Frequency of scans

I can only say that I wish my husband had MRI's of the brain. For an entire year he had PET scans, some of which included brain. We now know MRI's seem to be what really picks it up, his melanoma is now in the brain after only having PER scans. I would ask for an MRI every few months, even if we had to pay for it. 

I can only say that I wish my husband had MRI's of the brain. For an entire year he had PET scans, some of which included brain. We now know MRI's seem to be what really picks it up, his melanoma is now in the brain after only having PER scans. I would ask for an MRI every few months, even if we had to pay for it. 

I can only say that I wish my husband had MRI's of the brain. For an entire year he had PET scans, some of which included brain. We now know MRI's seem to be what really picks it up, his melanoma is now in the brain after only having PER scans. I would ask for an MRI every few months, even if we had to pay for it. 

With only PET scans, yes mets can be hard to see in the brain and other soft tissue because it soaks up so much of the radioactive sugar. I get PET/CT combo scans as that is the standard where I get treated, so the CT and PET are compared each time, things can be seen in the brain in CT scans and furthur investigated with more detail using an MRI. I totally agree that melanoma patients should have more brain MRIs than what is typically done.

With only PET scans, yes mets can be hard to see in the brain and other soft tissue because it soaks up so much of the radioactive sugar. I get PET/CT combo scans as that is the standard where I get treated, so the CT and PET are compared each time, things can be seen in the brain in CT scans and furthur investigated with more detail using an MRI. I totally agree that melanoma patients should have more brain MRIs than what is typically done.

With only PET scans, yes mets can be hard to see in the brain and other soft tissue because it soaks up so much of the radioactive sugar. I get PET/CT combo scans as that is the standard where I get treated, so the CT and PET are compared each time, things can be seen in the brain in CT scans and furthur investigated with more detail using an MRI. I totally agree that melanoma patients should have more brain MRIs than what is typically done.

Hello there, I believe I am the friend Janner is speaking of!  Yes, stage 3C, no scans after interferon treatment in 2001/2002.  I had a huge problem with U of M's no scan policy too.  I saw everyone else on this site having regular scans and thought I needed them as well.  I contacted Cleveland Clinic and was told they have the same policy.  Argh.  I was going to go somewhere else or pay for them myself but then a fellow patient at U of M, also stage 3, said to look at all the people we knew on the bulletin board who were no longer with us.  We were all diagnosed at the same time, did pretty much the same treatment (not much for us in 2001 but interferon and clinical trials that failed) but most of them were gone.  The only difference was they had all those scans.  U of M is very careful to not say scans cause progression – they do say that anecdotably (hope that is a word) their patients tend to do better.  I have two friends from my U of M days who are also stage 3C, very poor prognosis, and we are all still fine and well today.  As Janner says, don't kill the messenger.  The other two won't even come to this board anymore.  Talk about getting beat up – we did interferon AND no scans – lol.  If you want more scans, more stress, more radiation, etc. then find another place.  Like Janner said, it is big business and most doctors won't turn you down.  Good luck to you.  I had Dr. Redman at U of M, I really liked him.  I haven't seen him in probably 10 years but I email him every year on my NED date to say thank you.

DebbieH, stage 3C, NED nearly 15 years after interferon and no scans

Hello there, I believe I am the friend Janner is speaking of!  Yes, stage 3C, no scans after interferon treatment in 2001/2002.  I had a huge problem with U of M's no scan policy too.  I saw everyone else on this site having regular scans and thought I needed them as well.  I contacted Cleveland Clinic and was told they have the same policy.  Argh.  I was going to go somewhere else or pay for them myself but then a fellow patient at U of M, also stage 3, said to look at all the people we knew on the bulletin board who were no longer with us.  We were all diagnosed at the same time, did pretty much the same treatment (not much for us in 2001 but interferon and clinical trials that failed) but most of them were gone.  The only difference was they had all those scans.  U of M is very careful to not say scans cause progression – they do say that anecdotably (hope that is a word) their patients tend to do better.  I have two friends from my U of M days who are also stage 3C, very poor prognosis, and we are all still fine and well today.  As Janner says, don't kill the messenger.  The other two won't even come to this board anymore.  Talk about getting beat up – we did interferon AND no scans – lol.  If you want more scans, more stress, more radiation, etc. then find another place.  Like Janner said, it is big business and most doctors won't turn you down.  Good luck to you.  I had Dr. Redman at U of M, I really liked him.  I haven't seen him in probably 10 years but I email him every year on my NED date to say thank you.

DebbieH, stage 3C, NED nearly 15 years after interferon and no scans

Hello there, I believe I am the friend Janner is speaking of!  Yes, stage 3C, no scans after interferon treatment in 2001/2002.  I had a huge problem with U of M's no scan policy too.  I saw everyone else on this site having regular scans and thought I needed them as well.  I contacted Cleveland Clinic and was told they have the same policy.  Argh.  I was going to go somewhere else or pay for them myself but then a fellow patient at U of M, also stage 3, said to look at all the people we knew on the bulletin board who were no longer with us.  We were all diagnosed at the same time, did pretty much the same treatment (not much for us in 2001 but interferon and clinical trials that failed) but most of them were gone.  The only difference was they had all those scans.  U of M is very careful to not say scans cause progression – they do say that anecdotably (hope that is a word) their patients tend to do better.  I have two friends from my U of M days who are also stage 3C, very poor prognosis, and we are all still fine and well today.  As Janner says, don't kill the messenger.  The other two won't even come to this board anymore.  Talk about getting beat up – we did interferon AND no scans – lol.  If you want more scans, more stress, more radiation, etc. then find another place.  Like Janner said, it is big business and most doctors won't turn you down.  Good luck to you.  I had Dr. Redman at U of M, I really liked him.  I haven't seen him in probably 10 years but I email him every year on my NED date to say thank you.

DebbieH, stage 3C, NED nearly 15 years after interferon and no scans

I also was treated by Dr. Redman. He released me from Oncology after 5+ years of being NED. He told me that the risk from radiation from the scans was higher  than the Mel returning after 5 years NED. From what he said, recurrance at that point typically indicated a less agressive Mel. He also let me know that if there was any indication of a recurrane that I was priority in coming back. I have a great PC thatmonitos my condition and reacts to any concerns that arise. I had a few scares that resulted in CT scans, but yielded no Mel, only kidney stones. I am now enjoying 8+ years of NED at Stage 4 .

I also was treated by Dr. Redman. He released me from Oncology after 5+ years of being NED. He told me that the risk from radiation from the scans was higher  than the Mel returning after 5 years NED. From what he said, recurrance at that point typically indicated a less agressive Mel. He also let me know that if there was any indication of a recurrane that I was priority in coming back. I have a great PC thatmonitos my condition and reacts to any concerns that arise. I had a few scares that resulted in CT scans, but yielded no Mel, only kidney stones. I am now enjoying 8+ years of NED at Stage 4 .

I also was treated by Dr. Redman. He released me from Oncology after 5+ years of being NED. He told me that the risk from radiation from the scans was higher  than the Mel returning after 5 years NED. From what he said, recurrance at that point typically indicated a less agressive Mel. He also let me know that if there was any indication of a recurrane that I was priority in coming back. I have a great PC thatmonitos my condition and reacts to any concerns that arise. I had a few scares that resulted in CT scans, but yielded no Mel, only kidney stones. I am now enjoying 8+ years of NED at Stage 4 .

I had one MRI (of the brain) when I was first diagnosed. Since the MRI was clear, they told me that no more MRI's would be necessary. They told me indicators of a brain Mel would be headaches that don't go away, flashes of light, etc. If I encountered any of those symptoms, then they would conduct another MRI. I was seeing Dr. Redman at U of M and I was very comfortable with his care. Of course the anxiety was still there, and still is (to a lesser extent now). Whatever your decision, make sure you're always under the casre of a Mel Specialist. U of M is good because they are very much into research on Mel also.

I had one MRI (of the brain) when I was first diagnosed. Since the MRI was clear, they told me that no more MRI's would be necessary. They told me indicators of a brain Mel would be headaches that don't go away, flashes of light, etc. If I encountered any of those symptoms, then they would conduct another MRI. I was seeing Dr. Redman at U of M and I was very comfortable with his care. Of course the anxiety was still there, and still is (to a lesser extent now). Whatever your decision, make sure you're always under the casre of a Mel Specialist. U of M is good because they are very much into research on Mel also.

I had one MRI (of the brain) when I was first diagnosed. Since the MRI was clear, they told me that no more MRI's would be necessary. They told me indicators of a brain Mel would be headaches that don't go away, flashes of light, etc. If I encountered any of those symptoms, then they would conduct another MRI. I was seeing Dr. Redman at U of M and I was very comfortable with his care. Of course the anxiety was still there, and still is (to a lesser extent now). Whatever your decision, make sure you're always under the casre of a Mel Specialist. U of M is good because they are very much into research on Mel also.