New MRI Thoughts Advice

Apologies, I'm jumping in a little late here.  My brain met story is a little different than yours Matt.  I had a single met that was aready 2.5-cm when it presented (large enough it showed up on PET the week before I was scheduled for my then annual brain MRI).  I was asymptomatic, or thought I was, but in hindsight had been having some left side gait issues and a couple of focal siezures in my left arm in the six weeks or so prior.  

Given the size being towards the upper limit of where they might use SRS (CyberKnife, Gamma Knife, etc.), location, and the fact that it was a single met, the doctors recommended and we agreed to have it removed surgically and then probably follow it with some mode of radiation, either SRS to the tumor bed margin or whole brain.  They felt it was accessible and they could do a complete resection, and that although I might require some physical therapy afterwards, that it would be minimal — turns out I didn't need any.

The surgery went as well as it could have, the tumor was found on scan on a Thursday, I was admitted immediately to do a full assessment, back home on Saturday, readmitted on Monday night for surgery Tuesday, Tuesday night in the ICU as standard procedure, back home on Thursday.  We consulted with my radation oncologists and they explained the pros and cons of SRS and whole brain radiation.  They left the decision to us, but clearly they felt, and again we agreed that SRS was the best approach for my situation.  It turned out to be a single session of CyberKnife (my cancer center uses CyberKnife — they use the same machine for SBRT to other parts of the body, but I think GammaKnife is a fine option, too).  The actual CyberKnife session was about a month after the surgery itself, giving time from any remaining edema from the surgery to resolve.  There were no side effects or immediate complications from the radiation.

After that, my medical oncologist and I considered a handful of options, but ultimately decided to try Yervoy, even though I had relatively low tumor burden and we believed that the brain met had been eradicated.  So it was early February for the craniotomy, early March for the CyberKnife SRS, and the April through June for my four doses of Yervoy, which I also tolerated well — some rash and fatigue, both nothing too severe.  I've been on a three month brain MRI schedule ever since (actually every two months for the first six months post-op, then every three since).

I have had some recent complications from radiation necrosis, which can occur in 10-15% of people who receive radiation to the brain and with a delayed onset of 6-24 months following treatment.  It was causing new issues with motor control in my leg.  But, with steroids, the necrosis appears to be resolving (there was concern it could be new tumor growth and a scan can't tell the difference) and I'm tapering off the steroids, thankfully, because they're worse than the tumor symptoms.  We're doing more frequent brain MRI's until it fully resolves, every 6-8 weeks, but I imagine we'll be back to every three months once the swelling is gone.

I hadn't seen the MIF video that Brian shared above but watched it yesterday, it's excellent.  So rather than go into too much detail, I'll leave that to the expert to explain in the video.  Much of what I experienced and was told, including the decision points around SRS vs. whole brain, the number and size of mets, etc., is what the presenter explains in the video.  At Yale, it appears that prefer Gamma Knife, which again, I think is fine — I'm not hung up on either but understand how someone could have a preference.  One thing I was told about WBR that made the decision easier for me was that a round of WBR was the equivalent of aging the brain by 10 years, and that while many patients may tolerate it well in the short term, the risk for longer term cognitive impairment, including early-onset dementia was increased, that sealed it for me.  If I'd had multiple mets, the decision may have been different, but at least at this point, I think SRS was/is the right thing for me.  Thankfully, I think the numbers of brain mets that can be treated with SRS are going up, where I think they used to say perhaps 3, now I think they'll consider 5 or 6 at a time for treatment with Gamma Knife, maybe less with CyberKnife.

I've posted elsewhere here about my brain met and the radiation necrosis issue, just look at some of those posts.  I highly recommend the video Brian shared, I found it very useful, too!  I imagine the discussions with your radiation oncologist will start with SRS vs. WBR and the pros and cons.  Given six mets, it might seem to be at the upper end of where they'd want to use SRS, but perhaps they'll focus on SRS for the larger ones and then see how the smaller ones respond to Yervoy, all without having to play the WBR card.  WBR could be something you hold in reserve for now.

Glad to answer any questions that come up, let us know how it goes with your radiation oncologist.

Wishing you the best,
Joe

Apologies, I'm jumping in a little late here.  My brain met story is a little different than yours Matt.  I had a single met that was aready 2.5-cm when it presented (large enough it showed up on PET the week before I was scheduled for my then annual brain MRI).  I was asymptomatic, or thought I was, but in hindsight had been having some left side gait issues and a couple of focal siezures in my left arm in the six weeks or so prior.  

Given the size being towards the upper limit of where they might use SRS (CyberKnife, Gamma Knife, etc.), location, and the fact that it was a single met, the doctors recommended and we agreed to have it removed surgically and then probably follow it with some mode of radiation, either SRS to the tumor bed margin or whole brain.  They felt it was accessible and they could do a complete resection, and that although I might require some physical therapy afterwards, that it would be minimal — turns out I didn't need any.

The surgery went as well as it could have, the tumor was found on scan on a Thursday, I was admitted immediately to do a full assessment, back home on Saturday, readmitted on Monday night for surgery Tuesday, Tuesday night in the ICU as standard procedure, back home on Thursday.  We consulted with my radation oncologists and they explained the pros and cons of SRS and whole brain radiation.  They left the decision to us, but clearly they felt, and again we agreed that SRS was the best approach for my situation.  It turned out to be a single session of CyberKnife (my cancer center uses CyberKnife — they use the same machine for SBRT to other parts of the body, but I think GammaKnife is a fine option, too).  The actual CyberKnife session was about a month after the surgery itself, giving time from any remaining edema from the surgery to resolve.  There were no side effects or immediate complications from the radiation.

After that, my medical oncologist and I considered a handful of options, but ultimately decided to try Yervoy, even though I had relatively low tumor burden and we believed that the brain met had been eradicated.  So it was early February for the craniotomy, early March for the CyberKnife SRS, and the April through June for my four doses of Yervoy, which I also tolerated well — some rash and fatigue, both nothing too severe.  I've been on a three month brain MRI schedule ever since (actually every two months for the first six months post-op, then every three since).

I have had some recent complications from radiation necrosis, which can occur in 10-15% of people who receive radiation to the brain and with a delayed onset of 6-24 months following treatment.  It was causing new issues with motor control in my leg.  But, with steroids, the necrosis appears to be resolving (there was concern it could be new tumor growth and a scan can't tell the difference) and I'm tapering off the steroids, thankfully, because they're worse than the tumor symptoms.  We're doing more frequent brain MRI's until it fully resolves, every 6-8 weeks, but I imagine we'll be back to every three months once the swelling is gone.

I hadn't seen the MIF video that Brian shared above but watched it yesterday, it's excellent.  So rather than go into too much detail, I'll leave that to the expert to explain in the video.  Much of what I experienced and was told, including the decision points around SRS vs. whole brain, the number and size of mets, etc., is what the presenter explains in the video.  At Yale, it appears that prefer Gamma Knife, which again, I think is fine — I'm not hung up on either but understand how someone could have a preference.  One thing I was told about WBR that made the decision easier for me was that a round of WBR was the equivalent of aging the brain by 10 years, and that while many patients may tolerate it well in the short term, the risk for longer term cognitive impairment, including early-onset dementia was increased, that sealed it for me.  If I'd had multiple mets, the decision may have been different, but at least at this point, I think SRS was/is the right thing for me.  Thankfully, I think the numbers of brain mets that can be treated with SRS are going up, where I think they used to say perhaps 3, now I think they'll consider 5 or 6 at a time for treatment with Gamma Knife, maybe less with CyberKnife.

I've posted elsewhere here about my brain met and the radiation necrosis issue, just look at some of those posts.  I highly recommend the video Brian shared, I found it very useful, too!  I imagine the discussions with your radiation oncologist will start with SRS vs. WBR and the pros and cons.  Given six mets, it might seem to be at the upper end of where they'd want to use SRS, but perhaps they'll focus on SRS for the larger ones and then see how the smaller ones respond to Yervoy, all without having to play the WBR card.  WBR could be something you hold in reserve for now.

Glad to answer any questions that come up, let us know how it goes with your radiation oncologist.

Wishing you the best,
Joe

Apologies, I'm jumping in a little late here.  My brain met story is a little different than yours Matt.  I had a single met that was aready 2.5-cm when it presented (large enough it showed up on PET the week before I was scheduled for my then annual brain MRI).  I was asymptomatic, or thought I was, but in hindsight had been having some left side gait issues and a couple of focal siezures in my left arm in the six weeks or so prior.  

Given the size being towards the upper limit of where they might use SRS (CyberKnife, Gamma Knife, etc.), location, and the fact that it was a single met, the doctors recommended and we agreed to have it removed surgically and then probably follow it with some mode of radiation, either SRS to the tumor bed margin or whole brain.  They felt it was accessible and they could do a complete resection, and that although I might require some physical therapy afterwards, that it would be minimal — turns out I didn't need any.

The surgery went as well as it could have, the tumor was found on scan on a Thursday, I was admitted immediately to do a full assessment, back home on Saturday, readmitted on Monday night for surgery Tuesday, Tuesday night in the ICU as standard procedure, back home on Thursday.  We consulted with my radation oncologists and they explained the pros and cons of SRS and whole brain radiation.  They left the decision to us, but clearly they felt, and again we agreed that SRS was the best approach for my situation.  It turned out to be a single session of CyberKnife (my cancer center uses CyberKnife — they use the same machine for SBRT to other parts of the body, but I think GammaKnife is a fine option, too).  The actual CyberKnife session was about a month after the surgery itself, giving time from any remaining edema from the surgery to resolve.  There were no side effects or immediate complications from the radiation.

After that, my medical oncologist and I considered a handful of options, but ultimately decided to try Yervoy, even though I had relatively low tumor burden and we believed that the brain met had been eradicated.  So it was early February for the craniotomy, early March for the CyberKnife SRS, and the April through June for my four doses of Yervoy, which I also tolerated well — some rash and fatigue, both nothing too severe.  I've been on a three month brain MRI schedule ever since (actually every two months for the first six months post-op, then every three since).

I have had some recent complications from radiation necrosis, which can occur in 10-15% of people who receive radiation to the brain and with a delayed onset of 6-24 months following treatment.  It was causing new issues with motor control in my leg.  But, with steroids, the necrosis appears to be resolving (there was concern it could be new tumor growth and a scan can't tell the difference) and I'm tapering off the steroids, thankfully, because they're worse than the tumor symptoms.  We're doing more frequent brain MRI's until it fully resolves, every 6-8 weeks, but I imagine we'll be back to every three months once the swelling is gone.

I hadn't seen the MIF video that Brian shared above but watched it yesterday, it's excellent.  So rather than go into too much detail, I'll leave that to the expert to explain in the video.  Much of what I experienced and was told, including the decision points around SRS vs. whole brain, the number and size of mets, etc., is what the presenter explains in the video.  At Yale, it appears that prefer Gamma Knife, which again, I think is fine — I'm not hung up on either but understand how someone could have a preference.  One thing I was told about WBR that made the decision easier for me was that a round of WBR was the equivalent of aging the brain by 10 years, and that while many patients may tolerate it well in the short term, the risk for longer term cognitive impairment, including early-onset dementia was increased, that sealed it for me.  If I'd had multiple mets, the decision may have been different, but at least at this point, I think SRS was/is the right thing for me.  Thankfully, I think the numbers of brain mets that can be treated with SRS are going up, where I think they used to say perhaps 3, now I think they'll consider 5 or 6 at a time for treatment with Gamma Knife, maybe less with CyberKnife.

I've posted elsewhere here about my brain met and the radiation necrosis issue, just look at some of those posts.  I highly recommend the video Brian shared, I found it very useful, too!  I imagine the discussions with your radiation oncologist will start with SRS vs. WBR and the pros and cons.  Given six mets, it might seem to be at the upper end of where they'd want to use SRS, but perhaps they'll focus on SRS for the larger ones and then see how the smaller ones respond to Yervoy, all without having to play the WBR card.  WBR could be something you hold in reserve for now.

Glad to answer any questions that come up, let us know how it goes with your radiation oncologist.

Wishing you the best,
Joe

With CyberKnife which I had first, it did use the plastic mesh face mask approach. I didn't like that I could still move my head a little bit, with swallowing, or simple inabilty to be a complete statue. 

With Gamma Knife which I had second, is used the metal frame halo mask. It attached with 4 bolts; the surgeon tightened each bolt with a torque wrench to get it exactly as tight as medically optimal. Honestly it wasn't that bad, and I didn't take the offered calming med either. Small price to pay, I thought. And they did the pre-procedure scan with the frame in place as a reference for the where the beams would be shotting later.

I very much liked the idea with the metal frame, that I couldn't move my head even 1mm — it seemed to me every mm counts. And that the beam paths were calculated with the frame already in place. I wanted the radiation going a) not to the wrong place, and b) to the right place. With the metal frame, that sense of lack of making any motion at all, made the whole procedure more relaxing for me — I didn't worry about whether I had just moved my head slightly or not. 

With CyberKnife which I had first, it did use the plastic mesh face mask approach. I didn't like that I could still move my head a little bit, with swallowing, or simple inabilty to be a complete statue. 

With Gamma Knife which I had second, is used the metal frame halo mask. It attached with 4 bolts; the surgeon tightened each bolt with a torque wrench to get it exactly as tight as medically optimal. Honestly it wasn't that bad, and I didn't take the offered calming med either. Small price to pay, I thought. And they did the pre-procedure scan with the frame in place as a reference for the where the beams would be shotting later.

I very much liked the idea with the metal frame, that I couldn't move my head even 1mm — it seemed to me every mm counts. And that the beam paths were calculated with the frame already in place. I wanted the radiation going a) not to the wrong place, and b) to the right place. With the metal frame, that sense of lack of making any motion at all, made the whole procedure more relaxing for me — I didn't worry about whether I had just moved my head slightly or not. 

With CyberKnife which I had first, it did use the plastic mesh face mask approach. I didn't like that I could still move my head a little bit, with swallowing, or simple inabilty to be a complete statue. 

With Gamma Knife which I had second, is used the metal frame halo mask. It attached with 4 bolts; the surgeon tightened each bolt with a torque wrench to get it exactly as tight as medically optimal. Honestly it wasn't that bad, and I didn't take the offered calming med either. Small price to pay, I thought. And they did the pre-procedure scan with the frame in place as a reference for the where the beams would be shotting later.

I very much liked the idea with the metal frame, that I couldn't move my head even 1mm — it seemed to me every mm counts. And that the beam paths were calculated with the frame already in place. I wanted the radiation going a) not to the wrong place, and b) to the right place. With the metal frame, that sense of lack of making any motion at all, made the whole procedure more relaxing for me — I didn't worry about whether I had just moved my head slightly or not.