Atypical Spitzoid Neoplasm in a 5 year old

Spitz nevi are found in children and are benign.  However, Spitz nevi look almost identical to melanoma under a microscope.  You need to have the pathology read by someone who really understands Spitz nevi.  I'm no longer sure where Dr. Boris Bastian practices – he was at UCSF then he moved back east but I had heard he might be back west again.  Anyway, one of his areas of research is Spitz nevi.  He and his team can review the slides.  If his team have any question about the pathology, they have developed a DNA test they can run that can be more specific in determining the pathology.  Basically, the DNA testing would show lots of DNA errors if it is melanoma, and few if it were a normal Spitz nevi.  There may be other pathologists who can read Spitz nevi, but I know this is a specialty of Dr. Bastian's and I would personally want his opinion if this was my child.  In general, because your son is so young, a Spitz nevi would be the most likely choice.  When you get a person in their late teens or twenties, this is where things become more iffy because Spitz nevi are rarely found in adults.

Best wishes,

Janner

Spitz nevi are found in children and are benign.  However, Spitz nevi look almost identical to melanoma under a microscope.  You need to have the pathology read by someone who really understands Spitz nevi.  I'm no longer sure where Dr. Boris Bastian practices – he was at UCSF then he moved back east but I had heard he might be back west again.  Anyway, one of his areas of research is Spitz nevi.  He and his team can review the slides.  If his team have any question about the pathology, they have developed a DNA test they can run that can be more specific in determining the pathology.  Basically, the DNA testing would show lots of DNA errors if it is melanoma, and few if it were a normal Spitz nevi.  There may be other pathologists who can read Spitz nevi, but I know this is a specialty of Dr. Bastian's and I would personally want his opinion if this was my child.  In general, because your son is so young, a Spitz nevi would be the most likely choice.  When you get a person in their late teens or twenties, this is where things become more iffy because Spitz nevi are rarely found in adults.

Best wishes,

Janner

Spitz nevi are found in children and are benign.  However, Spitz nevi look almost identical to melanoma under a microscope.  You need to have the pathology read by someone who really understands Spitz nevi.  I'm no longer sure where Dr. Boris Bastian practices – he was at UCSF then he moved back east but I had heard he might be back west again.  Anyway, one of his areas of research is Spitz nevi.  He and his team can review the slides.  If his team have any question about the pathology, they have developed a DNA test they can run that can be more specific in determining the pathology.  Basically, the DNA testing would show lots of DNA errors if it is melanoma, and few if it were a normal Spitz nevi.  There may be other pathologists who can read Spitz nevi, but I know this is a specialty of Dr. Bastian's and I would personally want his opinion if this was my child.  In general, because your son is so young, a Spitz nevi would be the most likely choice.  When you get a person in their late teens or twenties, this is where things become more iffy because Spitz nevi are rarely found in adults.

Best wishes,

Janner

Hi.

Our 8 year old was diagnosed with a severely atypical spitz nevus last Valentines day, later determined via FISH analysis to be melanoma.  One of our first stops was at Sloan Kettering, where we met with the pediatric oncology team, not the melanoma team.   The team dismissed the FISH results and stated that there was a "99.9% chance" the initial wide local excision (WLE) and sentinel lymph node biopsy (SLNB), both done 3/9/12, were curative. They were not willing to answer my questions.  Further, they do not treat Stage 3 melanoma but offered that they could "probably" get our son treatment on compassionate grounds if our son's disease progressed to Stage 4.   I was not willing to "wait and see" with the pathology results we had on an 8 year old child.   We ended up at St Jude's Children's Research Hospital, had the complete lymph node dissection, and more melanoma was found.  We are now on interferon, doing well. I think the clinic trial at St Jude is now closed but they may be willing to give a second opinion.

I recommend asking to have a FISH assay test done; our initial pathologists requested this after the shave biospy.  It is used to distinguish between spitz nevi and melanoma, which can be difficult to do visually.   According to the developers, it does not give false positives – so that if it finds melanoma, then it is melanoma.   But it can give false negatives – if it fails to find melanoma, melanoma may or may not be present.  It was the FISH results that clarified for us whether our son's mole was a bengin Spitzoid nevus or a malignant melanoma.  It is really really rare to have a melanoma in a child under 10 (something like 100 cases a year).  Hopefully your son just has an atypical Spitzoid, in which case you want to be sure he is monitored by a determatologist regulary.  

My best advice is to keep asking questions until you can live with the answers.  It took 6 hospitals until we found one that had the willingness and expertise to treat our son.  

Good luck.

Hi.

Our 8 year old was diagnosed with a severely atypical spitz nevus last Valentines day, later determined via FISH analysis to be melanoma.  One of our first stops was at Sloan Kettering, where we met with the pediatric oncology team, not the melanoma team.   The team dismissed the FISH results and stated that there was a "99.9% chance" the initial wide local excision (WLE) and sentinel lymph node biopsy (SLNB), both done 3/9/12, were curative. They were not willing to answer my questions.  Further, they do not treat Stage 3 melanoma but offered that they could "probably" get our son treatment on compassionate grounds if our son's disease progressed to Stage 4.   I was not willing to "wait and see" with the pathology results we had on an 8 year old child.   We ended up at St Jude's Children's Research Hospital, had the complete lymph node dissection, and more melanoma was found.  We are now on interferon, doing well. I think the clinic trial at St Jude is now closed but they may be willing to give a second opinion.

I recommend asking to have a FISH assay test done; our initial pathologists requested this after the shave biospy.  It is used to distinguish between spitz nevi and melanoma, which can be difficult to do visually.   According to the developers, it does not give false positives – so that if it finds melanoma, then it is melanoma.   But it can give false negatives – if it fails to find melanoma, melanoma may or may not be present.  It was the FISH results that clarified for us whether our son's mole was a bengin Spitzoid nevus or a malignant melanoma.  It is really really rare to have a melanoma in a child under 10 (something like 100 cases a year).  Hopefully your son just has an atypical Spitzoid, in which case you want to be sure he is monitored by a determatologist regulary.  

My best advice is to keep asking questions until you can live with the answers.  It took 6 hospitals until we found one that had the willingness and expertise to treat our son.  

Good luck.

Hi.

Our 8 year old was diagnosed with a severely atypical spitz nevus last Valentines day, later determined via FISH analysis to be melanoma.  One of our first stops was at Sloan Kettering, where we met with the pediatric oncology team, not the melanoma team.   The team dismissed the FISH results and stated that there was a "99.9% chance" the initial wide local excision (WLE) and sentinel lymph node biopsy (SLNB), both done 3/9/12, were curative. They were not willing to answer my questions.  Further, they do not treat Stage 3 melanoma but offered that they could "probably" get our son treatment on compassionate grounds if our son's disease progressed to Stage 4.   I was not willing to "wait and see" with the pathology results we had on an 8 year old child.   We ended up at St Jude's Children's Research Hospital, had the complete lymph node dissection, and more melanoma was found.  We are now on interferon, doing well. I think the clinic trial at St Jude is now closed but they may be willing to give a second opinion.

I recommend asking to have a FISH assay test done; our initial pathologists requested this after the shave biospy.  It is used to distinguish between spitz nevi and melanoma, which can be difficult to do visually.   According to the developers, it does not give false positives – so that if it finds melanoma, then it is melanoma.   But it can give false negatives – if it fails to find melanoma, melanoma may or may not be present.  It was the FISH results that clarified for us whether our son's mole was a bengin Spitzoid nevus or a malignant melanoma.  It is really really rare to have a melanoma in a child under 10 (something like 100 cases a year).  Hopefully your son just has an atypical Spitzoid, in which case you want to be sure he is monitored by a determatologist regulary.  

My best advice is to keep asking questions until you can live with the answers.  It took 6 hospitals until we found one that had the willingness and expertise to treat our son.  

Good luck.

that's crazy, that's ridiculous. . I thought they are supposed to be a world class center of excellence, and they lose slides?

that's crazy, that's ridiculous. . I thought they are supposed to be a world class center of excellence, and they lose slides?

that's crazy, that's ridiculous. . I thought they are supposed to be a world class center of excellence, and they lose slides?

Hi 

UPenn "lost" our slides too – I called the director of pathology and they were found ASAP.  Don't be afraid to make a few waves.   My experience is that Sloan Kettering is going to tell you not to worry, regardless of what your path report says.  Even though the Sloan Kettering Melanoma Clinic has experts, including Dr Bastin (sp?), he may not review the slides because your son is so young.  We found that major melanoma clinics are unwilling to look at prepubescent kids because the anatomy is different than in adults. My advice is to have your doctor contact the Solid Tumor Clinic at St Jude's. (go to the St Jude website)  This may be more straightforward than requesting the FISH test I recommended earlier.  Parents don''t contact the hospital directly but rather everything goes through the referring physician.  

Our son's pathology report indicated Clark depth IV, ulcerated, and a mitosis rate of 13 mm^2.  80% of the cells in the original tumor were melanoma.  At the time we went to Sloan Kettering, microscopic melanoma had been found in his groin (primary location was shin).   It doesn't seem like you have that level of detail yet in your current report, which is leaning more towards a Spitzoid nevus.  His mole appeared as a small dark pimple in August 2011, like your son's.  In 8 months it went from non-existence to Stage 3B melanoma.  On Nov 1, 2011 our pediatrician told us not to worry and that he'd get us the first derm. appt he could.  I feel that we lost a lot of ground waiting from Nov 1, 2012 to Feb 12, 2012. 

I know this is very confusing.  It is even confusing for the experts, let alone for us parents trying to find out info for our kids.   I have also been very pro-active about having every mole on my son mapped and measured.  Four additional mole have been removed and thankfully none have been melanoma.

Hang in there…

Hi 

UPenn "lost" our slides too – I called the director of pathology and they were found ASAP.  Don't be afraid to make a few waves.   My experience is that Sloan Kettering is going to tell you not to worry, regardless of what your path report says.  Even though the Sloan Kettering Melanoma Clinic has experts, including Dr Bastin (sp?), he may not review the slides because your son is so young.  We found that major melanoma clinics are unwilling to look at prepubescent kids because the anatomy is different than in adults. My advice is to have your doctor contact the Solid Tumor Clinic at St Jude's. (go to the St Jude website)  This may be more straightforward than requesting the FISH test I recommended earlier.  Parents don''t contact the hospital directly but rather everything goes through the referring physician.  

Our son's pathology report indicated Clark depth IV, ulcerated, and a mitosis rate of 13 mm^2.  80% of the cells in the original tumor were melanoma.  At the time we went to Sloan Kettering, microscopic melanoma had been found in his groin (primary location was shin).   It doesn't seem like you have that level of detail yet in your current report, which is leaning more towards a Spitzoid nevus.  His mole appeared as a small dark pimple in August 2011, like your son's.  In 8 months it went from non-existence to Stage 3B melanoma.  On Nov 1, 2011 our pediatrician told us not to worry and that he'd get us the first derm. appt he could.  I feel that we lost a lot of ground waiting from Nov 1, 2012 to Feb 12, 2012. 

I know this is very confusing.  It is even confusing for the experts, let alone for us parents trying to find out info for our kids.   I have also been very pro-active about having every mole on my son mapped and measured.  Four additional mole have been removed and thankfully none have been melanoma.

Hang in there…

Hi 

UPenn "lost" our slides too – I called the director of pathology and they were found ASAP.  Don't be afraid to make a few waves.   My experience is that Sloan Kettering is going to tell you not to worry, regardless of what your path report says.  Even though the Sloan Kettering Melanoma Clinic has experts, including Dr Bastin (sp?), he may not review the slides because your son is so young.  We found that major melanoma clinics are unwilling to look at prepubescent kids because the anatomy is different than in adults. My advice is to have your doctor contact the Solid Tumor Clinic at St Jude's. (go to the St Jude website)  This may be more straightforward than requesting the FISH test I recommended earlier.  Parents don''t contact the hospital directly but rather everything goes through the referring physician.  

Our son's pathology report indicated Clark depth IV, ulcerated, and a mitosis rate of 13 mm^2.  80% of the cells in the original tumor were melanoma.  At the time we went to Sloan Kettering, microscopic melanoma had been found in his groin (primary location was shin).   It doesn't seem like you have that level of detail yet in your current report, which is leaning more towards a Spitzoid nevus.  His mole appeared as a small dark pimple in August 2011, like your son's.  In 8 months it went from non-existence to Stage 3B melanoma.  On Nov 1, 2011 our pediatrician told us not to worry and that he'd get us the first derm. appt he could.  I feel that we lost a lot of ground waiting from Nov 1, 2012 to Feb 12, 2012. 

I know this is very confusing.  It is even confusing for the experts, let alone for us parents trying to find out info for our kids.   I have also been very pro-active about having every mole on my son mapped and measured.  Four additional mole have been removed and thankfully none have been melanoma.

Hang in there…

Hello,  My daughter Ella had a spitz nevus removed when she was 3 (3 years ago).  (She also had a large dysplastic nevus removed shortly after) This was quite frightning for me, as her dad passed away from melanoma about a year prior to that.  Some of the stories on here can be so scary, so I just want to let you know that my daughters stayed the same dignose of spitz nevus where as I had it stuck in my head unfortunately that they would find out it was melanoma.  There is a good chance that that is all it is!  With that said, It is still wise to keep a very close eye on this matter and follow up appointments are very important!   Be your son's advocate!  He cannot speak for himself and he is not his doctors only patient!  Ask tons of questions, keep all medical records, and research (as it appears you already are!)!  During my husbands battle with melanoma, I learned I had to "be the boss".  If you want answers, you have to ask questions!   Please feel free to get a hold of me anytime if you have any more questions, (not sure I worded this post very well!)  although it has been quite some time since I have been on MPIP, melanoma will forever be stuck in my mind!   Good luck!!

Nicole

p.s. .. my daughters spitz nevus was exactly how you described your sons! Except hers was on her back..It was initially thought to be a wart..

Hello,  My daughter Ella had a spitz nevus removed when she was 3 (3 years ago).  (She also had a large dysplastic nevus removed shortly after) This was quite frightning for me, as her dad passed away from melanoma about a year prior to that.  Some of the stories on here can be so scary, so I just want to let you know that my daughters stayed the same dignose of spitz nevus where as I had it stuck in my head unfortunately that they would find out it was melanoma.  There is a good chance that that is all it is!  With that said, It is still wise to keep a very close eye on this matter and follow up appointments are very important!   Be your son's advocate!  He cannot speak for himself and he is not his doctors only patient!  Ask tons of questions, keep all medical records, and research (as it appears you already are!)!  During my husbands battle with melanoma, I learned I had to "be the boss".  If you want answers, you have to ask questions!   Please feel free to get a hold of me anytime if you have any more questions, (not sure I worded this post very well!)  although it has been quite some time since I have been on MPIP, melanoma will forever be stuck in my mind!   Good luck!!

Nicole

p.s. .. my daughters spitz nevus was exactly how you described your sons! Except hers was on her back..It was initially thought to be a wart..

Hello,  My daughter Ella had a spitz nevus removed when she was 3 (3 years ago).  (She also had a large dysplastic nevus removed shortly after) This was quite frightning for me, as her dad passed away from melanoma about a year prior to that.  Some of the stories on here can be so scary, so I just want to let you know that my daughters stayed the same dignose of spitz nevus where as I had it stuck in my head unfortunately that they would find out it was melanoma.  There is a good chance that that is all it is!  With that said, It is still wise to keep a very close eye on this matter and follow up appointments are very important!   Be your son's advocate!  He cannot speak for himself and he is not his doctors only patient!  Ask tons of questions, keep all medical records, and research (as it appears you already are!)!  During my husbands battle with melanoma, I learned I had to "be the boss".  If you want answers, you have to ask questions!   Please feel free to get a hold of me anytime if you have any more questions, (not sure I worded this post very well!)  although it has been quite some time since I have been on MPIP, melanoma will forever be stuck in my mind!   Good luck!!

Nicole

p.s. .. my daughters spitz nevus was exactly how you described your sons! Except hers was on her back..It was initially thought to be a wart..

I actually just joined the board when I saw this topic! My 3 year old son had a spot exactly like you described – started out like a pimple, then had the cauliflower look to it, but then his became dome-shaped and lost the cauliflower look. His pediatrician thought it was a wart and gave us cream to put on it 3x/week. After a month it wasn't doing anything so I took him back to the pediatrician and he gave us a referal to a dermatologist. The dermatologist gave him a shot of lidocaine, sliced it off and assured us it was "never anything in kids this age" but sent it to pathology anyway. A week later, the pathology came back as "either atypical compound spitz nevus or melanoma" – they've sent it to MD Anderson for further review.

I'm terrified! Everything I'm reading says that melanoma can be misdiagnosed as atypical spitz, and I'm so scared that we're going to under-treat something major. At the same time, I don't want to go overboard the other direction and treat him for something he doesn't have, you know? We're still waiting to hear back from MD Anderson, they told me on Tuesday they had to order more materials for further study on it. So far the only thing we know is that they're going to do surgery to make sure they have all of it gone. I've read online that sometimes a sentinel lymph node biopsy is performed, but I have no idea if they'll do that or not. Trying not to worry is hard!

I actually just joined the board when I saw this topic! My 3 year old son had a spot exactly like you described – started out like a pimple, then had the cauliflower look to it, but then his became dome-shaped and lost the cauliflower look. His pediatrician thought it was a wart and gave us cream to put on it 3x/week. After a month it wasn't doing anything so I took him back to the pediatrician and he gave us a referal to a dermatologist. The dermatologist gave him a shot of lidocaine, sliced it off and assured us it was "never anything in kids this age" but sent it to pathology anyway. A week later, the pathology came back as "either atypical compound spitz nevus or melanoma" – they've sent it to MD Anderson for further review.

I'm terrified! Everything I'm reading says that melanoma can be misdiagnosed as atypical spitz, and I'm so scared that we're going to under-treat something major. At the same time, I don't want to go overboard the other direction and treat him for something he doesn't have, you know? We're still waiting to hear back from MD Anderson, they told me on Tuesday they had to order more materials for further study on it. So far the only thing we know is that they're going to do surgery to make sure they have all of it gone. I've read online that sometimes a sentinel lymph node biopsy is performed, but I have no idea if they'll do that or not. Trying not to worry is hard!

I actually just joined the board when I saw this topic! My 3 year old son had a spot exactly like you described – started out like a pimple, then had the cauliflower look to it, but then his became dome-shaped and lost the cauliflower look. His pediatrician thought it was a wart and gave us cream to put on it 3x/week. After a month it wasn't doing anything so I took him back to the pediatrician and he gave us a referal to a dermatologist. The dermatologist gave him a shot of lidocaine, sliced it off and assured us it was "never anything in kids this age" but sent it to pathology anyway. A week later, the pathology came back as "either atypical compound spitz nevus or melanoma" – they've sent it to MD Anderson for further review.

I'm terrified! Everything I'm reading says that melanoma can be misdiagnosed as atypical spitz, and I'm so scared that we're going to under-treat something major. At the same time, I don't want to go overboard the other direction and treat him for something he doesn't have, you know? We're still waiting to hear back from MD Anderson, they told me on Tuesday they had to order more materials for further study on it. So far the only thing we know is that they're going to do surgery to make sure they have all of it gone. I've read online that sometimes a sentinel lymph node biopsy is performed, but I have no idea if they'll do that or not. Trying not to worry is hard!

Just to share my experience: My 6 year old daughter had a mole biopsied on her scalp last year and the result was also spitz nevus.  Dr. Hideko Kamino of NYU dermatopathology did the test (she also diagnosed my melanoma several years ago and is one of the lead authors of the group that discovered “Kamino Bodies”).  In the report, she indicated that there are focal feature of a dysplastic nevus and recommended a conservative removal if the lesion persists or recurs.  We didn’t want to take any chance and removed the section via a punch biopsy which cleared the area.  

Just to share my experience: My 6 year old daughter had a mole biopsied on her scalp last year and the result was also spitz nevus.  Dr. Hideko Kamino of NYU dermatopathology did the test (she also diagnosed my melanoma several years ago and is one of the lead authors of the group that discovered “Kamino Bodies”).  In the report, she indicated that there are focal feature of a dysplastic nevus and recommended a conservative removal if the lesion persists or recurs.  We didn’t want to take any chance and removed the section via a punch biopsy which cleared the area.  

Just to share my experience: My 6 year old daughter had a mole biopsied on her scalp last year and the result was also spitz nevus.  Dr. Hideko Kamino of NYU dermatopathology did the test (she also diagnosed my melanoma several years ago and is one of the lead authors of the group that discovered “Kamino Bodies”).  In the report, she indicated that there are focal feature of a dysplastic nevus and recommended a conservative removal if the lesion persists or recurs.  We didn’t want to take any chance and removed the section via a punch biopsy which cleared the area.  

Just to share my experience: My 6 year old daughter had a mole biopsied on her scalp last year and the result was also spitz nevus.  Dr. Hideko Kamino of NYU dermatopathology did the test (she also diagnosed my melanoma several years ago and is one of the lead authors of the group that discovered “Kamino Bodies”).  In the report, she indicated that there are focal feature of a dysplastic nevus and recommended a conservative removal if the lesion persists or recurs.  We didn’t want to take any chance and removed the section via a punch biopsy which cleared the area.  

Just to share my experience: My 6 year old daughter had a mole biopsied on her scalp last year and the result was also spitz nevus.  Dr. Hideko Kamino of NYU dermatopathology did the test (she also diagnosed my melanoma several years ago and is one of the lead authors of the group that discovered “Kamino Bodies”).  In the report, she indicated that there are focal feature of a dysplastic nevus and recommended a conservative removal if the lesion persists or recurs.  We didn’t want to take any chance and removed the section via a punch biopsy which cleared the area.  

Just to share my experience: My 6 year old daughter had a mole biopsied on her scalp last year and the result was also spitz nevus.  Dr. Hideko Kamino of NYU dermatopathology did the test (she also diagnosed my melanoma several years ago and is one of the lead authors of the group that discovered “Kamino Bodies”).  In the report, she indicated that there are focal feature of a dysplastic nevus and recommended a conservative removal if the lesion persists or recurs.  We didn’t want to take any chance and removed the section via a punch biopsy which cleared the area.