read, would be related. Please advise. Do you know any brain centers who have extensive experience with pineal cysts or tumors?
In April 2005, my then 8-year-old daughter was diagnosed with a brain tumor. It grew and developed a cyst within 6 months and was surgically removed. It is believed the tumor was totally removed. The RI lab graded her tumor a level 2. We asked for a second opinion and John Hopkins said it was a grade 3 tumor. How can there be this discrepancy? What are the chances this tumor will reoccur? I am looking at it as a completely removed Grade 2 or 3 ependymoma.
My son was diagnosed on June 28, 2004 with Pontine glioma with the tumor in the pons and a new spot in the cerabellum. He had 6 weeks of radiation and was allergic to carboplatin. He then did 11 rounds of temodar and that is when the new spot grew. Now he is on cloretazine; he has had 4 rounds and is doing well. We have also taken him to an herbalist who thinks what he has is a parasite. I am so confused. Has anybody ever had this or have any input?
My son finished his second protocol of chemotherapy (procarbazine, thioguanine, CCNU and vincristine) in Feb. 2005. His first chemotherapy protocol was Carboplatin and Vincristine for 12 months ending in early 2003. Both protocols showed initial shrinkage and then stability; however, his dosages were reduced in protocol II due sometimes to low counts. Sometimes his oral dosage was too much for his system and he was sick, not allowing the full dosages to be consumed. We do not know if he was able to get the full effect of the second protocol. The Grade II Fibrilary Thalamic Astrocytoma that is currently stable in the right peduncle measures approximately 2.3 cm by 2.3 cm by 2.0 cm. What do you suggest other than waiting for it to grow and then consider another chemotherapy regimen at that time. He has not yet had any radiation of any type, but is functioning well.
My 18-year-old son just received radiation for a JPA in his hypothalamus. It has been there for a long time. ow long does it take for the tumor to shrink, and what are the chances of recurrence? Do you have any studies of children who have been followed into adulthood? What are the outcomes, or where can I find this info?
My 4-year-old daughter has a brainstem glioma; it is a jelly type. What does that mean? She has just finished 6 weeks of radiation therapy with good results. Is there anything else that can be done?
My 11-year-old daughter has suffered with daily headaches for at least six years, probably longer. She would wake up throwing up and then go back to sleep or throw up in the car. Last year, I took her to the pediatric doctor and that got the ball roling to get her evaluated. Her MRI showed enlarged ventricles and the doctor said MAYBE pseudotumor. She had a spinal tap and since then has lost 16 lbs. and continues to have CDH on Topamax now. She has a possible diagnosis of NF1 due to CALs. She is missing her septum pellicidum and started puberty at age 7. I feel that the doctors are missing something as she still suffers with these H/As. No contrast on MRI. Any suggestions as to what else to look for?
I was recently diagnosed with a brain tumor, had a biopsy done, and they said they cannot operate on it. It is right above my optic nerve and does not appear to be affecting me neurologically yet. They basically gave us three options: go in for another biopsy because the first gave us barely any information, do radiation to shrink it right away but there are some risks to that, or wait until it starts affecting me neurologically before starting any treatment. What are the benefits of all of these? I am so confused.
My daughter had a JPA brain tumor removed last January. She had it for at least three years and it was a rather large tumor. It was on the right side of her brain. Could this brain tumor or the surgery be the answer to why she is struggling in reading?
My wife’s best friend's 7-year-old daughter was just diagnosed with pontine glioma on her brain stem. Every doctor we talk to here in Miami say there is no hope. I believe many are scared to attempt anything due to the lawsuits so common here in Florida. Is there anything we can do for this little girl? Are there any experimental procedures that could be attempted to save her? This little girl is her life.
My nephew has a glioma of the brain stem. He had radiotherapy at the start of the year and it shrunk the tumor. However, it has started to grow back. Prognoses to date have been negative. Is there any hope out there please? Anything new that may have recently been discovered or entered testing? He will be 7 years old in January. Many thanks Georgia Panayi London England
My son was 17 when he was diagnoised with a Central Neurocytoma. He is now 18. This is a benign, slow growing tumor type but they were only able to get out 20% of a very large vascular tumor. The tumor board suggested no further surgery. He has recovered fairly well from surgery two months ago. We are waiting for a second opinion on the debulking of the rest of the tumor. His tumor is wrapped around the arteries and that is why they do not want to do another surgery. Radiation therapy has been shown to help shrink these tumors but mostly everything I have read suggests getting more out. His tumor was 5 cm x 6 cm x 7 cm. What do you think life expectancy is for this type and for the amount that is left?
My 13-year-old daughter was diagnosed and had resection of a low grade oligodendroglioma back in 1997. They did not get all of it. She has had many MRIs since and the reports always say stable or no changes. She has continuing and worsening symptoms of seizures, migraines, headaches, stomach pain and nausea, depression and ADD. We just found out that over the last 7 years her tumor has not truly been unchanged. It has slowly grown to twice the size it was on the MRI a month after surgery. She is now awaiting a date for another surgery. Should I be upset with the doctors? Shouldn't they have caught this years ago? They say that when they do the MRIs they compare the current to the previous and do not go back to the first one. Does that seem right?

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