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anaplastic ependymoma in 6yo?

My son has this week been diagnosed with this as a brain tumour that was believed to be a more treatable form of cancer didn't respond to treatment & started spreading down his spinal cord. I've been given a poor prognosis (less than 10% chance of survival)because of the location of the tumours & lack of response to treatment he's already had) a few treatment options but the most recommended drug (because it has failed to respond to other chemo agents) has some pretty nasty side effects that will affect him life long - my son who was previously assessed as being gifted & talented will most likely have memory & cognition problems. There is also a possibility that because their is a natural barrier between the brain & blood systems that may be the reason that the chemo he has had to date has had no effect - that the medication is not able to reach the tumour.

Anyway, my question is, do you risk brain damage being done in trying to reomve some of the tumour which may or may not buy more time (the tumour is right near the brainstem & several other important areas) or hope that somehow medication can stop the growth even though that hasn't been the case & it is starting to have some effect on coordination etc.

Update:

I do not want professional opinions - I have them from several opinions of the tumour & several in depth meetings with specialists - I know all the options & the effects of each & it has been left to me to make the decision re surgery & further medication etc.

I am more looking for personal experience or what other would do for their children. FWIW he was born very premmie & already has cardiac/lung problems as well as a digestive system that will cause problems. The main issue for me is that his quality of life will be negatively affected no matter what road we choose - the problems to do with cognitive & memory issues will be substantial & will impact on his life starting pretty much with immediately - not just in the long term.

Update 2:

also, the chemo in particular he has already had has made him extremely sick , largely because of his other issues & the new drugs they would now be using are far more destructive than the last lot he has been on & since he had the first attempted removal of the tumour the growth of tumours increased rapidly.

3 Answers

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  • Panda
    Lv 7
    1 decade ago
    Favourite answer

    You need a second opinion and maybe even a third. I am unsure why you would ask such a critical question regarding the precious life of your baby on Yahoo Answers.

    Options include surgery followed by proton beam therapy to kill off the residual growth. In general, chemo is not offered to treat this type of brain tumor until after surgery.

    Proton beam therapy following resection for childhood ependymoma

    http://www.springerlink.com/content/q3452470607428...

    Sorry that you are going through this and you have a tough decision to make . . . you make the best choice for your son and your family . . with no regrets. If your child is at the point where further treatment is just going to harm him than I think you know the answer about what to do . . but if your child can withstand further treatment and still maintain a good quality of life . .than the chance is justified. No one can answer this question for you. There are no 'right' or wrong answers in this situation.

    You may find supportive help online and locate other parents in similar circumstances. Remember that children can withstand higher rates of treatment and bounce back better than adults . . so while treatments may be horrendous for someone older children seem to be able to handle it better. So do not base your decision on how you would feel with this treatment but base it on what you know your child can undergo.

    Ependy Kids

    http://ependykids.com/

  • 1 decade ago

    Wow. First of all, you have my sympathy for what sounds like a devastating situation.

    Clarification? It sounds like he has been treated for another cancer already and now this new location/tumor type has been found. Is that right?

    For your question: This is a very common dilemma in pediatric oncology. Weighing benefit and risk is not easy. Heavy chemotherapy often causes sterility in children, for example. The surviving child then has a problem to deal with than may have major effects on his adult life. Other long term side effects may be the increased risk for additional cancers that come up later, or cardiac or pulmonary problems. Most parents will accept these risks for their child.

    Treatment that will effect memory and cognition is a little more difficult. However, most of us here on this planet are living happy fulfilled lives without having a genius IQ, and dealing well with our learning disabilities, short attention spans, etc., though some people definitely have severe problems.

    Consider the fact though, that these problems will show up in the long term, not in the next year or so. If you are buying time with chemo, the long term side effects may never show up, and it may be the short term side effects that will influence your decision more.

    I wish your little guy the best in whatever treatment he has.

  • 1 decade ago

    Hello. Firstly let me say I am sorry for your news. I highly doubt that any of the answers you will receive on here will be of any use to you whatsoever, as I doubt anyone who is specialist enough to answer such a question resides here.

    You need to go and speak with a specialist, who can see the images which have been taken. You probably are scheduled in to see such a person, and I know the wait is long and painful, but no onee will be able to tell you what damage could possibly be done without seeing some MRI or CT images of your sons brain.

    I too hope that a mixture of medication and surgery will halt the spread of the cancer, and my thoughts and prayers are with you.

    Source(s): I am a doctor, although by no means specialist in treating such conditions.
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