Metastasis To Brain..Need Encouragement On Prognosis

I found this site in Oct & have been uplifted by the care & concern of all the people who are out there experiencing the same thing.  

When I've read your messages of 5yr, 8yr, and even 10 yr.survival rate with rcc, I have been encouraged beyond words. The last 2 days, though, I have been researching "metastasis to the brain" & it appears that patients that have a met to the brain have 18 mon to 2 yr survival rate. I was diagnosed July 2, 07 with left RCC with 1 metastasis to brain and 2 small mets in left lung. Of course, I should have researched this sooner but, to say the least, I am extremely upset & discouraged by these findings. Seems I should have been more concerned about the brain met than the rrc!!

If there is anyone out there who has a met to the brain or has a loved one with this diagnosis, please let me know. As I said, I really need some encouragement. It seems that I am falling apart emotionally at this time.

God Bless

Barbara from Texas 

Ah Yes, brain involvement. My RCC was diagnosed in February 07 and the brain tumor was not found until I went to MD Anderson in Houston about the last day in Feb. I was immediately sent to a brain cancer specialist and the decision was made to use radiation on the tumor. It was not especially pleasant but I had it done early in the morning until mid afternoon most of the time spent by the guys working out the physics of the treatment. Anyway I had 4 beams shot into the brain from different angles but all focusing on the tumor. The Dr. says it was a perfect shot and since then I have only had shrinking of the tumor and no new ones. The brain specialist says the tumor is dead. I hope you can be as fortunate as I.

You are in our prayers.,

You are one of the lucky ones!!  Believe it or not, we are going to the same cancer center. I'm going the 16th of this month & will have another battery of tests done. By the way, have they already removed your Kidney?

I'm on Nexavar now and they plan to do a nepherectomy only after I,ve been on it for a year or more. I'm going to ask if they can't do another radiation treatment on the brain tumor since the first did not take care of it. Your letter did give me some encouragement. Sounds as if we both had the same Steriotactic Radio Surgery. (You wear the halo and they shoot from 4 different angles.) My tumor was 1.5 cm. Was yours larger or smaller?

You are in my prayers also.

Barbara from Texas

My husband was dx with rcc in Feb 06 and with 2 brain mets June 06.  He had gamma knife in June 06.  He has had a lot of complications and side effects to the gamma knife and the tumors.  They found another tumor in July 07 and he underwent gamma knife again.   There have been many bumps in the road and they found 2 mets to the lung in Sept 07.  No one has said anything to us about how much time.  We just keep fighting it with everything we have.  He had a ct scan on Jan 3 and they discovered that the tumors in the lung have grown.  He has been on Sutent 37.5 mg.  Am sure they will change the medication when we go back on the 16th. 

We are certainly not ready to throw in the towel yet.  It is important no matter how bad things look to live your live everyday.  Who knows something might happen to me before him.   This is a scary nasty disease and it is important to not let it get you down. 

Wish you all the luck in the world.

Ginny 

hi,

my mom has 2 small brain mets.  Those were found in Sept 06 - the docs prognosis was very grim but here we, and she's still doing well.

After 3 cycles of sutent, the brain mets shrank considerably.  She will be starting again soon after a very long break.

the mets had caused paralysis at the time of diagnosis on her left side, and even though feeling came back, she is still bed ridden but in fantastic spirits.  Today, she went into a wheel chair for the first time and rode herself around.

so, i dunno, sutent is a MIRACLE drug for sure.  I mean, she's been off of it over 6 months now because our country doesn't have it registered.  We JUST got in a couple more bottles so she'll most likely start back monday and then we'll do another scan to see.

Dally k

Hello, my husband was dx with RCC in 12-05 with metastasis to the brain. He has had 3 brain surgeries, a spot removed off of lung and a kidney removed. He had another spot show up on his lung 3 months ago. He was put on Sutent and is now on his 3rd cycle. He had scans a week ago and tumor has not grown nor has he developed any new tumors.We consider this a very good report. He has had a few side effects from Sutent. The fatigue has been the worst.

NEVER GIVE UP!

Barbara,

   My husband has had 2 mets in the brain following mets to both upper lungs.  He was diagnosed with RCC in 03 having no mets until 06.  One brain met was in the upper left lobe of the brain which was removed successfully.  We did not find this until he was in the hospital having one of the lung lobes removed!  He had sudden loss of movement, slurred speech,,,following the lung surgery and that is how it was discovered.  Another met was found in the brain stem, which was inoperable, BUT treated with gamma knife radiation and it is shrinking.  The brain has been successful.  So you have lots of hope.  Since the brain, he has had other mets in bone, right adrenal gland, etc.  I think that as a caregiver, I am learning that there are no easy answers and I am learning to live one day at a time.  Keep up the Hope and stay encouraged.  New drugs are around the pike.  Roxane in Arkansas