› Forums › General Melanoma Community › PET SCAN AND UPDATE
- This topic has 24 replies, 6 voices, and was last updated 10 years, 7 months ago by
Momofjake.
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- July 30, 2015 at 3:42 am
Well PET last week showed NED. I was a bit nervous because she said abdomen was bright but she felt it was contrasting and wanted to wait on offical radiologist reading. Though she was comfortable with results; I wasn't until I received official word. I've been very fortunate and grateful to my docs and the support I've received here.
We discussed scanning and for those of you familiar with my story, I had the local recurrence this past Jan after doing IPI & IL-2 Combo in Jan 2014. I didn't have clear margins prior to starting treatment and they felt then that I may possibly need surgery after treatment due to perfusion(?). Regardless I had the 3rd recurrence which basically would put me at only 6 months NED now. My onc feels that we can push out scan to 6 months as she has concerns about all the readiation I've been exposed since the fall of 2013. I know many of you have been through more….I'm just very conflicted I what direction to go here. I like the scans to know what's going on…really I guess you like them when they come back NED. There is a tremendous amount of scanxiety a few weeks prior to scan. I guess I just want to give myself the best chance to stay ahead of it because after 3 recurrences I can't stop thinking of if it comes back…I always think like when it comes back. It's hard to balance all of this and if anyone has suggestions…I'm always open to hearing them.
Wishing you all the best!
Josh
- Replies
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- July 30, 2015 at 5:36 am
Hey Josh,
Don't ats on on the awesome report! Your fight has been an inspiration and terrific to see things are going your way. As for managing the scanxiety, for me it's still there almost 4 years of being NED. However, as I put more distance between then and now, It,is always improving. I've focused on my life….be a good husband and father,, dedicate myself to my profession and care of business relative to seeing my docs, etc.
My sincerest wishes for a good life, and of course continued good scans!!
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- July 30, 2015 at 5:36 am
Hey Josh,
Don't ats on on the awesome report! Your fight has been an inspiration and terrific to see things are going your way. As for managing the scanxiety, for me it's still there almost 4 years of being NED. However, as I put more distance between then and now, It,is always improving. I've focused on my life….be a good husband and father,, dedicate myself to my profession and care of business relative to seeing my docs, etc.
My sincerest wishes for a good life, and of course continued good scans!!
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- July 30, 2015 at 5:36 am
Hey Josh,
Don't ats on on the awesome report! Your fight has been an inspiration and terrific to see things are going your way. As for managing the scanxiety, for me it's still there almost 4 years of being NED. However, as I put more distance between then and now, It,is always improving. I've focused on my life….be a good husband and father,, dedicate myself to my profession and care of business relative to seeing my docs, etc.
My sincerest wishes for a good life, and of course continued good scans!!
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- July 30, 2015 at 9:53 am
Hi Josh
Scanxiety is the worst – I don't even get scans, but getting biopsies and waiting on path drives me around the twist.
You're a young man and all the CT/PET scanning does add up in terms of radiation exposure. There is some wisdom in finding the right amount of scanning to give you peace of mind, AND protect your future health. Also, if this rate of scanning was clinically sound, wouldn't it be great to have six months of fun in between the inevitable scanxiety?
I personally would get the clear margins, just for peace of mind – that said, if it makes no difference clinically, why bother? But the margins are all about trying to minimise chance of recurrence, according to my doc, so I only see margins as a good thing. But again, my history is very different to yours and I 100% defer to your knowledge in this area.
I think you are still in the process of finding out what you are going to be comfortable with in terms of scanning/monitoring, that might require a second opinion and a bit of time to think. I wish you all the best and thank you for your update.
Stars
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- July 31, 2015 at 12:44 pm
Thank you Stars….I do enjoy time between for sure…. Though I find myself wondering at times if too much time between can lead to problems. I did have the 3rd Surgery in Jan after treatment finishing treatment in 2014…just wonder if it was too long of a wait. Either way I'm doing well now and will remain diligent. I've had a 2nd opinion from Dr Luke at U of Chicago and he knows my onc and said I'm in good hands. It's hard not worrying at times.
Josh
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- July 31, 2015 at 12:44 pm
Thank you Stars….I do enjoy time between for sure…. Though I find myself wondering at times if too much time between can lead to problems. I did have the 3rd Surgery in Jan after treatment finishing treatment in 2014…just wonder if it was too long of a wait. Either way I'm doing well now and will remain diligent. I've had a 2nd opinion from Dr Luke at U of Chicago and he knows my onc and said I'm in good hands. It's hard not worrying at times.
Josh
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- July 31, 2015 at 12:44 pm
Thank you Stars….I do enjoy time between for sure…. Though I find myself wondering at times if too much time between can lead to problems. I did have the 3rd Surgery in Jan after treatment finishing treatment in 2014…just wonder if it was too long of a wait. Either way I'm doing well now and will remain diligent. I've had a 2nd opinion from Dr Luke at U of Chicago and he knows my onc and said I'm in good hands. It's hard not worrying at times.
Josh
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- July 30, 2015 at 9:53 am
Hi Josh
Scanxiety is the worst – I don't even get scans, but getting biopsies and waiting on path drives me around the twist.
You're a young man and all the CT/PET scanning does add up in terms of radiation exposure. There is some wisdom in finding the right amount of scanning to give you peace of mind, AND protect your future health. Also, if this rate of scanning was clinically sound, wouldn't it be great to have six months of fun in between the inevitable scanxiety?
I personally would get the clear margins, just for peace of mind – that said, if it makes no difference clinically, why bother? But the margins are all about trying to minimise chance of recurrence, according to my doc, so I only see margins as a good thing. But again, my history is very different to yours and I 100% defer to your knowledge in this area.
I think you are still in the process of finding out what you are going to be comfortable with in terms of scanning/monitoring, that might require a second opinion and a bit of time to think. I wish you all the best and thank you for your update.
Stars
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- July 30, 2015 at 9:53 am
Hi Josh
Scanxiety is the worst – I don't even get scans, but getting biopsies and waiting on path drives me around the twist.
You're a young man and all the CT/PET scanning does add up in terms of radiation exposure. There is some wisdom in finding the right amount of scanning to give you peace of mind, AND protect your future health. Also, if this rate of scanning was clinically sound, wouldn't it be great to have six months of fun in between the inevitable scanxiety?
I personally would get the clear margins, just for peace of mind – that said, if it makes no difference clinically, why bother? But the margins are all about trying to minimise chance of recurrence, according to my doc, so I only see margins as a good thing. But again, my history is very different to yours and I 100% defer to your knowledge in this area.
I think you are still in the process of finding out what you are going to be comfortable with in terms of scanning/monitoring, that might require a second opinion and a bit of time to think. I wish you all the best and thank you for your update.
Stars
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- July 30, 2015 at 2:48 pm
Congrats on the good report. If I understand right the pet ct has more radiation than just the ct. Granted the ct has enough. If your doc can see things with just the ct maybe mix things up a little. Like in 3 months have the ct then in 6 or something have the ct with the pet. I know one of the early ipi responders is in his 80s now. He gets a scan every 6 months. They alternate between a ct and a pet. He has never been Ned but he's been stable for many years. Just a thought.
Artie
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- July 30, 2015 at 2:48 pm
Congrats on the good report. If I understand right the pet ct has more radiation than just the ct. Granted the ct has enough. If your doc can see things with just the ct maybe mix things up a little. Like in 3 months have the ct then in 6 or something have the ct with the pet. I know one of the early ipi responders is in his 80s now. He gets a scan every 6 months. They alternate between a ct and a pet. He has never been Ned but he's been stable for many years. Just a thought.
Artie
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- July 30, 2015 at 2:48 pm
Congrats on the good report. If I understand right the pet ct has more radiation than just the ct. Granted the ct has enough. If your doc can see things with just the ct maybe mix things up a little. Like in 3 months have the ct then in 6 or something have the ct with the pet. I know one of the early ipi responders is in his 80s now. He gets a scan every 6 months. They alternate between a ct and a pet. He has never been Ned but he's been stable for many years. Just a thought.
Artie
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- August 2, 2015 at 4:03 am
NED!!! Josh! That's great. I know it is weird not knowing what is around the corner. Hang in there. Hoping you are NED at 83….83 thousand, that is!!! c
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