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July 19, 2013 at 8:17 pm #21460buffcodyParticipant
I met with my oncologist on Tuesday to get the report on my latest brain MRI (July12) and see where the future is leading. No new brain tumor appearing. Radiated tumor remnant from December SRS is still growing (over 2 cm. now), and the oncologist would like to see it operated on and removed. The brain surgeon does not want to do this until he sees a PET brain MRI (didn’t know anything about those until later this week). In fact, he doesn’t want to even see me until I get one done. That is now scheduled for July 29. Anyone had one of those? I presume he will be able to determine more exactly whether it is cancerous (I thought it was definitively not.). Or what other purpose?
Next regular set of body PET and brain MRIs scheduled for mid-September with follow up appointment later in month. Damages so far: Stage IV found in June 2012, lower right lung lobectomy, ipi begun October 2012, two brain tumors found in October radiated in December, deep in left buttock met removed surgically May 1, seizures resulting from remnant of one of SRSed tumors May 11. On dexamethasone and Keppra. Feeling well.July 21, 2013 at 4:47 pm #61874Catherine PooleKeymaster
The PET may give them further information they are looking for to be sure of things. Here is an interesting link to how PET works: http://www.pbs.org/wnet/brain/scanning/pet.htmlJuly 21, 2013 at 5:16 pm #61875PatWParticipant I, too, would be interested learning more about brain PET-MRI scans because I suspect you may be helping to blaze new trails here.
As Catherine’s link says, PET scans detect areas of high metabolic activity. Since tumor cells are rapidly dividing, they are more metabolically active than most normal cells and they “light up” on PET scans in the torso and abdomen. However, since the brain is also very metabolically active, the background or baseline PET activity is high so brain tumors don’t show up too well compared to the rest of the brain. That is why PET scans are not used very often to look for brain tumors.
However, Dr. Veronoica Laing, who presented the MIF webinar “Radiation Treatment in Brain Metastases”, said that some of the new melanoma treatments (especially the immune-based treatments) are presenting some new and unusual patterns for radiation oncologists to interpret. When brain tumors get bigger, is the tumor growing or is the pattern due to activated T-cells surrounding and attacking the tumor? When a tumor has been irradiated but looks “funny” on an MRI, is that due to dead cells or bleeding tumors or an immune response or what?
I don’t know what a PET-MRI is, but perhaps it is an attempt to combine the two techniques so your radiation oncologist can try to more accurately interpret what’s going on with your tumors. Obviously, you would need to have that done before the surgeon gets in there and messes everything up (from a radiation oncologist’s point of view). Please do share with us what you learn about this technique as time goes on.July 22, 2013 at 9:48 am #61876odonoghue80Participant
Buffcody please keep us informed. I’m in very similar situation. Brains SRS December 12 and seizure in June. Just had results back one month post seizure and on one Dexamethosone and two Keppra per day also. Feeling great but lacking sleep. Doctors said everything at one month follow up was stable but retesting in September. PET brain MRI mentioned two if surgery needs to be an option. Location of my tumor left temporal makes surgery higher risk so I’m hoping its not needed. Currently also taking Zelboraf which has managed body tumors well thus far.
Again though please keep us in loop I’m curious how the doctors and you choose to play this out. You mentioned slow growth and that seemed at for brain met to me? Not sure though.
Thanks for sharing,
ShaneJuly 27, 2013 at 11:47 pm #61877buffcodyParticipant
One thing I found out late Friday afternoon. Medicare does not pay for brain PET scans for anything having to do with metastatic cancer. I’m told by U. of M staff that Medicare never has. So if I go through with the one ordered on Monday morning at 7:30, I will need to sign a waiver that makes me responsible for a $5000 bill. Unfortunately, late Friday afternoon is not the best time to find out about these hard to schedule tests supposedly essential to my well being. Or nearly essential??? No one has told me why I need to get one. Haven’t heard back from my oncological team. Why order the test on July 16 and hear about the insurance difficulties for the first time late on the 26th? Welcome to the world of melanoma/cancer centers/Medicare. 👿
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