Expert: Claes-Gustaf Nordquist, M.D. - 5/27/2010

Question
My son had a germ cell carcinoma when he was 11 years old and had three classic chemo drugs,cisplatin, vp 16 and bleomycin. He also had 6000 rad`s of radiation. They gave him two years to live. He also had a major bleed in the pineal lobe by the brain stem 4 months after his surgery. The first diagnosis was a teratoma, which when extracted, it was incapcilated, it had hair bone and teeth, like a twin gone wrong and when he started puberity and he began to grow so did the tumor. His whole diagnosis of the germ cell was based on an alfa feto protein reading. They all came back with a reading of 1.4 through 2.8 except one which read 76.8. This was the basis they used for diagnosis and treatment, to make a long story short, he was in rehab and had to learn to do everything again. As I stated he was given two years and that was 22 years ago. He will be 33 on his next birthday. We were told at that time there was no one that lived longer than two years. No one..so did he really have a germ cell carcinoma? Also he had a shunt revision is 96 that went badly, too much scar tissue for a procedure. Again he had to learn to do everything over again. Thankfully he is still with us but has seizures daily and is on anti siezure med`s and always will be, without a miracle. But here`s a twist that I am also confused about. My son now has hemi-facial spazm`s, progressivly getting worse. What would, (in your opinion) would start these, they started abrubtly last November with just his eye, now the entire right side is involved. He has had 14 crainiotomy`s and can have no more brain surgery`s, not that we want one. But it would turn out badly. So his neurologist recommend`s Botox injections. So we are going to try, starting with 20 mg to start by the eye, nose and mouth. I think that is what he said. I am not sure, and won`t know for sure until June 17th....Wow, that`s alot of information, I appologize, I did try to take the short way but 22 years in a few lines is as short as I could make it. So here are my two or so questions. One:...did he have a germ cell tumor or was there a misdiagnosis? Two: Is there a possiblity it will return after all these years and do they matastize? And three what cause`s hemi facial spazm`s? Four:Will botox help them?
Thank you for your time, I appreciate any help you can give.
Sincerely,
Linda Buchanan...(mother)

Answer
Do you mean that no pathology was ever done on his tumor even after surgery (I presume that at least some surgery was done before radiation therapy & chemotherapy)? If so that is a very strange situation to say the least! You tell me that his tumor was surgically removed and that it was encapsulated. Yes you also told me that his diagnosis was ONLY based on AFP evaluations but I find the very thought of no sure pathology diagnosis when surgical material is available for such a diagnosis in a case like this almost unthinkable! If that is correct of course there may have been a misdiagnosis and it probably was. There most probably was a teratoma but it may have been benign in which case all radiation therapy and chemotherapy were indeed unnecessary and useless since in that case no cancer was present. A cancer diagnosis is (so far) a pathology diagnosis and nothing else. That is why biopsies are important If no cancer was ever present we have a very good explanation for his long survival. I'm very sorry for this situation. I'm a medical oncologist & radiation therapist (and would NOT like to give any radiation therapy or chemotherapy without a pathology diagnosis of cancer) with experience of treating brain tumors but I'm not a neurologist or a neurosurgeon. So I can unfortunately not offer any theories why those symptoms have appeared and are getting worse. Nor do I have any opinion with regards to any Botox treatment. If his neurologist endorses it it is probably right. After all Botox works by paralyzing muscles so it is at least logical to assume that it may be of help. Since your son has survived this long it is probable that it will not come back but without any pathology diagnosis nothing can be guaranteed. No, metastases are not probable here. And of course a misdiagnosis is possible even probable. I do hope Botox will work!





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