Medulloblastoma-PostOp
Comments
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Your case is so like my
Your case is so like my son's. He too was diagnosed with a medulloblastoma in 1985. He was 8 years old. He had surgery, which removed "everything the surgeon could see" (whatever that means), cranial-spinal radiation, and chemo (CCNU, prednisone, vincristine).
The primary long-term effect was on his pituitary gland. This included being growth hormone deficient. His adult height was 4'9". He was also thyroid and adrenal insufficient, which required daily medication. He was on growth hormone from age 10-12, which didn't really do much, except cause him to become a type 1 diabetic. He also had some mild learning disability, especially in math. Despite these challenges, he went on to live independently, go to college, and get a good job for the Department of Defense in Washington DC (we live in Ohio).
But in April of last year (2011) we got a phone call from him and could tell something was seriously wrong...confusion and speech. He lived alone so we hurried to Virginia to see what was up. In the emergency room, he had a cat scan and MRI and we were told that there was increased swelling of the brain in the area where the tumor was. It could be caused by either a tumor or radiation necrosis.
Turns out he was diagnosed with another type of brain cancer...anaplastic astrocytoma. The docs were clear that the tumor was caused by the radiation he had when he was 8 and that treatment would not make it go away, just slow things down. Surgery was scheduled but the surgeon could only get enough tissue for a biopsy. Our son had the option of going for more radiation, but at a reduced dose than is usually given for this type of cancer. Remembering how hard it was on him when he was 8, I didn't want him to have it, but David wanted to fight it all the way, so he underwent another course of radiation. It was really hard on him. He also underwent chemo both there and back here in Ohio as he was too debilitated to live independently.
David passed away about one year later (April 14, 2012).
I think it's good that your MRIs aren't showing tumor growth but I empathize with the frustration you are feeling of not being able to get a solid answer. I think "just living with the symptoms" is not an acceptable answer.
Have they mentioned radiation necrosis? My understanding is that it can be treated. I would definitely go to a major brain cancer center for another opinion (eg. Duke, NIH, MD Anderson, Cleveland Clinic, Ohio State, or any other major research/teaching hospital). According to our son's doc at Ohio State, they are seeing more and more late effects in childhood cancer survivors and it is an area of medicine that is just emerging but still lacking. He said all childhood cancer patients should be followed for the rest of their lives. Something we sure didn't know, although I don't know if the final outcome would have been different. Who knows for sure.
I sure wish the best for you. Don't give up.
Connie0 -
Connie,connsteele said:Your case is so like my
Your case is so like my son's. He too was diagnosed with a medulloblastoma in 1985. He was 8 years old. He had surgery, which removed "everything the surgeon could see" (whatever that means), cranial-spinal radiation, and chemo (CCNU, prednisone, vincristine).
The primary long-term effect was on his pituitary gland. This included being growth hormone deficient. His adult height was 4'9". He was also thyroid and adrenal insufficient, which required daily medication. He was on growth hormone from age 10-12, which didn't really do much, except cause him to become a type 1 diabetic. He also had some mild learning disability, especially in math. Despite these challenges, he went on to live independently, go to college, and get a good job for the Department of Defense in Washington DC (we live in Ohio).
But in April of last year (2011) we got a phone call from him and could tell something was seriously wrong...confusion and speech. He lived alone so we hurried to Virginia to see what was up. In the emergency room, he had a cat scan and MRI and we were told that there was increased swelling of the brain in the area where the tumor was. It could be caused by either a tumor or radiation necrosis.
Turns out he was diagnosed with another type of brain cancer...anaplastic astrocytoma. The docs were clear that the tumor was caused by the radiation he had when he was 8 and that treatment would not make it go away, just slow things down. Surgery was scheduled but the surgeon could only get enough tissue for a biopsy. Our son had the option of going for more radiation, but at a reduced dose than is usually given for this type of cancer. Remembering how hard it was on him when he was 8, I didn't want him to have it, but David wanted to fight it all the way, so he underwent another course of radiation. It was really hard on him. He also underwent chemo both there and back here in Ohio as he was too debilitated to live independently.
David passed away about one year later (April 14, 2012).
I think it's good that your MRIs aren't showing tumor growth but I empathize with the frustration you are feeling of not being able to get a solid answer. I think "just living with the symptoms" is not an acceptable answer.
Have they mentioned radiation necrosis? My understanding is that it can be treated. I would definitely go to a major brain cancer center for another opinion (eg. Duke, NIH, MD Anderson, Cleveland Clinic, Ohio State, or any other major research/teaching hospital). According to our son's doc at Ohio State, they are seeing more and more late effects in childhood cancer survivors and it is an area of medicine that is just emerging but still lacking. He said all childhood cancer patients should be followed for the rest of their lives. Something we sure didn't know, although I don't know if the final outcome would have been different. Who knows for sure.
I sure wish the best for you. Don't give up.
Connie
Thank you for your
Connie,
Thank you for your reply and I am very sorry for your loss. I have communicated on other discussion sites but have never been contacted by anyone with a similar situation. I think what is most unique in my case and at the same time most troubling is that I have had barely a cold in the last twenty years since my surgery and treatment. After my surgery, I graduated High School on time, earned a BA in Psychology, and graduated from the Police Academy. I have worked (and continue to work) in Law Enforcement for the past 18yrs and physical agility, writing, and speaking are a big part of the job. Slowly but surely my faculties seem to be deteriorating. I have read a great deal about radiation necrosis; However, it has never been mentioned to me by a doctor. I too have read it is treatable and have read many good reports regarding Hyperbaric Oxygen Chamber therapy. I have also read other reports claiming it does nothing and many insurance companies do not accept it as a recognized treatment and will therefor not pay. Radiation necrosis appears to be a difficult diagnosis to make as there are so many variations in the symptoms, many of which mimic other conditions. I guess I just need to find the right doctor. Anyway, thank you again for listening. It helps to just vent a little.0
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