How often should MRI's be scheduled?

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How often should MRI's be scheduled?

by eileenkay on Thu May 14, 2009 12:00 AM

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Hi, My husband Brian was diagnosed with Anaplastic Astrocytoma on March 21st after a big seizure. Had no idea anything was going on with him like this before that. Doctors said that it is inoperable due to the "fingers" extending from the tumor itself (which isn't really that big), but that any kind of surgery to remove all of it would basically devastate him mentally. He is currently receiving Temodar and radiation now with no problems. My question to any of you experienced in dealing with this is: How often should MRI's be scheduled after this? I asked his radiation oncologist that and he said that 6 weeks after radiation is done he will receive an MRI. Then if all is well, maybe after another 4 months then after that only every 6 months. Basically he said only if he presents new symptoms will he get an MRI. Isn't that strange? I have no intention of waiting for him to present new symptoms before another MRI. I mean if we know that he has an active aggressive tumor why would we wait to see what's going on with it only every 6 months or whenever he has a new symptom??? What do all of you think?

RE: How often should MRI's be scheduled?

by Bruce_Edward on Thu May 14, 2009 12:00 AM

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Hi,

I disagree with your doctor! My 21 year old daughter was diag. with a GBM and due to the location was able to have surgery. She had the standard radiation/temodar. She is now on the 5 day/month temodar cycle. Her MRI's are every eight weeks. She originally had surgery Jan. 2, 2008 and continues on the 8 week MRI schedule. In answer to prayer, each and everyone has been clear! You have to be the advocate.

Sincerely,

Bruce

Heritage_Softail Heritage_Softai...
(Inactive)

RE: How often should MRI's be scheduled?

by Heritage_Softail on Thu May 14, 2009 12:00 AM

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As Bruce stated I disagree as well. I am on temodar 5/23. After each cycle I am in for an MRI so they can watch it closely. Seems they are putting the cart in front of the horse. God Bless

Damon

RE: How often should MRI's be scheduled?

by flfrog on Thu May 14, 2009 12:00 AM

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I disagree with that as well, my dad had MRI's about every 8 weeks until he finished the 6 month temodar regimen (5 / 23). then he went to every three months which I think was too long.  He had an MRI end of Aug which showed slight changes, MRI in Dec had significant changes and a PET scan was done to show changes were necrotic with one questionable area near original tumor sight, MRI in March showed 3 new tumors and MRI in April showed a fourth with further changes.  Around December we started noticing changes with my dad but they were all mental / memory related so it was all chalked up to side effects from treatment.  I know MRI's are expensive but I think waiting over 2 months is it too long because of how much my dad changed from March to April.  It again depends on the dr. as the time frames ranged from 2 months to 6 months until the next MRI depending on which dr. we saw which we always went with the dr. who would do the MRI the soonest which was the radiation oncologist.  We really miss him now that we had to switch to a different hospital but since dad is on a clinical trial he gets the MRI every 8 weeks are next one is on 5/28 so hopefully it will show the chemo is working.  The whole thing is SOOO frustrating and the dr's really do not communicate well on the illness but I think it is because they truly don't know what's going to happen as everyone's brain and tumor is differnt.

Blessings to your family!

RE: How often should MRI's be scheduled?

by Lorre_G on Thu May 14, 2009 12:00 AM

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I agree with the other respondees.  At my facility we do every 2 months for several months and then after good outcomes we go to 3 months and so on.   It takes quite a while for long term survivors to get to a schedule of only once a year.  Any recurrence, no matter how slight it might appear, will send them back to a 2 or 3 month schedule again. 

RE: How often should MRI's be scheduled?

by Cvillelarry on Thu May 14, 2009 12:00 AM

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I too have AA dx 7/2006.  I have had MRIs every three months since the post radiation scan. I'm surprised that the  oncology-radiologist is setting the schedule.My neuro-oncologist manages my care.

Yesterday's scan showed no change, btw.

 Larry

 

RE: How often should MRI's be scheduled?

by MargaretAnn on Thu May 14, 2009 12:00 AM

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My mother just completed radiation for GBM (dx 03/09), and has an MRI schuduled every four weeks! We are in Canada, so not sure if this makes a difference. These tumours are extremely agressive and we were told by our NO and RO that they can as much as double in size in the course of two weeks once they start. Six months or even four, is far too long for this type of cancer. I would seek a second opinion asap!

Best of luck to you and don't give up! Remember that sometimes you have to advocate quite strongly in order to get the treatment your loved one deserves.

RE: How often should MRI's be scheduled?

by Bella117 on Thu May 14, 2009 12:00 AM

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I also agree with all of the other posters! I would also hope you'd seek another opinion, If a Doctor is worth anything, they'll help you in finding another Doc to get an opinion from or depending if you live near a larger city, do the research yourself. PLEASE, never for one moment soley rely on that information alone.

Best of luck to you,

Colleen, father dx. GBM 12/08, surgery, radiation, temador and they now have the tumor currently under control!!! 

RE: How often should MRI's be scheduled?

by VA_Husband on Fri May 15, 2009 12:00 AM

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Hi:

 

The location of the tumor has much to do with the ability to operate; however I would at the very least get a separate opinion.  There is Gamma Knife proceedures that can be done as well as a new computer guided 3D technique for brain tumors that give the surgeons 100x' more detail and accurate use of the intruments.

 As far as MRI, you do need to wait about 4-6 weeks post radiation to get a clear picture as dead tumor and scar tissue can be misread. After that I think every month is standard for GBM. for Grade III,which is the diagnosis you mentioned perhaps 4 months is OK as this is slower growing than GBM (which is grade 4). My wife was dx'd with GBM in June-07 and has been cancer free since her last surgery in Oct-07. She takes Avastin every 2 weeks. She was getting MRI's every month for the first year, and then they went to every 3 month, and is now on every 4.

Hope this helps,

Chuck

RE: How often should MRI's be scheduled?

by Brandoncg on Fri May 15, 2009 12:00 AM

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I agree with everyone as well... MRI's should be much more frequent at this stage. Also I would echo what was said about getting a second opinion. Did they do a biopsy? If not, how can they accurately diagnose AA-III? If the tumor is showing visible fingers on a scan and there was no pathology, there diagnosis could be wrong. What one surgeon will not touch, another might believe the better treatment, with safe results. Not to mention, that if there was a biopsy, the results of the pathology are often subjective and a second opinion on those results is worth having. There are several major Brain Tumor clinics that you can self-refer to for second opinions on neuro surgery, pathology and oncology. Also, look into clinical trials now, there are some that can be offered to pre-op patients where they use tumor cells as a vaccine. There are a lot of what ifs... but I personally found that second opinions are worth the time taken, and your current doctors should not be put off by your wanting to do so.
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