I need to understand the different scans

I'm much less expert than many others on this site, but since responses have been a little thin lately, I'll give it a go until someone else can chime in.

1. From my understanding, once the melanoma has metastisized, a brain MRI is always done since that's a fairly common site for melanoma to spread.

2. That one is trickier. In theory, probably yes, but they don't pick up very small lesions and there are plenty of people who have 'unknown primaries'.

3. He definitely should see a specialist, and I don't think he really even needs a referral from his PCP, though that might be important for insurance reasons. For example, my dad's doctor referred him to a melanoma center and stated that he felt Dad needed specialized care, so we didn't have any insurance issues. Don't know if it was necessary or not, but it worked seamlessly that way for us. Here are a couple links that might direct you to specialists close to him:

http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html

http://melanomainternational.org/web-resources/cancer-centers/#.VMs1qGjF_To

4. I'm not sure of the answer to that one. Certainly, he could ask the general surgeon, though I suspect he/she might tell him to wait, but they save those specimen, so he could have it tested more than once (e.g., by the local oncologist and, later, by a specialist.)

I hope that helps a little. As I said, other people know much more than I, so hopefully they will give you better answers and perhaps even be able to direct you to a doctor in that area. I wish your brother the best; it's a difficult diagnosis to receive.

Elaine

I'm much less expert than many others on this site, but since responses have been a little thin lately, I'll give it a go until someone else can chime in.

1. From my understanding, once the melanoma has metastisized, a brain MRI is always done since that's a fairly common site for melanoma to spread.

2. That one is trickier. In theory, probably yes, but they don't pick up very small lesions and there are plenty of people who have 'unknown primaries'.

3. He definitely should see a specialist, and I don't think he really even needs a referral from his PCP, though that might be important for insurance reasons. For example, my dad's doctor referred him to a melanoma center and stated that he felt Dad needed specialized care, so we didn't have any insurance issues. Don't know if it was necessary or not, but it worked seamlessly that way for us. Here are a couple links that might direct you to specialists close to him:

http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html

http://melanomainternational.org/web-resources/cancer-centers/#.VMs1qGjF_To

4. I'm not sure of the answer to that one. Certainly, he could ask the general surgeon, though I suspect he/she might tell him to wait, but they save those specimen, so he could have it tested more than once (e.g., by the local oncologist and, later, by a specialist.)

I hope that helps a little. As I said, other people know much more than I, so hopefully they will give you better answers and perhaps even be able to direct you to a doctor in that area. I wish your brother the best; it's a difficult diagnosis to receive.

Elaine

I'm much less expert than many others on this site, but since responses have been a little thin lately, I'll give it a go until someone else can chime in.

1. From my understanding, once the melanoma has metastisized, a brain MRI is always done since that's a fairly common site for melanoma to spread.

2. That one is trickier. In theory, probably yes, but they don't pick up very small lesions and there are plenty of people who have 'unknown primaries'.

3. He definitely should see a specialist, and I don't think he really even needs a referral from his PCP, though that might be important for insurance reasons. For example, my dad's doctor referred him to a melanoma center and stated that he felt Dad needed specialized care, so we didn't have any insurance issues. Don't know if it was necessary or not, but it worked seamlessly that way for us. Here are a couple links that might direct you to specialists close to him:

http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html

http://melanomainternational.org/web-resources/cancer-centers/#.VMs1qGjF_To

4. I'm not sure of the answer to that one. Certainly, he could ask the general surgeon, though I suspect he/she might tell him to wait, but they save those specimen, so he could have it tested more than once (e.g., by the local oncologist and, later, by a specialist.)

I hope that helps a little. As I said, other people know much more than I, so hopefully they will give you better answers and perhaps even be able to direct you to a doctor in that area. I wish your brother the best; it's a difficult diagnosis to receive.

Elaine

I'm sorry we all have to "meet" this way, but thank goodness for this board and these people!! I, too, was diagnosed about 2.5 weeks ago, seemingly out of the blue. I had a 4.5cm lump in my right armpit that I thought nothing of for a couple of weeks since there was no pain…now I know that no pain = no good.  Anyway, fast forward through mammogram, ultrasound, core needle biopsy, two rounds of bloodwork where we were all expecting lymphoma and BAM – malignant melanoma in my lymph node(s). I was utterly devastated and have been forced into learning as much as I can about this beast.  I'm scheduled for a complete lymphadenectomy on Feb. 11.

I'm sure that lots of folks with more knowledge than me will reply, but since your brother's situation is very similar to mine I thought I would share my thoughts:

1.) I had an ab/pelvic/chest CT (with and without contrast) initially. It wasn't until I met with the melanoma multi-disciplinary team that a full body PET and a brain MRI were ordered…and I had to sort of fight for the brain MRI. I have no symptoms that would indicate brain involvment and my CT came back negative for disease, so they were not going to do it. For my peace of mind, I need it done. I will have both of those done next Weds., Feb. 4.

2.) I also have an unknown primary. To my knowledge, a CAT and/or PET will not be able to determine primary site. My docs have said that we will probably never know where it started, just that it was somewhere near the right axilla and then regressed after it had mets to the the node. There is a very small chance that there never was primary skin lesion and it simply started in the node. 

3.) I was lucky in the fact that I live 3 miles away from a melanoma multi-disciplinary clinic, so that is where my journey starts. From reading this board as well as others, I think it very important that your brother see a melanoma specilist.

4.) This question is not one that I can answer…someone else will, I'm sure. My gut reaction is to call the oncologist and see how they want to proceed, but I think your first action should be to find a melanoma specialist. They should be able to direct you from there.

My very best wishes go out to your brother and your family.

Cheers – 
Sheila

I'm sorry we all have to "meet" this way, but thank goodness for this board and these people!! I, too, was diagnosed about 2.5 weeks ago, seemingly out of the blue. I had a 4.5cm lump in my right armpit that I thought nothing of for a couple of weeks since there was no pain…now I know that no pain = no good.  Anyway, fast forward through mammogram, ultrasound, core needle biopsy, two rounds of bloodwork where we were all expecting lymphoma and BAM – malignant melanoma in my lymph node(s). I was utterly devastated and have been forced into learning as much as I can about this beast.  I'm scheduled for a complete lymphadenectomy on Feb. 11.

I'm sure that lots of folks with more knowledge than me will reply, but since your brother's situation is very similar to mine I thought I would share my thoughts:

1.) I had an ab/pelvic/chest CT (with and without contrast) initially. It wasn't until I met with the melanoma multi-disciplinary team that a full body PET and a brain MRI were ordered…and I had to sort of fight for the brain MRI. I have no symptoms that would indicate brain involvment and my CT came back negative for disease, so they were not going to do it. For my peace of mind, I need it done. I will have both of those done next Weds., Feb. 4.

2.) I also have an unknown primary. To my knowledge, a CAT and/or PET will not be able to determine primary site. My docs have said that we will probably never know where it started, just that it was somewhere near the right axilla and then regressed after it had mets to the the node. There is a very small chance that there never was primary skin lesion and it simply started in the node. 

3.) I was lucky in the fact that I live 3 miles away from a melanoma multi-disciplinary clinic, so that is where my journey starts. From reading this board as well as others, I think it very important that your brother see a melanoma specilist.

4.) This question is not one that I can answer…someone else will, I'm sure. My gut reaction is to call the oncologist and see how they want to proceed, but I think your first action should be to find a melanoma specialist. They should be able to direct you from there.

My very best wishes go out to your brother and your family.

Cheers – 
Sheila

I'm sorry we all have to "meet" this way, but thank goodness for this board and these people!! I, too, was diagnosed about 2.5 weeks ago, seemingly out of the blue. I had a 4.5cm lump in my right armpit that I thought nothing of for a couple of weeks since there was no pain…now I know that no pain = no good.  Anyway, fast forward through mammogram, ultrasound, core needle biopsy, two rounds of bloodwork where we were all expecting lymphoma and BAM – malignant melanoma in my lymph node(s). I was utterly devastated and have been forced into learning as much as I can about this beast.  I'm scheduled for a complete lymphadenectomy on Feb. 11.

I'm sure that lots of folks with more knowledge than me will reply, but since your brother's situation is very similar to mine I thought I would share my thoughts:

1.) I had an ab/pelvic/chest CT (with and without contrast) initially. It wasn't until I met with the melanoma multi-disciplinary team that a full body PET and a brain MRI were ordered…and I had to sort of fight for the brain MRI. I have no symptoms that would indicate brain involvment and my CT came back negative for disease, so they were not going to do it. For my peace of mind, I need it done. I will have both of those done next Weds., Feb. 4.

2.) I also have an unknown primary. To my knowledge, a CAT and/or PET will not be able to determine primary site. My docs have said that we will probably never know where it started, just that it was somewhere near the right axilla and then regressed after it had mets to the the node. There is a very small chance that there never was primary skin lesion and it simply started in the node. 

3.) I was lucky in the fact that I live 3 miles away from a melanoma multi-disciplinary clinic, so that is where my journey starts. From reading this board as well as others, I think it very important that your brother see a melanoma specilist.

4.) This question is not one that I can answer…someone else will, I'm sure. My gut reaction is to call the oncologist and see how they want to proceed, but I think your first action should be to find a melanoma specialist. They should be able to direct you from there.

My very best wishes go out to your brother and your family.

Cheers – 
Sheila

Hello-

Sorry you had to find us all this way, but there are a lot of good people and a lot of information in this board.  I found it last year when my father in law was diagnosed.  I can only speak to what his experience was and what we learned throughout the process.

1.)  He had "lump" underneath his arm.  He had the mass removed by a general surgeon and that is how we learned he had Melanoma.  He was immediately reffered to a Melanom specialist who ordered the PET scan.  That is when they learned it had spread pretty much every where.  He only had a brain MRI when he started presenting with symptoms that may have indicated the Melanoma had spread to his brain (although it never did).

2.)  His primary was obvious (on his stomach) and he never did anything about it. 

3.)  Cannot stress enough the importance of finding an oncologist who specializes in Melanoma.  I'm not sure what you need to do regarding insurance.  Like I said above, the general surgeon reffered him.  First to a surgical oncologist and then to a medical oncologist.  It is possible to meet with an oncologist who specializes in Melanom and come up with a treatment plan & then have his treatment overseen at an cancer center closer to his home. 

4.)  The general surgeon should send the sample to the Melanoma specialist to be tested for any possible mutation. My father in laws was BRAF positive and it took about 6 weeks for them to send the sample and have it tested. 

The last thing I will add was that you or someone needs to be an advocate for your brothers care.  Write down all your questions, all of the symptoms, find out how to get in touch with the doctor during "off" hours.  My father in laws doctor is awesome, but I would still make everyone write down their questions and I used to have my mother in law write down symptoms with dates and times.

Hello-

Sorry you had to find us all this way, but there are a lot of good people and a lot of information in this board.  I found it last year when my father in law was diagnosed.  I can only speak to what his experience was and what we learned throughout the process.

1.)  He had "lump" underneath his arm.  He had the mass removed by a general surgeon and that is how we learned he had Melanoma.  He was immediately reffered to a Melanom specialist who ordered the PET scan.  That is when they learned it had spread pretty much every where.  He only had a brain MRI when he started presenting with symptoms that may have indicated the Melanoma had spread to his brain (although it never did).

2.)  His primary was obvious (on his stomach) and he never did anything about it. 

3.)  Cannot stress enough the importance of finding an oncologist who specializes in Melanoma.  I'm not sure what you need to do regarding insurance.  Like I said above, the general surgeon reffered him.  First to a surgical oncologist and then to a medical oncologist.  It is possible to meet with an oncologist who specializes in Melanom and come up with a treatment plan & then have his treatment overseen at an cancer center closer to his home. 

4.)  The general surgeon should send the sample to the Melanoma specialist to be tested for any possible mutation. My father in laws was BRAF positive and it took about 6 weeks for them to send the sample and have it tested. 

The last thing I will add was that you or someone needs to be an advocate for your brothers care.  Write down all your questions, all of the symptoms, find out how to get in touch with the doctor during "off" hours.  My father in laws doctor is awesome, but I would still make everyone write down their questions and I used to have my mother in law write down symptoms with dates and times.

Hello-

Sorry you had to find us all this way, but there are a lot of good people and a lot of information in this board.  I found it last year when my father in law was diagnosed.  I can only speak to what his experience was and what we learned throughout the process.

1.)  He had "lump" underneath his arm.  He had the mass removed by a general surgeon and that is how we learned he had Melanoma.  He was immediately reffered to a Melanom specialist who ordered the PET scan.  That is when they learned it had spread pretty much every where.  He only had a brain MRI when he started presenting with symptoms that may have indicated the Melanoma had spread to his brain (although it never did).

2.)  His primary was obvious (on his stomach) and he never did anything about it. 

3.)  Cannot stress enough the importance of finding an oncologist who specializes in Melanoma.  I'm not sure what you need to do regarding insurance.  Like I said above, the general surgeon reffered him.  First to a surgical oncologist and then to a medical oncologist.  It is possible to meet with an oncologist who specializes in Melanom and come up with a treatment plan & then have his treatment overseen at an cancer center closer to his home. 

4.)  The general surgeon should send the sample to the Melanoma specialist to be tested for any possible mutation. My father in laws was BRAF positive and it took about 6 weeks for them to send the sample and have it tested. 

The last thing I will add was that you or someone needs to be an advocate for your brothers care.  Write down all your questions, all of the symptoms, find out how to get in touch with the doctor during "off" hours.  My father in laws doctor is awesome, but I would still make everyone write down their questions and I used to have my mother in law write down symptoms with dates and times.