HER2 Support Group Forums - View Single Post - WBR no longer necessary first step with Brain Mets

Esther · 01-15-2006, 10:15 PM

Last week, on Wed the the 4th of Jan. I realized that I had been having nausea for about 5 days, and that I was getting some slight headaches. I felt some waves of "I'm not feeling good" wash over me.

I got an immediate appt with my onc the next day Thursday the 5th. Within 2 hours I was having a brain MRI. Within 2 hours of that, it had been reviewed by the Tumor board at LLUMC, and my onc called me to let me know there was a 12mm tumor in my cerebellum.

None of the drs could believe that I had felt something wrong and been symptomatic with such a small tumor. I had no balance problems, had just been skiing the previous week-end testing out new skiis, and was rock solid on the slopes.

On Tuesday that 10th of Jan I had 1st opinion at LLUMC to discuss Proton. The Proton treatment requires 4 tiny metal plates be implanted under your skin on your skull. In most cases they leave then there permanently. There was heavy pressure to undergo WBR immediately, but that was already a decision I had made, not to do WBR now. So I really didn't appreciate the pressure.

On Thurs the 12th, I had a 2nd opinion at Scripps La Jolla to discuss Gamma Knife with Dr Hodegsen, who was rec. to me by Christine. Scripps La Jolla is a world class facility. We discussed WBR. He said that is no longer a first step recommended in every case, and certainly not in mine. Gamma Knife requires no implantation of anything.

I have a 3rd opinion appt scheduled for Wed. the 18th of Jan with Dr. Keith Black and Cedars-Sinai. Dr. Black is considered by many to be the top neuro-surgeon in the world, and pioneers alot of new techniques and procedures.

I will make a final decision on my treatment regimen after seeing Dr. Black on Wed. Dr. Hodgesen indicated that we could tentatively schedule the Gamma Knife procedure for the second week in Feb., as we already have a ski trip planned to Telluride, CO for Feb 3-11. That was a schedule he approved.

Dr. Hodgesen says he has an over 90% success rate with the Gamma Knife procedure, in that 90% of his patients do not need additional procedures to deal with brain mets. Also Gamma Knife can be performed multiple times if any addtional lesions should appear later on.

Everyone is shocked that I can ski, and feel no balance issues, and other than some nausea, now have no symptoms of brain mets at all. I am on Decadron to reduce the swelling around the lesion.

My first thought when I heard the news was Oh *&*&*, but now I'm in let's take care of this mode. I'll let you all know what Dr. Black has to add to the situation.

01-15-2006, 10:15 PM	#1
Esther Senior Member Join Date: Sep 2005 Location: Riverside, CA Posts: 484	WBR no longer necessary first step with Brain Mets Last week, on Wed the the 4th of Jan. I realized that I had been having nausea for about 5 days, and that I was getting some slight headaches. I felt some waves of "I'm not feeling good" wash over me. I got an immediate appt with my onc the next day Thursday the 5th. Within 2 hours I was having a brain MRI. Within 2 hours of that, it had been reviewed by the Tumor board at LLUMC, and my onc called me to let me know there was a 12mm tumor in my cerebellum. None of the drs could believe that I had felt something wrong and been symptomatic with such a small tumor. I had no balance problems, had just been skiing the previous week-end testing out new skiis, and was rock solid on the slopes. On Tuesday that 10th of Jan I had 1st opinion at LLUMC to discuss Proton. The Proton treatment requires 4 tiny metal plates be implanted under your skin on your skull. In most cases they leave then there permanently. There was heavy pressure to undergo WBR immediately, but that was already a decision I had made, not to do WBR now. So I really didn't appreciate the pressure. On Thurs the 12th, I had a 2nd opinion at Scripps La Jolla to discuss Gamma Knife with Dr Hodegsen, who was rec. to me by Christine. Scripps La Jolla is a world class facility. We discussed WBR. He said that is no longer a first step recommended in every case, and certainly not in mine. Gamma Knife requires no implantation of anything. I have a 3rd opinion appt scheduled for Wed. the 18th of Jan with Dr. Keith Black and Cedars-Sinai. Dr. Black is considered by many to be the top neuro-surgeon in the world, and pioneers alot of new techniques and procedures. I will make a final decision on my treatment regimen after seeing Dr. Black on Wed. Dr. Hodgesen indicated that we could tentatively schedule the Gamma Knife procedure for the second week in Feb., as we already have a ski trip planned to Telluride, CO for Feb 3-11. That was a schedule he approved. Dr. Hodgesen says he has an over 90% success rate with the Gamma Knife procedure, in that 90% of his patients do not need additional procedures to deal with brain mets. Also Gamma Knife can be performed multiple times if any addtional lesions should appear later on. Everyone is shocked that I can ski, and feel no balance issues, and other than some nausea, now have no symptoms of brain mets at all. I am on Decadron to reduce the swelling around the lesion. My first thought when I heard the news was Oh &&*, but now I'm in let's take care of this mode. I'll let you all know what Dr. Black has to add to the situation.