› Forums › General Melanoma Community › Surgery to skull or radiation – any thoughts?
- This topic has 27 replies, 5 voices, and was last updated 11 years, 5 months ago by
arthurjedi007.
- Post
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- August 29, 2014 at 4:59 pm
I'm trying to decide whether I should have surgery or radiation or maybe both. Any thoughts would be appreciated.
I have 3 tumors in my skull or calvarium as the report says. The largest is growing and pressing on the outer layer of my brain and displacing it. It is 3.65 cm x 2.3 cm x 2.8 cm if I read this report right. There is also a lump on my head there that went down a lot with the PD1 then increased at the time of the MRI and is now slowly going back down some. It is in the posterior parietal bone to the right of the midline.
The 2nd tumor is 3 cm but is less expansile than it was in Feb. It is in the left frontal bone along the high convexity.
The 3rd is somewhat less expansile than it was in Feb but does appear to involve the underlying dura. It is in the high left parietal. Doesn't say its size.
So the Drs were talking radiation for the 1st one but now maybe surgery instead. With pd1 for the other 2.
I also have a couple dozen other tumors but these are the only ones in my head that I know of. They will be doing radiation again to my spine soon except this is further down where they haven't done before (t12 and l2).
If they do surgery I was wondering what that would be like? What would this plate they mentioned be like? How long would it take to recover from the surgery? Would it be done between the 3 week PD1 cycle or would I miss some PD1? What am I not asking that I should be cause I just don't know what to ask?
Thanks for any thoughts on this.
Artie
- Replies
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- August 30, 2014 at 3:13 pm
Hi Arthur,
Every patient is different but I will share my experiences as I have had both the radiation and surgical procedures done on my brain. In my case I had 1 shot SRS done along with Yervoy the first time around after scans found a tumor on the surface of the right temporal lobe. I had a recurrence in the same spot 1 1/2 years later which was surgically removed (path said tumor was 90% dead from earlier treatment) and then followed up with a 5 day SRS regimen targeting the tumor bed. I was shocked at how quickly I was released from the hospital. I looked funky with the staples but was feeling well enough to go home in just a couple of days. Be careful with post op anti swelling steroids as they lower your immune system. I had a 2 yr old nephew over and his cold sent me to the emergency room and a re admittance for a few days to control the fever. Given temporal lobe location my driving, depth perception, balance and quantative abilities suffered but have now improved to varying degrees.
Most recently in June a tumor was located inside the skull but on or outside the brain dura (like a sack around the brain) and although the surgeon said location was easily accessible the Oncologist went with SRS again. Last scan showed shrinkage so they are calling it dead for now.
From reading your post it looked like you had a combination of tumors in the brain and on the dura. I am definitely not downplaying any of the brain tumor procedures impact and recovery but from my experience they can be worked through with a lot less devastation than I was expecting. Fingers crossed and lots of praying helped too. I think I recall from your earlier posts that you were not a Yervoy responder but good luck with the Anti Pd-1 treatment as that looks really promising.
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- August 30, 2014 at 4:36 pm
Thank you for replying. Yeah I have 2 pressing on the dura and a third one that is still just in the skull bone. I also read your story. Thanks for sharing.
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- August 30, 2014 at 4:36 pm
Thank you for replying. Yeah I have 2 pressing on the dura and a third one that is still just in the skull bone. I also read your story. Thanks for sharing.
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- August 30, 2014 at 4:36 pm
Thank you for replying. Yeah I have 2 pressing on the dura and a third one that is still just in the skull bone. I also read your story. Thanks for sharing.
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- August 30, 2014 at 3:13 pm
Hi Arthur,
Every patient is different but I will share my experiences as I have had both the radiation and surgical procedures done on my brain. In my case I had 1 shot SRS done along with Yervoy the first time around after scans found a tumor on the surface of the right temporal lobe. I had a recurrence in the same spot 1 1/2 years later which was surgically removed (path said tumor was 90% dead from earlier treatment) and then followed up with a 5 day SRS regimen targeting the tumor bed. I was shocked at how quickly I was released from the hospital. I looked funky with the staples but was feeling well enough to go home in just a couple of days. Be careful with post op anti swelling steroids as they lower your immune system. I had a 2 yr old nephew over and his cold sent me to the emergency room and a re admittance for a few days to control the fever. Given temporal lobe location my driving, depth perception, balance and quantative abilities suffered but have now improved to varying degrees.
Most recently in June a tumor was located inside the skull but on or outside the brain dura (like a sack around the brain) and although the surgeon said location was easily accessible the Oncologist went with SRS again. Last scan showed shrinkage so they are calling it dead for now.
From reading your post it looked like you had a combination of tumors in the brain and on the dura. I am definitely not downplaying any of the brain tumor procedures impact and recovery but from my experience they can be worked through with a lot less devastation than I was expecting. Fingers crossed and lots of praying helped too. I think I recall from your earlier posts that you were not a Yervoy responder but good luck with the Anti Pd-1 treatment as that looks really promising.
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- August 30, 2014 at 3:13 pm
Hi Arthur,
Every patient is different but I will share my experiences as I have had both the radiation and surgical procedures done on my brain. In my case I had 1 shot SRS done along with Yervoy the first time around after scans found a tumor on the surface of the right temporal lobe. I had a recurrence in the same spot 1 1/2 years later which was surgically removed (path said tumor was 90% dead from earlier treatment) and then followed up with a 5 day SRS regimen targeting the tumor bed. I was shocked at how quickly I was released from the hospital. I looked funky with the staples but was feeling well enough to go home in just a couple of days. Be careful with post op anti swelling steroids as they lower your immune system. I had a 2 yr old nephew over and his cold sent me to the emergency room and a re admittance for a few days to control the fever. Given temporal lobe location my driving, depth perception, balance and quantative abilities suffered but have now improved to varying degrees.
Most recently in June a tumor was located inside the skull but on or outside the brain dura (like a sack around the brain) and although the surgeon said location was easily accessible the Oncologist went with SRS again. Last scan showed shrinkage so they are calling it dead for now.
From reading your post it looked like you had a combination of tumors in the brain and on the dura. I am definitely not downplaying any of the brain tumor procedures impact and recovery but from my experience they can be worked through with a lot less devastation than I was expecting. Fingers crossed and lots of praying helped too. I think I recall from your earlier posts that you were not a Yervoy responder but good luck with the Anti Pd-1 treatment as that looks really promising.
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- August 30, 2014 at 6:06 pm
Hey Artie,
I really don't know which treatment would be best for you. Kyle Z has been through lots of this stuff and could shed some light….at least on what to expect for some of it. Hopefully, he will give you some info soon! The only thing I would be sure to speak with the docs about is the fact that we have learned that immunotherapies like ipi and anti-PD1 can cause some initial inflammation around tumors that shows up as increased size on scans, that then shrinks over time….sometimes taking the tumor with it into nothingness!!!!! I'm not big on "watch and wait"….but it would be something I would talk to my docs about. Which-ever and whatever you decide….I wish you my best!!! Celeste
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- August 30, 2014 at 6:06 pm
Hey Artie,
I really don't know which treatment would be best for you. Kyle Z has been through lots of this stuff and could shed some light….at least on what to expect for some of it. Hopefully, he will give you some info soon! The only thing I would be sure to speak with the docs about is the fact that we have learned that immunotherapies like ipi and anti-PD1 can cause some initial inflammation around tumors that shows up as increased size on scans, that then shrinks over time….sometimes taking the tumor with it into nothingness!!!!! I'm not big on "watch and wait"….but it would be something I would talk to my docs about. Which-ever and whatever you decide….I wish you my best!!! Celeste
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- August 31, 2014 at 3:54 pm
Ok. Thanks Celeste. That might be why my mayo doc originally only wanted this 1 in my head taken care of rather than all 5 that the pet showed grew. I guess he figured the pd1 could take care of the rest but he's concerned it may not get this one in my head in time. After the mri he for sure wants the 1 in my head done and agrees with the radiation doc we should also do the 2 in my spine. The more I read I'm starting to lean more towards radiation rather than surgery mainly because I don't want to miss any pd1 or have to take steroids for inflammation that could hinder the pd1. I'll see my mayo doc on the 3rd and see what he says.
Artie
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- August 31, 2014 at 3:54 pm
Ok. Thanks Celeste. That might be why my mayo doc originally only wanted this 1 in my head taken care of rather than all 5 that the pet showed grew. I guess he figured the pd1 could take care of the rest but he's concerned it may not get this one in my head in time. After the mri he for sure wants the 1 in my head done and agrees with the radiation doc we should also do the 2 in my spine. The more I read I'm starting to lean more towards radiation rather than surgery mainly because I don't want to miss any pd1 or have to take steroids for inflammation that could hinder the pd1. I'll see my mayo doc on the 3rd and see what he says.
Artie
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- August 31, 2014 at 3:54 pm
Ok. Thanks Celeste. That might be why my mayo doc originally only wanted this 1 in my head taken care of rather than all 5 that the pet showed grew. I guess he figured the pd1 could take care of the rest but he's concerned it may not get this one in my head in time. After the mri he for sure wants the 1 in my head done and agrees with the radiation doc we should also do the 2 in my spine. The more I read I'm starting to lean more towards radiation rather than surgery mainly because I don't want to miss any pd1 or have to take steroids for inflammation that could hinder the pd1. I'll see my mayo doc on the 3rd and see what he says.
Artie
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- August 30, 2014 at 6:06 pm
Hey Artie,
I really don't know which treatment would be best for you. Kyle Z has been through lots of this stuff and could shed some light….at least on what to expect for some of it. Hopefully, he will give you some info soon! The only thing I would be sure to speak with the docs about is the fact that we have learned that immunotherapies like ipi and anti-PD1 can cause some initial inflammation around tumors that shows up as increased size on scans, that then shrinks over time….sometimes taking the tumor with it into nothingness!!!!! I'm not big on "watch and wait"….but it would be something I would talk to my docs about. Which-ever and whatever you decide….I wish you my best!!! Celeste
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- August 31, 2014 at 5:33 am
Artie,
A total of 3 (circular?) holes were cut into my skull so brain tumors could be removed. But in my case the sections of bone were all put back in place. In your case for the largest one, would a plate be taking the place of removed skull bone? I'm not sure what kind of questions would be useful to ask. Have the docs discussed whether there are any long-terms issues to consider with a plate where bone once was? Also, for that matter, are there any long-term issues with that much radiation going to those specific locations?For each neurosurgeries I was told there was about a 5% chance of complications. But I was also told that surgery was the way to go for those particular tumors. And I did liked having the three of them sliced/scoped out, taken off to the curb, and hauled away like trash. To a tissue bank no doubt. Also, the margins of the resection "holes" got radiation a couple of weeks later (so for me that was the "both" — both surgery and radiation).One factor with radiation might (or might not) be the total volume of tumor that they can irradiate. That might be something else to ask about, whether it's a factor in their choice to recommend surgery for the biggest one. I've heard there's a limit. For my part I had two additional smaller brain tumors (.3 and .6 cm) treated with radiation only. There were probably a number of reasons they chose not to resect, including size and location (one was very deep).How do you feel about second opinions? At a treatment juncture at least, I think they're very useful in the case that the 2 docs agree, at least as much as when they disagree!Good luck with your choices. – Kyle -
- August 31, 2014 at 5:33 am
Artie,
A total of 3 (circular?) holes were cut into my skull so brain tumors could be removed. But in my case the sections of bone were all put back in place. In your case for the largest one, would a plate be taking the place of removed skull bone? I'm not sure what kind of questions would be useful to ask. Have the docs discussed whether there are any long-terms issues to consider with a plate where bone once was? Also, for that matter, are there any long-term issues with that much radiation going to those specific locations?For each neurosurgeries I was told there was about a 5% chance of complications. But I was also told that surgery was the way to go for those particular tumors. And I did liked having the three of them sliced/scoped out, taken off to the curb, and hauled away like trash. To a tissue bank no doubt. Also, the margins of the resection "holes" got radiation a couple of weeks later (so for me that was the "both" — both surgery and radiation).One factor with radiation might (or might not) be the total volume of tumor that they can irradiate. That might be something else to ask about, whether it's a factor in their choice to recommend surgery for the biggest one. I've heard there's a limit. For my part I had two additional smaller brain tumors (.3 and .6 cm) treated with radiation only. There were probably a number of reasons they chose not to resect, including size and location (one was very deep).How do you feel about second opinions? At a treatment juncture at least, I think they're very useful in the case that the 2 docs agree, at least as much as when they disagree!Good luck with your choices. – Kyle-
- August 31, 2014 at 3:52 pm
For recovery, after each neurosurgery they made me stay in the hospital for 2 nights. Guessing recovery might be similar for the kind of surgery you are considering? The first one (single resection) was much harder in the following weeks than the second one (double resection), where I felt better as soon as I got home. I'm sure many variables account for the second recovery being easier. Also I had a lot more pressure the second time so the pressure-related and went away after the "scooping out" got done. There is no particularly visible scarring in any of the resection 3 area, and that's with me in the not-much-hair club.
Getting the radiation was super easy, all outpatient. It was targeted on the inside of brain, rather than the dura or bone. In the ensuing months after radiation, "something" was going on in several of the irradiated locations. At one point they did 3 MRIs in a 10-week period trying to figure out if it was swelling from IPI, "radiation effect", and/or tumor activity. But that all seemed to resolve within a year.
Which way are you leaining (surgery, radiation or both?)
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- August 31, 2014 at 3:52 pm
For recovery, after each neurosurgery they made me stay in the hospital for 2 nights. Guessing recovery might be similar for the kind of surgery you are considering? The first one (single resection) was much harder in the following weeks than the second one (double resection), where I felt better as soon as I got home. I'm sure many variables account for the second recovery being easier. Also I had a lot more pressure the second time so the pressure-related and went away after the "scooping out" got done. There is no particularly visible scarring in any of the resection 3 area, and that's with me in the not-much-hair club.
Getting the radiation was super easy, all outpatient. It was targeted on the inside of brain, rather than the dura or bone. In the ensuing months after radiation, "something" was going on in several of the irradiated locations. At one point they did 3 MRIs in a 10-week period trying to figure out if it was swelling from IPI, "radiation effect", and/or tumor activity. But that all seemed to resolve within a year.
Which way are you leaining (surgery, radiation or both?)
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- August 31, 2014 at 4:13 pm
Thanks Kyle. Although I have 3 tumors in my head they are only talking about this bigger one that grew. My Mayo onc doc is the one that wants it radiated. My local radiation doc is working to figure out the best way to get at it. My local onc doc is the one that thought maybe surgery would be better. He mentioned a plate but nothing about long term issues with it.
My radiation doc is working on the amount of radiation to that area basically trying to get at it and minimize the amount of brain tissue affected but still have enough radiation to affect the tumor. Last time he was thinking more around 4100 which I think is 4 gray per zap but he's still working on it. I think it is a little too big for a single beam but he's good at various beams and angles and things.
So yeah I'll be talking to my Mayo doc on the 3rd. See what he says.
I'm actually leaning more towards radiation only because it sounds like I might have to miss a dose or more of pd1 if I do surgery. Since pd1 is what has well over a dozen tumors shrinking I think is it very important to keep that pd1 coming. Also I don't want to take steroids for inflammation cause that would probably affect the pd1. Apparently that might be part of surgery. I know steroids knocked the ipi out quick last feb when they gave steroids to keep me from being paralyzed. Granted it did reduce the swelling in my spinal canal. But since the pd1 is working I want no part of steroids. Also I have 3 tumors in my head granted 2 are shrinking it just seems like surgery to 1 does not make sense to me.
So I'm really thinking radiation to the 1 spot in head and 2 in spine. keep on with the pd1. And hope and pray everything shrinks.
I must admit today the pressure in my head is a lot less and that lump on my head is continuing to shrink a little again so that's good.
Artie
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- August 31, 2014 at 4:13 pm
Thanks Kyle. Although I have 3 tumors in my head they are only talking about this bigger one that grew. My Mayo onc doc is the one that wants it radiated. My local radiation doc is working to figure out the best way to get at it. My local onc doc is the one that thought maybe surgery would be better. He mentioned a plate but nothing about long term issues with it.
My radiation doc is working on the amount of radiation to that area basically trying to get at it and minimize the amount of brain tissue affected but still have enough radiation to affect the tumor. Last time he was thinking more around 4100 which I think is 4 gray per zap but he's still working on it. I think it is a little too big for a single beam but he's good at various beams and angles and things.
So yeah I'll be talking to my Mayo doc on the 3rd. See what he says.
I'm actually leaning more towards radiation only because it sounds like I might have to miss a dose or more of pd1 if I do surgery. Since pd1 is what has well over a dozen tumors shrinking I think is it very important to keep that pd1 coming. Also I don't want to take steroids for inflammation cause that would probably affect the pd1. Apparently that might be part of surgery. I know steroids knocked the ipi out quick last feb when they gave steroids to keep me from being paralyzed. Granted it did reduce the swelling in my spinal canal. But since the pd1 is working I want no part of steroids. Also I have 3 tumors in my head granted 2 are shrinking it just seems like surgery to 1 does not make sense to me.
So I'm really thinking radiation to the 1 spot in head and 2 in spine. keep on with the pd1. And hope and pray everything shrinks.
I must admit today the pressure in my head is a lot less and that lump on my head is continuing to shrink a little again so that's good.
Artie
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- September 2, 2014 at 6:49 pm
Hi Artie, meant to respond a little sooner. I continue to be glad to hear that you're seeing some response to PD-1, but also sorry that you're still having to deal with these spinal and cranial mets, too. After one of your recent posts, it sounded like at least the largest of the cranial mets is basically a bone met. I think you know most of my history, at least when it comes to the bone mets I've had, but to recap, I've had six bone mets, but all in the "long bones" of my limbs — three in my left tibia, one each in my left and right femurs, and one in my left proximal humerus. All have been treated with a combination of radiation and surgery. The one in my humerus was first and by the time it was treated, radiation wasn't an option, so I have a 10" titanium rod in there now. The others in my leg bones were all treated with radiation first (at different points during 2011 and 2012), with two of the five eventually needing surgery at least two years after finishing radiation.
I've also had a single 2.5-cm brain met for which I had a craniiotomy followed by SRS (CyberKnife) in early 2013 that went well — surgery on a Tuesday, felt better the day after the surgery than I did the day before, and home on Thursday. I've had some complications this summer from what appears now to be radiation necrosis (not new tumor, we think) that can occur in 10-15% of SRS patients, and which now appears to be resolving. Swelling and "new enhancement" around the original tumor bed showed up on my June MRI, started on steroids (dexamethasone), had a repeat MRI in late July that showed improvement, little to no enhancement around the tumor bed, swelling reduced by about half. We started tapering the steroids then and I'm just about done — none too soon because they've been pretty awful, as bad as any part of my 4 years at Stage IV.
For your case, though, I'm guessing that from a surgical perspective, a cranial bone met is treated differently than one in the "long bones". My shoulder surgery was pretty radical, again, a 10" rod that includes the "ball" of the ball-and-socket of the shoulder, but the two surgeries to my left leg (one to the femur and one to the tibia) were pretty straightforward and simple (as much as a surgeries can be) — drill into the bone (the mets were in the central canal where the marrow is located), scoop out the met, fill it with bone cement, and then close up the cortex (the hard outer part) with artificial bone graft… the bone is like new.
I'd get some answers about what the surgery (and plating, I assume) would entail from a recovery perspective, as well as any ongoing complications or limitations. I also think your approach of considering radiation first is sound, especially if surgery might impact your PD-1 treatments. I assume that just like most any other met, including bone mets, if there isn't a response to radiation, or if there's an initial response with later progression, surgery would still be an option. And hopefully the radiation would quickly have a palliative effect for you, too, and ease some of the pain you're feeling.
Wishing you the best for your appointment (tomorrow?), let us know how it goes.
Joe
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- September 5, 2014 at 3:28 pm
Thank you Joe. You sure have been through a lot. Yeah my Mayo med onc doc wants it radiated and my local radiation onc doc is going to fit it in with the spine radiation. Basically MWF spine and TTH the one in the skull pressing on the dura. I should find out monday what he plans for the head one. If this shrinks the one in my head then I can stay on the PD1 and everything should be great I hope.
Artie
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- September 5, 2014 at 3:28 pm
Thank you Joe. You sure have been through a lot. Yeah my Mayo med onc doc wants it radiated and my local radiation onc doc is going to fit it in with the spine radiation. Basically MWF spine and TTH the one in the skull pressing on the dura. I should find out monday what he plans for the head one. If this shrinks the one in my head then I can stay on the PD1 and everything should be great I hope.
Artie
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- September 5, 2014 at 3:28 pm
Thank you Joe. You sure have been through a lot. Yeah my Mayo med onc doc wants it radiated and my local radiation onc doc is going to fit it in with the spine radiation. Basically MWF spine and TTH the one in the skull pressing on the dura. I should find out monday what he plans for the head one. If this shrinks the one in my head then I can stay on the PD1 and everything should be great I hope.
Artie
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- September 2, 2014 at 6:49 pm
Hi Artie, meant to respond a little sooner. I continue to be glad to hear that you're seeing some response to PD-1, but also sorry that you're still having to deal with these spinal and cranial mets, too. After one of your recent posts, it sounded like at least the largest of the cranial mets is basically a bone met. I think you know most of my history, at least when it comes to the bone mets I've had, but to recap, I've had six bone mets, but all in the "long bones" of my limbs — three in my left tibia, one each in my left and right femurs, and one in my left proximal humerus. All have been treated with a combination of radiation and surgery. The one in my humerus was first and by the time it was treated, radiation wasn't an option, so I have a 10" titanium rod in there now. The others in my leg bones were all treated with radiation first (at different points during 2011 and 2012), with two of the five eventually needing surgery at least two years after finishing radiation.
I've also had a single 2.5-cm brain met for which I had a craniiotomy followed by SRS (CyberKnife) in early 2013 that went well — surgery on a Tuesday, felt better the day after the surgery than I did the day before, and home on Thursday. I've had some complications this summer from what appears now to be radiation necrosis (not new tumor, we think) that can occur in 10-15% of SRS patients, and which now appears to be resolving. Swelling and "new enhancement" around the original tumor bed showed up on my June MRI, started on steroids (dexamethasone), had a repeat MRI in late July that showed improvement, little to no enhancement around the tumor bed, swelling reduced by about half. We started tapering the steroids then and I'm just about done — none too soon because they've been pretty awful, as bad as any part of my 4 years at Stage IV.
For your case, though, I'm guessing that from a surgical perspective, a cranial bone met is treated differently than one in the "long bones". My shoulder surgery was pretty radical, again, a 10" rod that includes the "ball" of the ball-and-socket of the shoulder, but the two surgeries to my left leg (one to the femur and one to the tibia) were pretty straightforward and simple (as much as a surgeries can be) — drill into the bone (the mets were in the central canal where the marrow is located), scoop out the met, fill it with bone cement, and then close up the cortex (the hard outer part) with artificial bone graft… the bone is like new.
I'd get some answers about what the surgery (and plating, I assume) would entail from a recovery perspective, as well as any ongoing complications or limitations. I also think your approach of considering radiation first is sound, especially if surgery might impact your PD-1 treatments. I assume that just like most any other met, including bone mets, if there isn't a response to radiation, or if there's an initial response with later progression, surgery would still be an option. And hopefully the radiation would quickly have a palliative effect for you, too, and ease some of the pain you're feeling.
Wishing you the best for your appointment (tomorrow?), let us know how it goes.
Joe
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- September 2, 2014 at 6:49 pm
Hi Artie, meant to respond a little sooner. I continue to be glad to hear that you're seeing some response to PD-1, but also sorry that you're still having to deal with these spinal and cranial mets, too. After one of your recent posts, it sounded like at least the largest of the cranial mets is basically a bone met. I think you know most of my history, at least when it comes to the bone mets I've had, but to recap, I've had six bone mets, but all in the "long bones" of my limbs — three in my left tibia, one each in my left and right femurs, and one in my left proximal humerus. All have been treated with a combination of radiation and surgery. The one in my humerus was first and by the time it was treated, radiation wasn't an option, so I have a 10" titanium rod in there now. The others in my leg bones were all treated with radiation first (at different points during 2011 and 2012), with two of the five eventually needing surgery at least two years after finishing radiation.
I've also had a single 2.5-cm brain met for which I had a craniiotomy followed by SRS (CyberKnife) in early 2013 that went well — surgery on a Tuesday, felt better the day after the surgery than I did the day before, and home on Thursday. I've had some complications this summer from what appears now to be radiation necrosis (not new tumor, we think) that can occur in 10-15% of SRS patients, and which now appears to be resolving. Swelling and "new enhancement" around the original tumor bed showed up on my June MRI, started on steroids (dexamethasone), had a repeat MRI in late July that showed improvement, little to no enhancement around the tumor bed, swelling reduced by about half. We started tapering the steroids then and I'm just about done — none too soon because they've been pretty awful, as bad as any part of my 4 years at Stage IV.
For your case, though, I'm guessing that from a surgical perspective, a cranial bone met is treated differently than one in the "long bones". My shoulder surgery was pretty radical, again, a 10" rod that includes the "ball" of the ball-and-socket of the shoulder, but the two surgeries to my left leg (one to the femur and one to the tibia) were pretty straightforward and simple (as much as a surgeries can be) — drill into the bone (the mets were in the central canal where the marrow is located), scoop out the met, fill it with bone cement, and then close up the cortex (the hard outer part) with artificial bone graft… the bone is like new.
I'd get some answers about what the surgery (and plating, I assume) would entail from a recovery perspective, as well as any ongoing complications or limitations. I also think your approach of considering radiation first is sound, especially if surgery might impact your PD-1 treatments. I assume that just like most any other met, including bone mets, if there isn't a response to radiation, or if there's an initial response with later progression, surgery would still be an option. And hopefully the radiation would quickly have a palliative effect for you, too, and ease some of the pain you're feeling.
Wishing you the best for your appointment (tomorrow?), let us know how it goes.
Joe
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- August 31, 2014 at 4:13 pm
Thanks Kyle. Although I have 3 tumors in my head they are only talking about this bigger one that grew. My Mayo onc doc is the one that wants it radiated. My local radiation doc is working to figure out the best way to get at it. My local onc doc is the one that thought maybe surgery would be better. He mentioned a plate but nothing about long term issues with it.
My radiation doc is working on the amount of radiation to that area basically trying to get at it and minimize the amount of brain tissue affected but still have enough radiation to affect the tumor. Last time he was thinking more around 4100 which I think is 4 gray per zap but he's still working on it. I think it is a little too big for a single beam but he's good at various beams and angles and things.
So yeah I'll be talking to my Mayo doc on the 3rd. See what he says.
I'm actually leaning more towards radiation only because it sounds like I might have to miss a dose or more of pd1 if I do surgery. Since pd1 is what has well over a dozen tumors shrinking I think is it very important to keep that pd1 coming. Also I don't want to take steroids for inflammation cause that would probably affect the pd1. Apparently that might be part of surgery. I know steroids knocked the ipi out quick last feb when they gave steroids to keep me from being paralyzed. Granted it did reduce the swelling in my spinal canal. But since the pd1 is working I want no part of steroids. Also I have 3 tumors in my head granted 2 are shrinking it just seems like surgery to 1 does not make sense to me.
So I'm really thinking radiation to the 1 spot in head and 2 in spine. keep on with the pd1. And hope and pray everything shrinks.
I must admit today the pressure in my head is a lot less and that lump on my head is continuing to shrink a little again so that's good.
Artie
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- August 31, 2014 at 3:52 pm
For recovery, after each neurosurgery they made me stay in the hospital for 2 nights. Guessing recovery might be similar for the kind of surgery you are considering? The first one (single resection) was much harder in the following weeks than the second one (double resection), where I felt better as soon as I got home. I'm sure many variables account for the second recovery being easier. Also I had a lot more pressure the second time so the pressure-related and went away after the "scooping out" got done. There is no particularly visible scarring in any of the resection 3 area, and that's with me in the not-much-hair club.
Getting the radiation was super easy, all outpatient. It was targeted on the inside of brain, rather than the dura or bone. In the ensuing months after radiation, "something" was going on in several of the irradiated locations. At one point they did 3 MRIs in a 10-week period trying to figure out if it was swelling from IPI, "radiation effect", and/or tumor activity. But that all seemed to resolve within a year.
Which way are you leaining (surgery, radiation or both?)
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- August 31, 2014 at 5:33 am
Artie,
A total of 3 (circular?) holes were cut into my skull so brain tumors could be removed. But in my case the sections of bone were all put back in place. In your case for the largest one, would a plate be taking the place of removed skull bone? I'm not sure what kind of questions would be useful to ask. Have the docs discussed whether there are any long-terms issues to consider with a plate where bone once was? Also, for that matter, are there any long-term issues with that much radiation going to those specific locations?For each neurosurgeries I was told there was about a 5% chance of complications. But I was also told that surgery was the way to go for those particular tumors. And I did liked having the three of them sliced/scoped out, taken off to the curb, and hauled away like trash. To a tissue bank no doubt. Also, the margins of the resection "holes" got radiation a couple of weeks later (so for me that was the "both" — both surgery and radiation).One factor with radiation might (or might not) be the total volume of tumor that they can irradiate. That might be something else to ask about, whether it's a factor in their choice to recommend surgery for the biggest one. I've heard there's a limit. For my part I had two additional smaller brain tumors (.3 and .6 cm) treated with radiation only. There were probably a number of reasons they chose not to resect, including size and location (one was very deep).How do you feel about second opinions? At a treatment juncture at least, I think they're very useful in the case that the 2 docs agree, at least as much as when they disagree!Good luck with your choices. – Kyle
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