› Forums › Pediatric & AYA Melanoma Community › 3 Year Old Son, with Atypical Spitz Nevi/Possible Melanoma – Palpable Lymh Nodes
- This topic has 12 replies, 3 voices, and was last updated 10 years, 11 months ago by
Janner.
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- May 18, 2013 at 3:46 pm
Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast – it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago.
Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast – it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago. They sent it to pathology. It has grown to be the same size before shaving it in just three weeks and we see growth daily!
Pathology came back as unclear between atypical spitz nevi and malignant melanoma. I understand it is difficult to tell. They sent it back for further testing.
In the meantime, we were referred to an ENT to do a WLE (Wide Local Excision). We are being told the cut will be about three inches long (on his face) and will leave a good scar – it will go fairly deep too, since they predict that the mole goes deep.
The doctors we are seeing are not specialist with melanoma, and I understand juvenile melanoma is really rare. We live near Portland, OR and about three hours from Seattle, WA. We have family in Michigan and Minnesota and are willing to travel wherever to find the best treatment. Does anyone have any recommendations?
Also, what questions should I be asking the docs? Should they be doing a sentinal node biopsy? What else should I be asking?
There isn't much out there for kids – so any help is really appreciated!
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- May 18, 2013 at 5:48 pm
I would make sure that the pathology is being seen by an expert. I think Dr. Boris Bastian is back at UCSF (you'd need to double check), but I would have his team evaluate the biopsy sample. He has done a bunch of research on Spitz Nevi and if his team cannot tell from the pathology report directly, they can do a genetic test on the sample to narrow down whether or not they think it is melanoma or Spitz. At the very least, I'd call his office for advice. I don't think you need to travel at this point, just make sure the biopsy sample does so it can get a good evaluation. Then depending on the outcome, you can consider a SNB if it is positive for melanoma. Ideally, if they were to do a SNB, it should be done prior to the WLE so I'd want an opinion from Dr. Bastian before that happens if possible. BTW, all WLE's go deep. In general, they take all the tissue down to the muscle fascia. Not sure how that works on the cheek, but scars usually heal well in young kids. There have been a few kids on this site in the past. In addition, Casey Culbertson, MD, a pediatric cardiologist (in CA somewhere) used to be the Melanoma Research Foundation director. He had done some research/surveys with kids with melanoma. He was diagnosed stage III melanoma and hence his interest. But he might also be able to provide some guidance if you were able to contact him. Sorry I don't have numbers but I believe both docs can be googled and you can proceed from there.
Best wishes,
Janner
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- May 18, 2013 at 6:35 pm
The pathology was sent to UCSF Dermtopathology Service and was read by Dr. McCalmont there. Here is a quote:
"I fabor an extreme example of Spitz Nevus as most likely; and my differential diagnois also includes a so-called HRAS-mutated spitz nevus. Because of the hypercellularity of this proliferation and its elevated labeling indes near the junction in your ki-67 immunostain, consideration should be given to the possibility of completing comparative genomic hybridization to screen for chromosonal copy number abnormalities, as can be seen in association with atypical spitzoid tumors or spitzoid melanoma…"
I believe they are doing that test now.
He also says "ther eis a maturation of cytologic and architectural features upond decent of the melanodytes into the dermis. The melonocytes contain relatively abudnant eosinophillic cytoplsm that has ground glass appearance. Cannot rule out spitzoid melanoma with certainty."
So I'm confused. …
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- May 19, 2013 at 2:53 am
Hi
Our 8 year old was first diagnosed with a severely atypical Sptiz nevus, but then the biopsied material was sent out for a FISH assay test, which indicated 80% of the tumor was melanoma. We had a WLE with SLN biospy, which came back positive for melanoma (so we ended up as Stage 3B). Getting to a diagnosis and then treatment plan was a very difficult, confusing time for us (Spring 2012). Currently, our son is two weeks away from completing his year of treatment (interferon). He is seen at St Jude's Children's Research Hospital. You might consider getting a second opinion from the Solid Tumor Clinic there. The procedure is to have your doctor contact St Jude's. They have lots of experience with pediatric melanoma.
Malika
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- May 19, 2013 at 2:53 am
Hi
Our 8 year old was first diagnosed with a severely atypical Sptiz nevus, but then the biopsied material was sent out for a FISH assay test, which indicated 80% of the tumor was melanoma. We had a WLE with SLN biospy, which came back positive for melanoma (so we ended up as Stage 3B). Getting to a diagnosis and then treatment plan was a very difficult, confusing time for us (Spring 2012). Currently, our son is two weeks away from completing his year of treatment (interferon). He is seen at St Jude's Children's Research Hospital. You might consider getting a second opinion from the Solid Tumor Clinic there. The procedure is to have your doctor contact St Jude's. They have lots of experience with pediatric melanoma.
Malika
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- May 19, 2013 at 2:53 am
Hi
Our 8 year old was first diagnosed with a severely atypical Sptiz nevus, but then the biopsied material was sent out for a FISH assay test, which indicated 80% of the tumor was melanoma. We had a WLE with SLN biospy, which came back positive for melanoma (so we ended up as Stage 3B). Getting to a diagnosis and then treatment plan was a very difficult, confusing time for us (Spring 2012). Currently, our son is two weeks away from completing his year of treatment (interferon). He is seen at St Jude's Children's Research Hospital. You might consider getting a second opinion from the Solid Tumor Clinic there. The procedure is to have your doctor contact St Jude's. They have lots of experience with pediatric melanoma.
Malika
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- May 19, 2013 at 3:50 am
I'd let them do their genetic testing and wait for those results. They are not 100% conclusive, but most times they can give you a "spitz" vs "melanoma" diagnosis. You are getting an opinion at the right place. This is such a specialized area of melanoma that the path report is much different than typical melanoma path reports – it's greek to me. But if this were my child, I'd have my slides sent where yours are, and I'd wait for their final diagnosis to determine my next step.
Best wishes,
Janner
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- May 19, 2013 at 3:50 am
I'd let them do their genetic testing and wait for those results. They are not 100% conclusive, but most times they can give you a "spitz" vs "melanoma" diagnosis. You are getting an opinion at the right place. This is such a specialized area of melanoma that the path report is much different than typical melanoma path reports – it's greek to me. But if this were my child, I'd have my slides sent where yours are, and I'd wait for their final diagnosis to determine my next step.
Best wishes,
Janner
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- May 19, 2013 at 3:50 am
I'd let them do their genetic testing and wait for those results. They are not 100% conclusive, but most times they can give you a "spitz" vs "melanoma" diagnosis. You are getting an opinion at the right place. This is such a specialized area of melanoma that the path report is much different than typical melanoma path reports – it's greek to me. But if this were my child, I'd have my slides sent where yours are, and I'd wait for their final diagnosis to determine my next step.
Best wishes,
Janner
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- May 18, 2013 at 6:35 pm
The pathology was sent to UCSF Dermtopathology Service and was read by Dr. McCalmont there. Here is a quote:
"I fabor an extreme example of Spitz Nevus as most likely; and my differential diagnois also includes a so-called HRAS-mutated spitz nevus. Because of the hypercellularity of this proliferation and its elevated labeling indes near the junction in your ki-67 immunostain, consideration should be given to the possibility of completing comparative genomic hybridization to screen for chromosonal copy number abnormalities, as can be seen in association with atypical spitzoid tumors or spitzoid melanoma…"
I believe they are doing that test now.
He also says "ther eis a maturation of cytologic and architectural features upond decent of the melanodytes into the dermis. The melonocytes contain relatively abudnant eosinophillic cytoplsm that has ground glass appearance. Cannot rule out spitzoid melanoma with certainty."
So I'm confused. …
-
- May 18, 2013 at 6:35 pm
The pathology was sent to UCSF Dermtopathology Service and was read by Dr. McCalmont there. Here is a quote:
"I fabor an extreme example of Spitz Nevus as most likely; and my differential diagnois also includes a so-called HRAS-mutated spitz nevus. Because of the hypercellularity of this proliferation and its elevated labeling indes near the junction in your ki-67 immunostain, consideration should be given to the possibility of completing comparative genomic hybridization to screen for chromosonal copy number abnormalities, as can be seen in association with atypical spitzoid tumors or spitzoid melanoma…"
I believe they are doing that test now.
He also says "ther eis a maturation of cytologic and architectural features upond decent of the melanodytes into the dermis. The melonocytes contain relatively abudnant eosinophillic cytoplsm that has ground glass appearance. Cannot rule out spitzoid melanoma with certainty."
So I'm confused. …
-
- May 18, 2013 at 5:48 pm
I would make sure that the pathology is being seen by an expert. I think Dr. Boris Bastian is back at UCSF (you'd need to double check), but I would have his team evaluate the biopsy sample. He has done a bunch of research on Spitz Nevi and if his team cannot tell from the pathology report directly, they can do a genetic test on the sample to narrow down whether or not they think it is melanoma or Spitz. At the very least, I'd call his office for advice. I don't think you need to travel at this point, just make sure the biopsy sample does so it can get a good evaluation. Then depending on the outcome, you can consider a SNB if it is positive for melanoma. Ideally, if they were to do a SNB, it should be done prior to the WLE so I'd want an opinion from Dr. Bastian before that happens if possible. BTW, all WLE's go deep. In general, they take all the tissue down to the muscle fascia. Not sure how that works on the cheek, but scars usually heal well in young kids. There have been a few kids on this site in the past. In addition, Casey Culbertson, MD, a pediatric cardiologist (in CA somewhere) used to be the Melanoma Research Foundation director. He had done some research/surveys with kids with melanoma. He was diagnosed stage III melanoma and hence his interest. But he might also be able to provide some guidance if you were able to contact him. Sorry I don't have numbers but I believe both docs can be googled and you can proceed from there.
Best wishes,
Janner
-
- May 18, 2013 at 5:48 pm
I would make sure that the pathology is being seen by an expert. I think Dr. Boris Bastian is back at UCSF (you'd need to double check), but I would have his team evaluate the biopsy sample. He has done a bunch of research on Spitz Nevi and if his team cannot tell from the pathology report directly, they can do a genetic test on the sample to narrow down whether or not they think it is melanoma or Spitz. At the very least, I'd call his office for advice. I don't think you need to travel at this point, just make sure the biopsy sample does so it can get a good evaluation. Then depending on the outcome, you can consider a SNB if it is positive for melanoma. Ideally, if they were to do a SNB, it should be done prior to the WLE so I'd want an opinion from Dr. Bastian before that happens if possible. BTW, all WLE's go deep. In general, they take all the tissue down to the muscle fascia. Not sure how that works on the cheek, but scars usually heal well in young kids. There have been a few kids on this site in the past. In addition, Casey Culbertson, MD, a pediatric cardiologist (in CA somewhere) used to be the Melanoma Research Foundation director. He had done some research/surveys with kids with melanoma. He was diagnosed stage III melanoma and hence his interest. But he might also be able to provide some guidance if you were able to contact him. Sorry I don't have numbers but I believe both docs can be googled and you can proceed from there.
Best wishes,
Janner
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Tagged: cutaneous melanoma, pediatric melanoma
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