Pet Scan/Brain MRI Results

Oh, Josh!  I was so in hopes the scans today would be unequivocably negative.  I don't have any experience with the lung CT scan, but I will pray that this is nothing!

Oh, Josh!  I was so in hopes the scans today would be unequivocably negative.  I don't have any experience with the lung CT scan, but I will pray that this is nothing!

Oh, Josh!  I was so in hopes the scans today would be unequivocably negative.  I don't have any experience with the lung CT scan, but I will pray that this is nothing!

Hey Josh,

CT scan of chest/lungs is nothing, it goes quickly just like an xray.  I believe they used contrast on me so the cancer would light up.  Surgery is the best option for you at this point.  If it is Melanoma you should get on some type of immonotherapy, maybe Ipi (Yervoy).  If this is the only spot and you can remove it you will be back to NED.  I didn't have that option since my melanoma attacked all lobes of my lungs. 

To do a biopsy would be just as invasive as just removing it I would think.  As far as LDH levels I don't believe that is a good indicator.  Are you seeing a melanoma specialist?  I can't remember.  When they remove the met be sure they check it for BRAF.  That is if it is melanoma.  I'm hoping it's nothing but a false positive on the PET scan and the CT scan would verify that.  

All my best to you Josh,

Denise

Hey Josh,

CT scan of chest/lungs is nothing, it goes quickly just like an xray.  I believe they used contrast on me so the cancer would light up.  Surgery is the best option for you at this point.  If it is Melanoma you should get on some type of immonotherapy, maybe Ipi (Yervoy).  If this is the only spot and you can remove it you will be back to NED.  I didn't have that option since my melanoma attacked all lobes of my lungs. 

To do a biopsy would be just as invasive as just removing it I would think.  As far as LDH levels I don't believe that is a good indicator.  Are you seeing a melanoma specialist?  I can't remember.  When they remove the met be sure they check it for BRAF.  That is if it is melanoma.  I'm hoping it's nothing but a false positive on the PET scan and the CT scan would verify that.  

All my best to you Josh,

Denise

Hey Josh,

CT scan of chest/lungs is nothing, it goes quickly just like an xray.  I believe they used contrast on me so the cancer would light up.  Surgery is the best option for you at this point.  If it is Melanoma you should get on some type of immonotherapy, maybe Ipi (Yervoy).  If this is the only spot and you can remove it you will be back to NED.  I didn't have that option since my melanoma attacked all lobes of my lungs. 

To do a biopsy would be just as invasive as just removing it I would think.  As far as LDH levels I don't believe that is a good indicator.  Are you seeing a melanoma specialist?  I can't remember.  When they remove the met be sure they check it for BRAF.  That is if it is melanoma.  I'm hoping it's nothing but a false positive on the PET scan and the CT scan would verify that.  

All my best to you Josh,

Denise

LDH CAN be an indication of organ damage but it isn't a given.  I know a woman who had 70% of her liver involved and still had a normal LDH.  LDH is a useful indicator if it changes, but even that isn't an indication of metastasis.  It's a tool, but not much more.  It's not a guarantee of anything.

Lung nodules are common… let me rephrase that – BENIGN lung nodules are common.  PET scans can easily have false positives and even if the CT sees something in the lung, it doesn't mean it has to be melanoma.  It's much more common to do "watch and wait" with a lung nodule than an immediate biopsy.  Do a scan in 3 months and monitor for any growth.  No growth?  Watch and wait again.  Growth?  Lung biopsies can be difficult depending on the location.  I know for my father, his lung biopsy was the worst thing he did treatment-wise for his cancer.  (He had stage II melanoma at the time but the lung nodule presented more like lung cancer – so the biopsy was a bit more important to determine the type of cancer.  His was lung cancer).

As for how this could just show up in the lungs, that does happen.  Probably somewhere in the 10% range, the melanoma bypasses the lymph vessels and goes through the blood vessels.  So you can have organ involvement without having lymph node involvement.  Again, this doesn't mean your lung nodule is melanoma, but it can happen.

It's easy to be frustrated by everything, but sometimes there isn't an immediate answer and trying to learn how to relax while waiting could be a virtue.  🙂 

LDH CAN be an indication of organ damage but it isn't a given.  I know a woman who had 70% of her liver involved and still had a normal LDH.  LDH is a useful indicator if it changes, but even that isn't an indication of metastasis.  It's a tool, but not much more.  It's not a guarantee of anything.

Lung nodules are common… let me rephrase that – BENIGN lung nodules are common.  PET scans can easily have false positives and even if the CT sees something in the lung, it doesn't mean it has to be melanoma.  It's much more common to do "watch and wait" with a lung nodule than an immediate biopsy.  Do a scan in 3 months and monitor for any growth.  No growth?  Watch and wait again.  Growth?  Lung biopsies can be difficult depending on the location.  I know for my father, his lung biopsy was the worst thing he did treatment-wise for his cancer.  (He had stage II melanoma at the time but the lung nodule presented more like lung cancer – so the biopsy was a bit more important to determine the type of cancer.  His was lung cancer).

As for how this could just show up in the lungs, that does happen.  Probably somewhere in the 10% range, the melanoma bypasses the lymph vessels and goes through the blood vessels.  So you can have organ involvement without having lymph node involvement.  Again, this doesn't mean your lung nodule is melanoma, but it can happen.

It's easy to be frustrated by everything, but sometimes there isn't an immediate answer and trying to learn how to relax while waiting could be a virtue.  🙂 

LDH CAN be an indication of organ damage but it isn't a given.  I know a woman who had 70% of her liver involved and still had a normal LDH.  LDH is a useful indicator if it changes, but even that isn't an indication of metastasis.  It's a tool, but not much more.  It's not a guarantee of anything.

Lung nodules are common… let me rephrase that – BENIGN lung nodules are common.  PET scans can easily have false positives and even if the CT sees something in the lung, it doesn't mean it has to be melanoma.  It's much more common to do "watch and wait" with a lung nodule than an immediate biopsy.  Do a scan in 3 months and monitor for any growth.  No growth?  Watch and wait again.  Growth?  Lung biopsies can be difficult depending on the location.  I know for my father, his lung biopsy was the worst thing he did treatment-wise for his cancer.  (He had stage II melanoma at the time but the lung nodule presented more like lung cancer – so the biopsy was a bit more important to determine the type of cancer.  His was lung cancer).

As for how this could just show up in the lungs, that does happen.  Probably somewhere in the 10% range, the melanoma bypasses the lymph vessels and goes through the blood vessels.  So you can have organ involvement without having lymph node involvement.  Again, this doesn't mean your lung nodule is melanoma, but it can happen.

It's easy to be frustrated by everything, but sometimes there isn't an immediate answer and trying to learn how to relax while waiting could be a virtue.  🙂 

Sorry to hear.

PET has false positives but if there is increasing SUV uptake over a cut-off threshold then it is more likely than not mel.  SUV uptake greater than 2.5-3.0 is common.  More damning if it continues to increase with the folow up scan taken a few minutes later.  Very active infection or other metabolic activity can do the same, but mel is notorious for glowing like lights on a Christmas tree.  You may have this info on your radiologist report.

I was alarmed when my radiologist used the term "this should represent metastasis", I was hoping he used the word could instead.  Nope, he said should, and it was……THERE ARE ALWAYS EXCEPTIONS though.  The CT will give better info.  Waiting for a few weeks / month or two can determine if there is a tumor doubling time.

You don't always get mel mets via the lymphatics.  I am an example of that.

Stage 2A to IV eight years later.  SNB was negative even with PCR.  Had a back x-ray for other reasons when my lung met was accidently discovered years later.  A follow-up PET/CT also found a muscle met in my pectoralis m.  It was too small to see on most scans but the PET picked it right up.  It was very small.

In the end I am still lucky.  Because mel never visited my lymph nodes, I still have all of them!  (Minus my SNB).  No lymphedema.  I am a vet and my SNB was in my right axilla.  Most of the bites I have had were to my right arm / hand.  Someone was looking out for me.

Anyway, the mel met was confirmed with VATS which removed it, and IL-2 took care of the other.  I have been NED for the past 3 years as a result.

If you have to have a met, the lung is probably the best place to have one.  Regardless, keep kicking its A$$.  Let us know how the CT turns out.

The thing that keeps me from going nuts while waiting for scans and results is to research what to do if it is mel.  For me, by having a back up plan or at least the knowledge to discuss it with my docs helps to give me a sense of controlling something I have no control over.  I call it constructive stressing versus stewing.  I also had a few beers along the way :).

Whishing you the best,

Kim

Sorry to hear.

PET has false positives but if there is increasing SUV uptake over a cut-off threshold then it is more likely than not mel.  SUV uptake greater than 2.5-3.0 is common.  More damning if it continues to increase with the folow up scan taken a few minutes later.  Very active infection or other metabolic activity can do the same, but mel is notorious for glowing like lights on a Christmas tree.  You may have this info on your radiologist report.

I was alarmed when my radiologist used the term "this should represent metastasis", I was hoping he used the word could instead.  Nope, he said should, and it was……THERE ARE ALWAYS EXCEPTIONS though.  The CT will give better info.  Waiting for a few weeks / month or two can determine if there is a tumor doubling time.

You don't always get mel mets via the lymphatics.  I am an example of that.

Stage 2A to IV eight years later.  SNB was negative even with PCR.  Had a back x-ray for other reasons when my lung met was accidently discovered years later.  A follow-up PET/CT also found a muscle met in my pectoralis m.  It was too small to see on most scans but the PET picked it right up.  It was very small.

In the end I am still lucky.  Because mel never visited my lymph nodes, I still have all of them!  (Minus my SNB).  No lymphedema.  I am a vet and my SNB was in my right axilla.  Most of the bites I have had were to my right arm / hand.  Someone was looking out for me.

Anyway, the mel met was confirmed with VATS which removed it, and IL-2 took care of the other.  I have been NED for the past 3 years as a result.

If you have to have a met, the lung is probably the best place to have one.  Regardless, keep kicking its A$$.  Let us know how the CT turns out.

The thing that keeps me from going nuts while waiting for scans and results is to research what to do if it is mel.  For me, by having a back up plan or at least the knowledge to discuss it with my docs helps to give me a sense of controlling something I have no control over.  I call it constructive stressing versus stewing.  I also had a few beers along the way :).

Whishing you the best,

Kim

Sorry to hear.

PET has false positives but if there is increasing SUV uptake over a cut-off threshold then it is more likely than not mel.  SUV uptake greater than 2.5-3.0 is common.  More damning if it continues to increase with the folow up scan taken a few minutes later.  Very active infection or other metabolic activity can do the same, but mel is notorious for glowing like lights on a Christmas tree.  You may have this info on your radiologist report.

I was alarmed when my radiologist used the term "this should represent metastasis", I was hoping he used the word could instead.  Nope, he said should, and it was……THERE ARE ALWAYS EXCEPTIONS though.  The CT will give better info.  Waiting for a few weeks / month or two can determine if there is a tumor doubling time.

You don't always get mel mets via the lymphatics.  I am an example of that.

Stage 2A to IV eight years later.  SNB was negative even with PCR.  Had a back x-ray for other reasons when my lung met was accidently discovered years later.  A follow-up PET/CT also found a muscle met in my pectoralis m.  It was too small to see on most scans but the PET picked it right up.  It was very small.

In the end I am still lucky.  Because mel never visited my lymph nodes, I still have all of them!  (Minus my SNB).  No lymphedema.  I am a vet and my SNB was in my right axilla.  Most of the bites I have had were to my right arm / hand.  Someone was looking out for me.

Anyway, the mel met was confirmed with VATS which removed it, and IL-2 took care of the other.  I have been NED for the past 3 years as a result.

If you have to have a met, the lung is probably the best place to have one.  Regardless, keep kicking its A$$.  Let us know how the CT turns out.

The thing that keeps me from going nuts while waiting for scans and results is to research what to do if it is mel.  For me, by having a back up plan or at least the knowledge to discuss it with my docs helps to give me a sense of controlling something I have no control over.  I call it constructive stressing versus stewing.  I also had a few beers along the way :).

Whishing you the best,

Kim