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Have you been through a crainiotomy (brain tumor biopsy)?

Forums General Melanoma Community Have you been through a crainiotomy (brain tumor biopsy)?

  • Post
    dearfoam
    Participant

      Our Medical Oncologist called today to discuss setting up with the neurosurgeon for a biopsy of Dad's brain tumors. There are a few to choose from, and he says the recovery is better than with the other options (spleen tumor would risk too much bleeding and require a resection/ week+ recovery in hopsital). The point is to send sample off for the BRAF test as the other sample was insufficient.

      Our Medical Oncologist called today to discuss setting up with the neurosurgeon for a biopsy of Dad's brain tumors. There are a few to choose from, and he says the recovery is better than with the other options (spleen tumor would risk too much bleeding and require a resection/ week+ recovery in hopsital). The point is to send sample off for the BRAF test as the other sample was insufficient.

      Just wondering how that has gone for other people. I worry about dad having a crainiotomy just because he has had problems with other biopsies in the past. Back in April he ws in the hospital over a week when biopsy #1 gave him a lung collapse 3 days after, followed by several blood clot problems etc. Biopsy 2 was OK because they still had him in-house for the recovery. But he already has messed up judgement and reasoning; I worry if treatment goes really well, he will have brain damage (though maybe he already does to a degree) and not be able to practice law professionally again (which is all he wants to do).

      However, we will all enjoy telling him he has a hole in his head! We do try to keep things light-hearted.

      Thanks in advance for your thoughts and replies.

      -DF

    Viewing 7 reply threads
    • Replies
        dearfoam
        Participant

          Or a crainiechtomy? I don't know fo rsure which one is right…

            mombase
            Participant

              I have had two craniotomies and each of them had totally different recovery processes. The first one, which turned out to be a large neuroma, was located at the bottom of the skull, close to the brain stem. I was under for twelve hours and it was a very difficult surgery. I was in the hospital for two weeks and basically had to relearn to walk.

              The second one, which turned out to be a melanoma met, was a very easy surgery. It was located at the top right frontal area of the skull and therefore was easy to get to and easy to get out. Three hours of surgery and I could have left the hospital the next day but I elected to stay one more.

              So I guess what I am saying is it depends on the location of the tumor in the brain. I would talk to the neurosurgeon to see if you can get more detailed information on the process.

              Good luck to you!

              Cristy, Stage IV

              mombase
              Participant

                I have had two craniotomies and each of them had totally different recovery processes. The first one, which turned out to be a large neuroma, was located at the bottom of the skull, close to the brain stem. I was under for twelve hours and it was a very difficult surgery. I was in the hospital for two weeks and basically had to relearn to walk.

                The second one, which turned out to be a melanoma met, was a very easy surgery. It was located at the top right frontal area of the skull and therefore was easy to get to and easy to get out. Three hours of surgery and I could have left the hospital the next day but I elected to stay one more.

                So I guess what I am saying is it depends on the location of the tumor in the brain. I would talk to the neurosurgeon to see if you can get more detailed information on the process.

                Good luck to you!

                Cristy, Stage IV

                KatyWI
                Participant

                  Craniectomy is when they totally remove part of your skull.  Yikers!  Craniotomy is when they go in but then put the skull back together again.

                  My craniOTOMY was not too big of a deal.  It does depend on the location in the brain.  Mine was not terribly difficult to access, and I spent only one night in the hospital.

                  Good luck to your dad,

                  KatyWI

                  KatyWI
                  Participant

                    Craniectomy is when they totally remove part of your skull.  Yikers!  Craniotomy is when they go in but then put the skull back together again.

                    My craniOTOMY was not too big of a deal.  It does depend on the location in the brain.  Mine was not terribly difficult to access, and I spent only one night in the hospital.

                    Good luck to your dad,

                    KatyWI

                  dearfoam
                  Participant

                    Or a crainiechtomy? I don't know fo rsure which one is right…

                    kylez
                    Participant

                      DF,

                      I'm surprised that the main focus isn't getting the tumors out of your Dad's brain surgically. And then treating what can't be resected with radiation. And then following that up with whatever systemic treatments are available (where BRAF testing would come into play). In other words why aren't they considering craniotomies, not just to biopys, but to resect as completely as possible the tumors they see in the brain?

                      I had some cognitive impairment before my second, double craniotomy, that fortunately cleared up with full removal of the tumor. On the other hand my first craniotomy put a permanent hole in my visual field.

                      As I understand it, the immune system isn't very strong in the brain compared to the rest of the body, so tumors can grow faster there with less to hold them back. Hence my impression that resection should be at the top of the list where possible.

                      Good luck.

                        dearfoam
                        Participant
                          He’s had 15 whole brain radiation sessions in April and been on Temodar since May. Previously the six brain tumors were non-operable. We saw the radioOnc last week who thinks doing the radiosurgery right now might still cause too much swelling, though two of the largest tumors have shrunk some. This procedure would be a needle biopsy. He will continue Temodar unless test comes back positive for the BRAF mutation. That all of course is speculation on my end after talking to the Melanoma dr. Will see what neurosurgeon has to say Wednesday. (I’ve been wrong before!)
                          I do thank you all for sharing your experiences! It does ease my mind a tiny bit. At this point, I think we have nothing to lose!
                          kylez
                          Participant

                            ah, what your oncologist is doing a lot makes sense under those circumstances, to me as a patient.

                            I hope you're able to do that BRAF test, and hope it comes back positive so he has another treatment option.

                            kylez
                            Participant

                              ah, what your oncologist is doing a lot makes sense under those circumstances, to me as a patient.

                              I hope you're able to do that BRAF test, and hope it comes back positive so he has another treatment option.

                              dearfoam
                              Participant
                                He’s had 15 whole brain radiation sessions in April and been on Temodar since May. Previously the six brain tumors were non-operable. We saw the radioOnc last week who thinks doing the radiosurgery right now might still cause too much swelling, though two of the largest tumors have shrunk some. This procedure would be a needle biopsy. He will continue Temodar unless test comes back positive for the BRAF mutation. That all of course is speculation on my end after talking to the Melanoma dr. Will see what neurosurgeon has to say Wednesday. (I’ve been wrong before!)
                                I do thank you all for sharing your experiences! It does ease my mind a tiny bit. At this point, I think we have nothing to lose!
                              kylez
                              Participant

                                DF,

                                I'm surprised that the main focus isn't getting the tumors out of your Dad's brain surgically. And then treating what can't be resected with radiation. And then following that up with whatever systemic treatments are available (where BRAF testing would come into play). In other words why aren't they considering craniotomies, not just to biopys, but to resect as completely as possible the tumors they see in the brain?

                                I had some cognitive impairment before my second, double craniotomy, that fortunately cleared up with full removal of the tumor. On the other hand my first craniotomy put a permanent hole in my visual field.

                                As I understand it, the immune system isn't very strong in the brain compared to the rest of the body, so tumors can grow faster there with less to hold them back. Hence my impression that resection should be at the top of the list where possible.

                                Good luck.

                                benp
                                Participant

                                  Hi, 

                                  I had a double craniotomy  in late June this year. I was only in hospital for a couple of days. No real post operative pain (considering the magnitude of the procedure), though the healing does take quite some time. There are a couple of areas on my head that are numb, though not really a big deal.

                                  Prior to the operation, I was told there was an approx. 2% chance of something going drasticaly wrong during the surgery (which, thanks to my surgeon, it did not). 

                                  Having had brain surgery is a great excuse when my wife catches me doing something stupid! The way I personally tend to view things is that I pretend that my melanoma has a personality, whichI am fighting. It is one tough bastard. So in order to beat it I've got to go through these tough treatments without batting an eyelid and letting it know that it's getting to me!

                                   

                                  Hope this helps, 

                                  Ben.

                                  benp
                                  Participant

                                    Hi, 

                                    I had a double craniotomy  in late June this year. I was only in hospital for a couple of days. No real post operative pain (considering the magnitude of the procedure), though the healing does take quite some time. There are a couple of areas on my head that are numb, though not really a big deal.

                                    Prior to the operation, I was told there was an approx. 2% chance of something going drasticaly wrong during the surgery (which, thanks to my surgeon, it did not). 

                                    Having had brain surgery is a great excuse when my wife catches me doing something stupid! The way I personally tend to view things is that I pretend that my melanoma has a personality, whichI am fighting. It is one tough bastard. So in order to beat it I've got to go through these tough treatments without batting an eyelid and letting it know that it's getting to me!

                                     

                                    Hope this helps, 

                                    Ben.

                                    dearfoam
                                    Participant

                                      Still up in the air after meeting with Neurosurgeon today. He has been in conversation with our Melanoma dr (the primary Med Onc treating dad), and they are still weighing the risks of the spleenechtomy to retrieve a good sample along with those of the crainiotomy risks.

                                      Neuro says since dad has had clot issues (2 lung clots, one leg clot recently), it might be tricky taking him off his blood thinner for the few day prior and 3-4 weeks post op in order to reduce the higher risk of bleeding in brain during recovery. He wants us to see a surgeon who would weigh in on the spleen side. They would have to remove spleen to get tumor. It's also a big bleed risk, so I imagine the clot issue will still be very prominent in the worry dept. for me. It's also guesstimated at a week long or more in the hospital, but of course will have to see what that surgeon says.

                                      The tumor sites for sampling in the brain are also a mess: the bigger ones=better samples, but in more eloquent and deep areas. easy access=smaller and less likely to give a good tissue sample for testing. 2 brain tumors are on top left area that aren't too deep and maybe not as big but hopefully big enough.

                                      The various abdominal/ pelvis tumors may be too small to provide good tissue samples. Again, have to wait and see what other surgeon thinks there, too. Lungs are out of the question, it seems, due to a reapeat of collapse risk (and bleeding and that they are a "moving target" so to speak).

                                      I'm waiting to hear from the Onc's nurse tomorrow or Friday for our referral for next appointment with surgeon #2, hopefully for next week. I am anxious. Dad's next week "off" Temodar starts next Wed 10/5, then he's normally back on for 3 weeks. I am pretty certain we have to pause treatment for the surgery. I just dont want him to have to wait too long between treatments for the surgery. He was off and extra week and a half while we waited on first BRAF test in early September, and despite the OK-ish (some shrikage, some mild progression) scans at the end of August, he is starting to stumble more, and I am concerned we may have already undone some good.

                                      All this, and we just won't know til we hear back if the sample is suffcuent, and on top of that if it even has the mutation, which added all up is several weeks away from today. Dad cares, but he doesn't study up on any of what's going on. He is very passive, which bothers me a lot. He doesn't seem to notice the skepticism with which they approach this biopsy, and the pros/cons. I just hope we can get it done without complications and it is worth while!

                                      I also really, really want to be able to go on my vacation in November. I have literally had 3 consecutive days off daddy duty since March and am exhausted! Not sure yet how we will arrange for his care. So much happening between now and then!

                                      Take care everyone,

                                      -DF

                                      dearfoam
                                      Participant

                                        Still up in the air after meeting with Neurosurgeon today. He has been in conversation with our Melanoma dr (the primary Med Onc treating dad), and they are still weighing the risks of the spleenechtomy to retrieve a good sample along with those of the crainiotomy risks.

                                        Neuro says since dad has had clot issues (2 lung clots, one leg clot recently), it might be tricky taking him off his blood thinner for the few day prior and 3-4 weeks post op in order to reduce the higher risk of bleeding in brain during recovery. He wants us to see a surgeon who would weigh in on the spleen side. They would have to remove spleen to get tumor. It's also a big bleed risk, so I imagine the clot issue will still be very prominent in the worry dept. for me. It's also guesstimated at a week long or more in the hospital, but of course will have to see what that surgeon says.

                                        The tumor sites for sampling in the brain are also a mess: the bigger ones=better samples, but in more eloquent and deep areas. easy access=smaller and less likely to give a good tissue sample for testing. 2 brain tumors are on top left area that aren't too deep and maybe not as big but hopefully big enough.

                                        The various abdominal/ pelvis tumors may be too small to provide good tissue samples. Again, have to wait and see what other surgeon thinks there, too. Lungs are out of the question, it seems, due to a reapeat of collapse risk (and bleeding and that they are a "moving target" so to speak).

                                        I'm waiting to hear from the Onc's nurse tomorrow or Friday for our referral for next appointment with surgeon #2, hopefully for next week. I am anxious. Dad's next week "off" Temodar starts next Wed 10/5, then he's normally back on for 3 weeks. I am pretty certain we have to pause treatment for the surgery. I just dont want him to have to wait too long between treatments for the surgery. He was off and extra week and a half while we waited on first BRAF test in early September, and despite the OK-ish (some shrikage, some mild progression) scans at the end of August, he is starting to stumble more, and I am concerned we may have already undone some good.

                                        All this, and we just won't know til we hear back if the sample is suffcuent, and on top of that if it even has the mutation, which added all up is several weeks away from today. Dad cares, but he doesn't study up on any of what's going on. He is very passive, which bothers me a lot. He doesn't seem to notice the skepticism with which they approach this biopsy, and the pros/cons. I just hope we can get it done without complications and it is worth while!

                                        I also really, really want to be able to go on my vacation in November. I have literally had 3 consecutive days off daddy duty since March and am exhausted! Not sure yet how we will arrange for his care. So much happening between now and then!

                                        Take care everyone,

                                        -DF

                                    Viewing 7 reply threads
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