Malignant schwannoma

[Nini01]

 Malignant schwannoma in frontal and ethmoid bones. They said this has a very bad prognosis ... What do you think???
Surgery before radiotherapy or radiotherapy before surgery?

[Sam Rush]

Have you had prior radiation for acoustic neuroma??

[russ]

Hi Nini
  This is very rare. Where are you being seen as a patient? How large are the tumors and have you been screened bodily for other tumors? Sam asked a good question also.
   Russ

[jamie]

How do they know it's malignant? Did they biopsy it? Intracranial malignant nerve sheath tumors are extremely rare indeed, and the frontal ethmoid is a very uncommon site for them in the sinuses. They are more common outside the skull in people with NF-1. Prognosis is dependent on whether they can remove it completely, age, etc. They generally do not respond to radiation to my understanding, but that info is based on the few cases there are. If it is truly a malignant schwannoma, you may want to contact the University of Texas M. D. Anderson Cancer Center. It's just a shot in the dark, but they have been testing some new things such as Delta-24-RGD, http://www.scienceblog.com/community/older/2003/B/20037132.html  If I had a malignant schwannoma, I would certainly look into all new options available. 

Have you had prior radiation for acoustic neuroma??

I think the location of Nini's tumor is miles away from any radiation exposure from radiosurgery for an AN to possibly be causitive. It's in the sinuses. Perhaps if she had whole brain radiation therapy a long time ago, but I doubt hardly anybody uses that anymore for benign tumors.

[Nini01]

Have you had prior radiation for acoustic neuroma??

Thank you Sam. Is not me the patient (thanks God), but is a friend. We are in Portugal. She is 57 years old. The diagnosis was made by biopsy (analysed in Boston). She had no radiotherapy before surgery. She has been operated first by the nose to extract a little tumor and ten days ago to try to extract the tumor: she had a partial ressection of the frontal bone. The 28 Septembre radiotherapy will be started.

[Nini01]

Hi Nini
  This is very rare. Where are you being seen as a patient? How large are the tumors and have you been screened bodily for other tumors? Sam asked a good question also.
   Russ

Thanks to everybody.

[Nini01]

Have you had prior radiation for acoustic neuroma??

Thank you for your help
No radiation nor acoustic neuroma.

[Nini01]

How do they know it's malignant? Did they biopsy it? Intracranial malignant nerve sheath tumors are extremely rare indeed, and the frontal ethmoid is a very uncommon site for them in the sinuses. They are more common outside the skull in people with NF-1. Prognosis is dependent on whether they can remove it completely, age, etc. They generally do not respond to radiation to my understanding, but that info is based on the few cases there are. If it is truly a malignant schwannoma, you may want to contact the University of Texas M. D. Anderson Cancer Center. It's just a shot in the dark, but they have been testing some new things such as Delta-24-RGD, http://www.scienceblog.com/community/older/2003/B/20037132.html  If I had a malignant schwannoma, I would certainly look into all new options available. 

Have you had prior radiation for acoustic neuroma??

I think the location of Nini's tumor is miles away from any radiation exposure from radiosurgery for an AN to possibly be causitive. It's in the sinuses. Perhaps if she had whole brain radiation therapy a long time ago, but I doubt hardly anybody uses that anymore for benign tumors.

Thank you for your help. I have sent an email to M.D. Andersen Centre asking for help. We are in a total agony and Paula, is her name, doesn't know exactely how is the prognosis (sorry for my bad english but I'm Portuguese...)

[jamie]

Thank you for your help. I have sent an email to M.D. Andersen Centre asking for help. We are in a total agony and Paula, is her name, doesn't know exactely how is the prognosis (sorry for my bad english but I'm Portuguese...)

Your english is fine. I believe the prognosis depends on the grade of the malignancy (how fast it grows and spreads), whether it can be completely removed, the age of the patient and her ability to recover. Hopefully M.D. Anderson responds to you soon, I think they are the most advanced facility when it comes to treating cancer and developing new therapies. Currently, standard treatment for a malignant schwannoma seems to be complete surgical removal if it is of a lower grade, and surgical removal follwed by radiation and/or chemotherapy if it is of a higher grade. These tend to be aggressive tumors and metastatic (spreading to other body parts), but survival is definitely possible if treated promptly by experienced professionals. I really hope M.D. Anderson can help and wish you and Paula the best. Keep us posted. 

[Joy]

I was always told that schwannoma was benign.     The idea of it being malignant is scary. 

[jamie]

I was always told that schwannoma was benign.  :o   The idea of it being malignant is scary. 

Don't worry, you have a greater chance of being hit by lightning than the chance of a cranial nerve schwannoma being malignant. It does happen, but very very rarely, and in the few instances that it has, it's mostly involved the trigeminal nerve. I have been able to find no more than ten cases of intracranial malignant schwannomas published in all the medical literature I have searched. Malignant schwannomas are much more common in the lower extremities of people who have NF-1, the conditon the elephant man had. The malignant schwannoma mentioned in this post is rare as well, but it is in the sinuses, not the skull base.

[Nini01]

I was always told that schwannoma was benign.  :o   The idea of it being malignant is scary. 

Don't worry, you have a greater chance of being hit by lightning than the chance of a cranial nerve schwannoma being malignant. It does happen, but very very rarely, and in the few instances that it has, it's mostly involved the trigeminal nerve. I have been able to find no more than ten cases of intracranial malignant schwannomas published in all the medical literature I have searched. Malignant schwannomas are much more common in the lower extremities of people who have NF-1, the conditon the elephant man had. The malignant schwannoma mentioned in this post is rare as well, but it is in the sinuses, not the skull base.

Thanks to everybody. We have the biopsy confirmation from another country: is really a malignant schwannoma. The surgeon said that he has remove all the tumor. Now we wait... and we hope...

[Joy]

I am really sorry that it turned out to be malignant.     I truly hope that they are able to remove all of it and everything turns out okay.