Brain MRI
 

i have a question. i have had several PET scans...have one scheduled mid August. I get them every 6 months....but never any mention of brain MRI. i thought brain was checked on PET too duh...guess not. Do i need to ask oncologist about this or wait for him to bring it up? what happens that the doctor orders one of those tests. thanks! bonita

Re: Brain MRI
 

I have had brain mris but I have not had another pet scan? It is a regular mri w/contrast both were neg.(Thank God) Once when I lost half of my vision field and when my migraine med. stopped working and they started coming more frequently. My first pet scan was after my first surgery and nothing lit up. I would just ask if I were you. Gods blessings to you Bonita. (What a great name?)

Your friend,

Nancy

Re: Brain MRI
 

Hi Bonita. For the brain the best is a MRI. And there is no radiation. Don't hesitate to ask for one. Michka

Re: Brain MRI
 

I am pushing for brain MRIs due to two separate studies that showed if you have a met, 30% of the time it is in the brain. There is tremendous work to get the brain mets under control, and so it is not the dreaded finding it was a few years ago. PET does not identify Brain Mets! Please ask your doctor to run one if you had more than a couple of positive nodes or have had a met anywhere else.

Re: Brain MRI
 

I think you should definitely ask for one. I wish treatment for us would have included Tykerb for some protection of the brain, does anyone know why it isn't part of care for stage IIIc? I've been having headaches, probably sinus, but I may have it checked next month. I had a brain MRI last year before I participated in a vaccine trial. At the time I was also having similar headaches, but sinus headaches are something I have battled for years. It is always good to see your posts and I'm glad you're doing so well! Mel

Re: Brain MRI
 

Always ask for a brain MRI. And if doctor hms and haws, then demand one. Don't wait for the doc to decide you need one, it's often really late in the game. Be your own best advocate!

Re: Brain MRI
 

Mel, I was on tyverb for almost 2yrs and still got brain mets so it doesnt always work, pity!

Re: Brain MRI
 

I dont get any scans unless I report symptoms or pain and have never had a brain scan!

Re: Brain MRI
 

Tricia,

I firmly believe that you are entitled to your opinion. I think there is a good arguement for more frequent MRIs of the brain based on my wife's situation, but my bias is that this might not have lead to 30 months of tremendously expensive healthcare, emotional roller coaster, and seven months of separation from one another. If it had been found earlier, we could have had Gamma Knife treatment locally and likely be living a much better life. In your situation, nothing happened, as is the case 70% of the time. It might not be worth it in your case, but the outcome of my wife, Nina, might have been much better with a finding 12 months earlier.

If the MRI can let you hear the train far enough down the tracks, you can get out of the stalled car before the train kills you. We got lucky and are recovering from the train hitting the car while Nina was close. Now we are paying the penalty.

Re: Brain MRI
 

I have NEVER had symptoms or pain. Never. Brain MRIs have helped me diagnose them early and more treatable. I have had more choices re: treatments. Just one girls opinion.

Re: Brain MRI
 

Tricia lives in Ireland, where they may not be as willing to scan without symptoms.

Which is too bad, because there must be no small number of BC patients who have the brain mets and catch them on the late side as RP suggested.

Oncologists are learning that the HER2 treatments are allowing us to live longer and therefore more brain mets are discovered. Thus the brain is becoming MORE important to survey on a regular basis. Used to be around 10% of distant mets first site was brain, now the number is higher - just not sure if there is a good determination of that new number.

NO SYMPTOMS with me either.

Re: Brain MRI
 

Thanks Steph, and RolePaul I was'nt giving an opinion but simply stating a fact, I too think regular scans are worthwhile whether on the body or brain. Steph is correct in that while I had what many Americans have called Gold Standard treatment my Onc does'nt call for scans as routine. I'm so sorry in Nina's case an early MRI may have led to less aggressive treatment and fully agree with your point and hope she has a full recovery.

Steph my Onc is a young woman in her 30's who has trained and worked in the states for a number of years and always open to new idea's and comments from me and I do intend asking her about this issue when I next see her.:)

Re: Brain MRI
 

Current stats from Dana Farber and a couple of other studies say 30%. That is pretty good reason for gong forward with brain mets every two years initially. It seems pretty clear that if you get to 6-8 years disease free, you have dodged the brain mets garbage. That is 70% of the time. Pretty good odds, but you have to get treatment early if you can. I hate this fact, but I had to deal with it personally. two and half years later, we appear to have hit the correct mix. Time to spread the word.

Re: Brain MRI
 

Thank you for that info Rolepaul, would you or Steph or anyone else know of any links etc I can show my Onc to support my request/arguement for regular brain scans???? If not I'll take a look myself and will bring this up with her, also does anyone know if this was addressed at ASCO for us early stagers who had herceptin, sorry if its been posted but I missed lots while hubby was ill earlier in the year!

Rolepaul thanks for bringing this up and my best wishes to you both!

Re: Brain MRI
 

I think Dr. Eric Wiener from Dana Farber authored that paper. Try a google search and see. Nobody denies it. I found it out in November 2009. I almost did a very stupid thing when Nina's oncologist told her how sorry he was when the @#$@#@#$%@# would not agree to the brain MRI at four years after surgery like I wanted. That is why I push for women like you with three hot nodes.

Re: Brain MRI
 

Thanks again and I'll be sure to bring it up!

Re: Brain MRI
 

Yes, Rolepaul is right. Good luck Trisha. Eric Winer is a Gold Standard Onc when it comes to brain mets. Possibly also you'll find something from Dr. Neil Love in Florida and Reseach to Practice. He MCs a panel at San Antonio that I go to every year with different oncs sitting on it. He's an awesome resource for Oncs, too. http://www.researchtopractice.com/Podcast

Re: Brain MRI
 

Nina is seeing Dr. Amal Melhem-Bertrandt at Breast Center, MD Anderson. Dr. Brusky at Pitt would be another source. Dr. Razier at Northwestern has a clinical trial going and has the stats. Those are the ones I know. BrainMetsBC.org has some info. There was a number mentioned in the woman in Germany in 2006 who was one of the first to get high dose IT Herceptin and lead the way. How about the study at Johns Hopkins? The San Antonio symposium papers might have it. Start to go through these and the list is overwhelming. And the ration gets higher as the first large group treated with Herceptin initially are now 4-8 years post surgery. I will make as much noise as I can. I seem to now be getting some response from doctors and maybe others. I am a pretty determined ant.

Re: Brain MRI
 

I agree we need to be our own best advocates Rolepaul and keep that determination going and thanks again.

Brenda my thanks to you too and I'm going to print out what I find and show my Onc in Sept, I could of course too do as you suggested and complain of headaches and dizzyness!:)