› Forums › General Melanoma Community › PET scans for Brain Melanoma
- This topic has 30 replies, 7 voices, and was last updated 10 years, 8 months ago by
Rita and Charles.
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- June 20, 2015 at 5:03 pm
Does anyone know if the PET scans work for brain?? We met with the doctor and the brain area "lit up" – he said that was normal so I assumed that the PET doesn't work the same way for brain activity. They have ordered a brain MRI………..but any feedback you have is great for us to learn.
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- June 20, 2015 at 7:59 pm
A PET scan can show abnormalities, but a MRI with contrast gives the doctors a much clearer image of the abnormality (i.e. brain met/tumor).
I will again recommend that you get a 2nd or 3rd opinion and would further recommend having every treatment done under one roof. – My Mother had gamma knife radiation treatment in Beverly Hills but her oncologist was at USC, we were referred there by the doctor who discovered the undiagnosed brain mets from a scan done in Beverly Hills. The radiologist missed one tumor and the neurooncologist he worked with gave us terrible advice, they did not communicate with each other and neither communicated with her oncologist at USC. I was the go between and even then was not provided with enough information to provide to her oncologist. When we had an emergency consult at USC, regarding my Mom's brain MRI in April of 2014, the radiologist (Dr. Eric Chang) at USC found 5 tumors in her prefrontal lobe alone and everyone one needed treatment. We were told we should "watch and see" by the doctors in Beverly Hills and that she only had 1 tumor that was of concern. However, a week after we were given that "advice" Dr. Chang and his team treated 17 tumors with gamma knife radiation and we were told she should have been treated much sooner…
Since we brought things under one roof I've noticed that all the doctors communicate among themselves about what is discovered between various appointments, which I think provides much better care and they are really on top of things. I am not sure that this happens at every hospital, but the care my Mom has received has been excellent at USC.
My Mom was diagnosed with Stage IV cancer with brain mets in November 2013. (She is RAF positive.) Dr. Mike Wong recommended Yervoy treatment because of the synergistic effects it has with gamma knife radiation. My Mom has done amazingly well even with have 25 brain tumors treated (18 tumors on here head, 1 on her neck, 6 in her trunk and 25 brain mets.) The lesions on her head and neck are gone and the lesions in her trunk have either disappeared, or are the size of pencil lead (est of 13mm down to .5 – .6mm.) Despite the number of brain mets she had have No cognitive issues. She has had a reoccurrence that was discovered earlier this month in a tumor that was treated in Beverly Hills, but she was a super responder to Yervoy and she should do as well, if not better, on Keytruda because of this after her craniotomy she is scheduled for this week.
If this is a brain met, which it sounds like it is a good possibility of, you want to find the best doctor you can who can preform gamma knife radiation for your husband. Here is a link to Dr. Eric Chang's bio. I don't know that you can find a more experienced doctor than him in the area and I'd recommend that you get an appointment with him, even if it's a 2nd opinion, and Dr. Wong.
http://www.keckmedicine.org/doctor/eric-chang/
Good Luck!
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- June 21, 2015 at 12:45 am
Thank you so much, and yes – we are hoping to confirm a melanoma specialist at ucsd next week for a 2nd opinion. I see many health insurance wars ahead for us as the one recommended isn't in our network but at least we can start somewhere. Thank you for your recommendations, I am keeping a huge list – getting real time info from you is a huge reource. Thank you. I hope that your contiues to do well _ Rita
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- June 21, 2015 at 5:17 am
Be very very careful with insurance issues. Call your insurance broker and find out what is and is not possible before you go to the appointment.
You might be able to use UCSD for a consult and have to pay out of network prices now, but doing this long term can wreck your finances. So be very very careful about out of network treatment. If UCSD is out of network now it may not be possible to get into their network. The last thing you need is to find out after the fact that treatment will only be covered at out of network prices. Treatment can last many years and this can severely affect your finances.
You also might look into clinical trials. In some cases this can be the preferred treatment.
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- June 21, 2015 at 5:17 am
Be very very careful with insurance issues. Call your insurance broker and find out what is and is not possible before you go to the appointment.
You might be able to use UCSD for a consult and have to pay out of network prices now, but doing this long term can wreck your finances. So be very very careful about out of network treatment. If UCSD is out of network now it may not be possible to get into their network. The last thing you need is to find out after the fact that treatment will only be covered at out of network prices. Treatment can last many years and this can severely affect your finances.
You also might look into clinical trials. In some cases this can be the preferred treatment.
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- June 21, 2015 at 5:17 am
Be very very careful with insurance issues. Call your insurance broker and find out what is and is not possible before you go to the appointment.
You might be able to use UCSD for a consult and have to pay out of network prices now, but doing this long term can wreck your finances. So be very very careful about out of network treatment. If UCSD is out of network now it may not be possible to get into their network. The last thing you need is to find out after the fact that treatment will only be covered at out of network prices. Treatment can last many years and this can severely affect your finances.
You also might look into clinical trials. In some cases this can be the preferred treatment.
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- June 21, 2015 at 12:45 am
Thank you so much, and yes – we are hoping to confirm a melanoma specialist at ucsd next week for a 2nd opinion. I see many health insurance wars ahead for us as the one recommended isn't in our network but at least we can start somewhere. Thank you for your recommendations, I am keeping a huge list – getting real time info from you is a huge reource. Thank you. I hope that your contiues to do well _ Rita
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- June 21, 2015 at 12:45 am
Thank you so much, and yes – we are hoping to confirm a melanoma specialist at ucsd next week for a 2nd opinion. I see many health insurance wars ahead for us as the one recommended isn't in our network but at least we can start somewhere. Thank you for your recommendations, I am keeping a huge list – getting real time info from you is a huge reource. Thank you. I hope that your contiues to do well _ Rita
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- June 20, 2015 at 7:59 pm
A PET scan can show abnormalities, but a MRI with contrast gives the doctors a much clearer image of the abnormality (i.e. brain met/tumor).
I will again recommend that you get a 2nd or 3rd opinion and would further recommend having every treatment done under one roof. – My Mother had gamma knife radiation treatment in Beverly Hills but her oncologist was at USC, we were referred there by the doctor who discovered the undiagnosed brain mets from a scan done in Beverly Hills. The radiologist missed one tumor and the neurooncologist he worked with gave us terrible advice, they did not communicate with each other and neither communicated with her oncologist at USC. I was the go between and even then was not provided with enough information to provide to her oncologist. When we had an emergency consult at USC, regarding my Mom's brain MRI in April of 2014, the radiologist (Dr. Eric Chang) at USC found 5 tumors in her prefrontal lobe alone and everyone one needed treatment. We were told we should "watch and see" by the doctors in Beverly Hills and that she only had 1 tumor that was of concern. However, a week after we were given that "advice" Dr. Chang and his team treated 17 tumors with gamma knife radiation and we were told she should have been treated much sooner…
Since we brought things under one roof I've noticed that all the doctors communicate among themselves about what is discovered between various appointments, which I think provides much better care and they are really on top of things. I am not sure that this happens at every hospital, but the care my Mom has received has been excellent at USC.
My Mom was diagnosed with Stage IV cancer with brain mets in November 2013. (She is RAF positive.) Dr. Mike Wong recommended Yervoy treatment because of the synergistic effects it has with gamma knife radiation. My Mom has done amazingly well even with have 25 brain tumors treated (18 tumors on here head, 1 on her neck, 6 in her trunk and 25 brain mets.) The lesions on her head and neck are gone and the lesions in her trunk have either disappeared, or are the size of pencil lead (est of 13mm down to .5 – .6mm.) Despite the number of brain mets she had have No cognitive issues. She has had a reoccurrence that was discovered earlier this month in a tumor that was treated in Beverly Hills, but she was a super responder to Yervoy and she should do as well, if not better, on Keytruda because of this after her craniotomy she is scheduled for this week.
If this is a brain met, which it sounds like it is a good possibility of, you want to find the best doctor you can who can preform gamma knife radiation for your husband. Here is a link to Dr. Eric Chang's bio. I don't know that you can find a more experienced doctor than him in the area and I'd recommend that you get an appointment with him, even if it's a 2nd opinion, and Dr. Wong.
http://www.keckmedicine.org/doctor/eric-chang/
Good Luck!
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- June 20, 2015 at 7:59 pm
A PET scan can show abnormalities, but a MRI with contrast gives the doctors a much clearer image of the abnormality (i.e. brain met/tumor).
I will again recommend that you get a 2nd or 3rd opinion and would further recommend having every treatment done under one roof. – My Mother had gamma knife radiation treatment in Beverly Hills but her oncologist was at USC, we were referred there by the doctor who discovered the undiagnosed brain mets from a scan done in Beverly Hills. The radiologist missed one tumor and the neurooncologist he worked with gave us terrible advice, they did not communicate with each other and neither communicated with her oncologist at USC. I was the go between and even then was not provided with enough information to provide to her oncologist. When we had an emergency consult at USC, regarding my Mom's brain MRI in April of 2014, the radiologist (Dr. Eric Chang) at USC found 5 tumors in her prefrontal lobe alone and everyone one needed treatment. We were told we should "watch and see" by the doctors in Beverly Hills and that she only had 1 tumor that was of concern. However, a week after we were given that "advice" Dr. Chang and his team treated 17 tumors with gamma knife radiation and we were told she should have been treated much sooner…
Since we brought things under one roof I've noticed that all the doctors communicate among themselves about what is discovered between various appointments, which I think provides much better care and they are really on top of things. I am not sure that this happens at every hospital, but the care my Mom has received has been excellent at USC.
My Mom was diagnosed with Stage IV cancer with brain mets in November 2013. (She is RAF positive.) Dr. Mike Wong recommended Yervoy treatment because of the synergistic effects it has with gamma knife radiation. My Mom has done amazingly well even with have 25 brain tumors treated (18 tumors on here head, 1 on her neck, 6 in her trunk and 25 brain mets.) The lesions on her head and neck are gone and the lesions in her trunk have either disappeared, or are the size of pencil lead (est of 13mm down to .5 – .6mm.) Despite the number of brain mets she had have No cognitive issues. She has had a reoccurrence that was discovered earlier this month in a tumor that was treated in Beverly Hills, but she was a super responder to Yervoy and she should do as well, if not better, on Keytruda because of this after her craniotomy she is scheduled for this week.
If this is a brain met, which it sounds like it is a good possibility of, you want to find the best doctor you can who can preform gamma knife radiation for your husband. Here is a link to Dr. Eric Chang's bio. I don't know that you can find a more experienced doctor than him in the area and I'd recommend that you get an appointment with him, even if it's a 2nd opinion, and Dr. Wong.
http://www.keckmedicine.org/doctor/eric-chang/
Good Luck!
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- June 20, 2015 at 8:33 pm
A PET scan will always light up in the brain because the scan reveals areas of high sugar absorption. Rapidly growing cells (like tumors) use a lot of sugar for energy. That is why the brain always uptakes a lot and lights up. Women's ovaries will light up too during certain times of the menstrual cycle. This is why they always do an MRI to check for brain mets.
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- June 20, 2015 at 8:33 pm
A PET scan will always light up in the brain because the scan reveals areas of high sugar absorption. Rapidly growing cells (like tumors) use a lot of sugar for energy. That is why the brain always uptakes a lot and lights up. Women's ovaries will light up too during certain times of the menstrual cycle. This is why they always do an MRI to check for brain mets.
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- June 20, 2015 at 8:33 pm
A PET scan will always light up in the brain because the scan reveals areas of high sugar absorption. Rapidly growing cells (like tumors) use a lot of sugar for energy. That is why the brain always uptakes a lot and lights up. Women's ovaries will light up too during certain times of the menstrual cycle. This is why they always do an MRI to check for brain mets.
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- June 20, 2015 at 9:03 pm
My husbands brain mets were found on his CT. Then he had an MRI as part of the prep for STS. Be sure to ask for 1mm cuts on the MRI. The norm is 5mm.
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- June 20, 2015 at 10:46 pm
I agree that it is best to have your primary melanoma specialist coordinate with the other doctors for the brain met and they should all work for the same medical facility.
I urge you to at least get a second opion with Dr. Daniels, who is a very experienced melanoma specialist at UCSD Moores Cancer Center. UCSD Moores Cancer Center also has a top notch facility and doctors to deal with Brain Mets. What you want to ask for when Charles has his Brain MRI is that you want SRS protocol which slices the images 1mm.
Dr. Greg Daniels contact information is 858-246-0580 to make an appt.
Good Luck
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- June 21, 2015 at 12:47 am
Thank you, acutally it is Dr. Daniels we hope to get an appointment with – another friend recommended him, he took care of her husband. He sounds like a life saver.
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- June 21, 2015 at 12:47 am
Thank you, acutally it is Dr. Daniels we hope to get an appointment with – another friend recommended him, he took care of her husband. He sounds like a life saver.
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- June 21, 2015 at 12:47 am
Thank you, acutally it is Dr. Daniels we hope to get an appointment with – another friend recommended him, he took care of her husband. He sounds like a life saver.
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- June 23, 2015 at 3:46 am
We meet with Dr. Daniel's on Thusday – I feel pretty excited!
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- June 23, 2015 at 3:46 am
We meet with Dr. Daniel's on Thusday – I feel pretty excited!
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- June 23, 2015 at 3:46 am
We meet with Dr. Daniel's on Thusday – I feel pretty excited!
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- June 20, 2015 at 10:46 pm
I agree that it is best to have your primary melanoma specialist coordinate with the other doctors for the brain met and they should all work for the same medical facility.
I urge you to at least get a second opion with Dr. Daniels, who is a very experienced melanoma specialist at UCSD Moores Cancer Center. UCSD Moores Cancer Center also has a top notch facility and doctors to deal with Brain Mets. What you want to ask for when Charles has his Brain MRI is that you want SRS protocol which slices the images 1mm.
Dr. Greg Daniels contact information is 858-246-0580 to make an appt.
Good Luck
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- June 20, 2015 at 10:46 pm
I agree that it is best to have your primary melanoma specialist coordinate with the other doctors for the brain met and they should all work for the same medical facility.
I urge you to at least get a second opion with Dr. Daniels, who is a very experienced melanoma specialist at UCSD Moores Cancer Center. UCSD Moores Cancer Center also has a top notch facility and doctors to deal with Brain Mets. What you want to ask for when Charles has his Brain MRI is that you want SRS protocol which slices the images 1mm.
Dr. Greg Daniels contact information is 858-246-0580 to make an appt.
Good Luck
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- June 22, 2015 at 9:24 pm
I was offered brain MRI but when I told them I have metal in my head (which I could have removed for the purpose of an MRI), they said a brain CT would work just as well at identifying the existence of mets. And this came from more than one doctor. I'm not sure why one is preferred over the other. Nor why it is usually CT for the body and MRI for the brain (why not MRI for the body?). But I was told the CT could work for the brain.
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- June 22, 2015 at 9:24 pm
I was offered brain MRI but when I told them I have metal in my head (which I could have removed for the purpose of an MRI), they said a brain CT would work just as well at identifying the existence of mets. And this came from more than one doctor. I'm not sure why one is preferred over the other. Nor why it is usually CT for the body and MRI for the brain (why not MRI for the body?). But I was told the CT could work for the brain.
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- June 22, 2015 at 9:24 pm
I was offered brain MRI but when I told them I have metal in my head (which I could have removed for the purpose of an MRI), they said a brain CT would work just as well at identifying the existence of mets. And this came from more than one doctor. I'm not sure why one is preferred over the other. Nor why it is usually CT for the body and MRI for the brain (why not MRI for the body?). But I was told the CT could work for the brain.
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