Lymph Node Positive in Neck, Under Ear… No Primary?

The primary site may never be found.  About 10% of melanoma stems from an unknown primary.   It is thought that there may have been a primary site but it "regressed" – that is, the body attacked the original site and destroyed it but not before cells had escaped and gone elsewhere.  PET scans only identify tumors about 5mm or larger so a PET probably wouldn't find most primary sites.  There is no way to predict spread – either location or speed or anything like that. 

My elderly father had 4 cancers (including melanoma) and his care at the VA was as good as it would have been elsewhere.  Actually, for several treatments/tests, they sent him to the top cancer center in our area.  Not sure what the VA is like in your neck of the woods but our experience was very good.  I realize the VA has had a bad wrap recently but I had to talk them out of treatments/procedures because even though they were standard of care, they were not the best choice for my father.

The primary site may never be found.  About 10% of melanoma stems from an unknown primary.   It is thought that there may have been a primary site but it "regressed" – that is, the body attacked the original site and destroyed it but not before cells had escaped and gone elsewhere.  PET scans only identify tumors about 5mm or larger so a PET probably wouldn't find most primary sites.  There is no way to predict spread – either location or speed or anything like that. 

My elderly father had 4 cancers (including melanoma) and his care at the VA was as good as it would have been elsewhere.  Actually, for several treatments/tests, they sent him to the top cancer center in our area.  Not sure what the VA is like in your neck of the woods but our experience was very good.  I realize the VA has had a bad wrap recently but I had to talk them out of treatments/procedures because even though they were standard of care, they were not the best choice for my father.

The primary site may never be found.  About 10% of melanoma stems from an unknown primary.   It is thought that there may have been a primary site but it "regressed" – that is, the body attacked the original site and destroyed it but not before cells had escaped and gone elsewhere.  PET scans only identify tumors about 5mm or larger so a PET probably wouldn't find most primary sites.  There is no way to predict spread – either location or speed or anything like that. 

My elderly father had 4 cancers (including melanoma) and his care at the VA was as good as it would have been elsewhere.  Actually, for several treatments/tests, they sent him to the top cancer center in our area.  Not sure what the VA is like in your neck of the woods but our experience was very good.  I realize the VA has had a bad wrap recently but I had to talk them out of treatments/procedures because even though they were standard of care, they were not the best choice for my father.

You should get a CT scan to go along with the PET scan. A CT is done to look for tumors and can show the size of them. The PET is used as an indicator of "activity" which looks like a bright light. If there are large enough tumors the PET will have a certain amount of uptake (it soaks up the radioactive sugar that is injected into you before the scan), and based on that and comparing with what it looks like on CT, gives the radiologist a better idea of whether it's something possibly cancerous or not. A PET scan alone isn't as definitive as having both. At least that's what I understand from it all anyway. I get PET/CT combo scans where I get treated. I know that's not standard everywhere, some people only get CT scans and then they get PET scans only if they see something on CT they want to know more about. You should also be getting a brain MRI. These are all standard to get your base read internally in order for doctors to have something to compare and look back on with future scans.

Many people, probably most of us, felt totally normal when we found out we had melanoma. It's a strange thing to feel good and healthy and have something like this going on inside your body. 

Do you have a melanoma specialist?

You should get a CT scan to go along with the PET scan. A CT is done to look for tumors and can show the size of them. The PET is used as an indicator of "activity" which looks like a bright light. If there are large enough tumors the PET will have a certain amount of uptake (it soaks up the radioactive sugar that is injected into you before the scan), and based on that and comparing with what it looks like on CT, gives the radiologist a better idea of whether it's something possibly cancerous or not. A PET scan alone isn't as definitive as having both. At least that's what I understand from it all anyway. I get PET/CT combo scans where I get treated. I know that's not standard everywhere, some people only get CT scans and then they get PET scans only if they see something on CT they want to know more about. You should also be getting a brain MRI. These are all standard to get your base read internally in order for doctors to have something to compare and look back on with future scans.

Many people, probably most of us, felt totally normal when we found out we had melanoma. It's a strange thing to feel good and healthy and have something like this going on inside your body. 

Do you have a melanoma specialist?

You should get a CT scan to go along with the PET scan. A CT is done to look for tumors and can show the size of them. The PET is used as an indicator of "activity" which looks like a bright light. If there are large enough tumors the PET will have a certain amount of uptake (it soaks up the radioactive sugar that is injected into you before the scan), and based on that and comparing with what it looks like on CT, gives the radiologist a better idea of whether it's something possibly cancerous or not. A PET scan alone isn't as definitive as having both. At least that's what I understand from it all anyway. I get PET/CT combo scans where I get treated. I know that's not standard everywhere, some people only get CT scans and then they get PET scans only if they see something on CT they want to know more about. You should also be getting a brain MRI. These are all standard to get your base read internally in order for doctors to have something to compare and look back on with future scans.

Many people, probably most of us, felt totally normal when we found out we had melanoma. It's a strange thing to feel good and healthy and have something like this going on inside your body. 

Do you have a melanoma specialist?

My Dad has never had any doc find a "primary".  They list it as unknown.  He had 15 brain mets, over 20 in the spleen, one in the lung lower bowel and upper thigh.  Absolutely NO symptoms!!!  Scary stuff.  Please make sure you are seeing a Melanoma specialist!!!!

Best to you.

My Dad has never had any doc find a "primary".  They list it as unknown.  He had 15 brain mets, over 20 in the spleen, one in the lung lower bowel and upper thigh.  Absolutely NO symptoms!!!  Scary stuff.  Please make sure you are seeing a Melanoma specialist!!!!

Best to you.

My Dad has never had any doc find a "primary".  They list it as unknown.  He had 15 brain mets, over 20 in the spleen, one in the lung lower bowel and upper thigh.  Absolutely NO symptoms!!!  Scary stuff.  Please make sure you are seeing a Melanoma specialist!!!!

Best to you.

Welcome to the MUP (Melanoma with Unknown Primary) Club. 🙁 While a PET scan is a good thing, it's not 100% accurate all the time. The suggestion to follow up with a CT scan was an excellent one. It should be a CT scan with contrast, which means you get to drink a "delicious" cocktail beforehand.

I'm glad to see to went outside the VA for this. MUP is not all that common and you should be under the care of a facility with a department dedicated to melanoma. If this is not the case with your current provider, please let us know, we can help you seek one out. If you are on Tricare, most places will accept this form of insurance. I'm on Tricare Standard right now and have had no issues with coverage anywhere. 

The primary will never be identified, therefore the sentinel node cannot be positively identified, either. The sentinel node is the first lymph to which the melanoma cells traveled. The most likely scenario is that your body's immune system identified the cancer and attempted to zap it. This actually was a good thing because your immune system recognized it. Unfortunately, before it could complete its job a few cells made their way to a lymph node and set up shop. The main course of treatment for someone with MUP is complete removal of all lymph nodes in the area in which the affected node was found. My affected node was in my left armpit and I had all the lymph nodes in that armpit removed. I'm coming up on 6 years with no evidence of disease. 

Here's a link to some good information on MUPs: 

https://www.utmb.edu/otoref/grnds/melanoma-unk-primary-2012-11-28/melanoma-unk-primary-2012-11.pdf

Welcome to the MUP (Melanoma with Unknown Primary) Club. 🙁 While a PET scan is a good thing, it's not 100% accurate all the time. The suggestion to follow up with a CT scan was an excellent one. It should be a CT scan with contrast, which means you get to drink a "delicious" cocktail beforehand.

I'm glad to see to went outside the VA for this. MUP is not all that common and you should be under the care of a facility with a department dedicated to melanoma. If this is not the case with your current provider, please let us know, we can help you seek one out. If you are on Tricare, most places will accept this form of insurance. I'm on Tricare Standard right now and have had no issues with coverage anywhere. 

The primary will never be identified, therefore the sentinel node cannot be positively identified, either. The sentinel node is the first lymph to which the melanoma cells traveled. The most likely scenario is that your body's immune system identified the cancer and attempted to zap it. This actually was a good thing because your immune system recognized it. Unfortunately, before it could complete its job a few cells made their way to a lymph node and set up shop. The main course of treatment for someone with MUP is complete removal of all lymph nodes in the area in which the affected node was found. My affected node was in my left armpit and I had all the lymph nodes in that armpit removed. I'm coming up on 6 years with no evidence of disease. 

Here's a link to some good information on MUPs: 

https://www.utmb.edu/otoref/grnds/melanoma-unk-primary-2012-11-28/melanoma-unk-primary-2012-11.pdf

Welcome to the MUP (Melanoma with Unknown Primary) Club. 🙁 While a PET scan is a good thing, it's not 100% accurate all the time. The suggestion to follow up with a CT scan was an excellent one. It should be a CT scan with contrast, which means you get to drink a "delicious" cocktail beforehand.

I'm glad to see to went outside the VA for this. MUP is not all that common and you should be under the care of a facility with a department dedicated to melanoma. If this is not the case with your current provider, please let us know, we can help you seek one out. If you are on Tricare, most places will accept this form of insurance. I'm on Tricare Standard right now and have had no issues with coverage anywhere. 

The primary will never be identified, therefore the sentinel node cannot be positively identified, either. The sentinel node is the first lymph to which the melanoma cells traveled. The most likely scenario is that your body's immune system identified the cancer and attempted to zap it. This actually was a good thing because your immune system recognized it. Unfortunately, before it could complete its job a few cells made their way to a lymph node and set up shop. The main course of treatment for someone with MUP is complete removal of all lymph nodes in the area in which the affected node was found. My affected node was in my left armpit and I had all the lymph nodes in that armpit removed. I'm coming up on 6 years with no evidence of disease. 

Here's a link to some good information on MUPs: 

https://www.utmb.edu/otoref/grnds/melanoma-unk-primary-2012-11-28/melanoma-unk-primary-2012-11.pdf