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We received the results from the FISH test, with 85% accuracy, negative for melanoma.  However, they noted that due to the limitations in the sensitivity of the test, a negative result is not entirely definitive.  Well, that doesn't make me feel good!

So, they have now decided to cut 5 additional slides and have them sent to a Dr. Boris Bastian at University California San Francisco for a test called comparative genomic hybridization.  I do not know anything about this test, except that it takes 28 days to receive results!

As a side note, we requested that Sloan Kettering send my sons slides back to Childrens Hospital Pittsburgh after the fish test as this is the hospital he will eventually have the remaining tissue removed.  Sloan Kettering informed me last night that the FISH test renders the slides useless.  Apparently they scrape all of the tissue from the slides and mix it with some kind of a stain to preform the test.  Just wanted to mention that to you incase your Dr. had plans for additional testing following the FISH test.

Please keep me updated on your sons progress.

We received the results from the FISH test, with 85% accuracy, negative for melanoma.  However, they noted that due to the limitations in the sensitivity of the test, a negative result is not entirely definitive.  Well, that doesn't make me feel good!

So, they have now decided to cut 5 additional slides and have them sent to a Dr. Boris Bastian at University California San Francisco for a test called comparative genomic hybridization.  I do not know anything about this test, except that it takes 28 days to receive results!

As a side note, we requested that Sloan Kettering send my sons slides back to Childrens Hospital Pittsburgh after the fish test as this is the hospital he will eventually have the remaining tissue removed.  Sloan Kettering informed me last night that the FISH test renders the slides useless.  Apparently they scrape all of the tissue from the slides and mix it with some kind of a stain to preform the test.  Just wanted to mention that to you incase your Dr. had plans for additional testing following the FISH test.

Please keep me updated on your sons progress.

We received the results from the FISH test, with 85% accuracy, negative for melanoma.  However, they noted that due to the limitations in the sensitivity of the test, a negative result is not entirely definitive.  Well, that doesn't make me feel good!

So, they have now decided to cut 5 additional slides and have them sent to a Dr. Boris Bastian at University California San Francisco for a test called comparative genomic hybridization.  I do not know anything about this test, except that it takes 28 days to receive results!

As a side note, we requested that Sloan Kettering send my sons slides back to Childrens Hospital Pittsburgh after the fish test as this is the hospital he will eventually have the remaining tissue removed.  Sloan Kettering informed me last night that the FISH test renders the slides useless.  Apparently they scrape all of the tissue from the slides and mix it with some kind of a stain to preform the test.  Just wanted to mention that to you incase your Dr. had plans for additional testing following the FISH test.

Please keep me updated on your sons progress.

Hi Steph –

I was thinking of you this morning, any news?

Hi Steph –

I was thinking of you this morning, any news?

Hi Steph –

I was thinking of you this morning, any news?

Call your dermatologists' office and ask them to fax you a copy of the original pathology report.  That's what I did and I have literally googled every word in the report!  From what I have read on this site, it's a good idea to get your hands on as many reports and results as possible.  They are after all "our" records!

My sons mole is on his chin.  We met with a plastic surgeon at Children's Hospital in Pittsburgh and he will be the one performing the surgery since the scar will be on his chin.  He told my husband and I that the pathology report from Sloan Kettering Cancer Center in New York will tell him how much tissue he needs to take in order to achieve clear margins.  He explained to us that he has rarely seen a recommendation of greater than 5mm. That will lead to a scar in the 1/2" range.  He is leaning toward taking a lymph node, which would be a separate scar most likely under his jawbone, due to the location of his mole.

It's a lot to take in and I am also assuming the worst…..why do we do that?

Call your dermatologists' office and ask them to fax you a copy of the original pathology report.  That's what I did and I have literally googled every word in the report!  From what I have read on this site, it's a good idea to get your hands on as many reports and results as possible.  They are after all "our" records!

My sons mole is on his chin.  We met with a plastic surgeon at Children's Hospital in Pittsburgh and he will be the one performing the surgery since the scar will be on his chin.  He told my husband and I that the pathology report from Sloan Kettering Cancer Center in New York will tell him how much tissue he needs to take in order to achieve clear margins.  He explained to us that he has rarely seen a recommendation of greater than 5mm. That will lead to a scar in the 1/2" range.  He is leaning toward taking a lymph node, which would be a separate scar most likely under his jawbone, due to the location of his mole.

It's a lot to take in and I am also assuming the worst…..why do we do that?

Call your dermatologists' office and ask them to fax you a copy of the original pathology report.  That's what I did and I have literally googled every word in the report!  From what I have read on this site, it's a good idea to get your hands on as many reports and results as possible.  They are after all "our" records!

My sons mole is on his chin.  We met with a plastic surgeon at Children's Hospital in Pittsburgh and he will be the one performing the surgery since the scar will be on his chin.  He told my husband and I that the pathology report from Sloan Kettering Cancer Center in New York will tell him how much tissue he needs to take in order to achieve clear margins.  He explained to us that he has rarely seen a recommendation of greater than 5mm. That will lead to a scar in the 1/2" range.  He is leaning toward taking a lymph node, which would be a separate scar most likely under his jawbone, due to the location of his mole.

It's a lot to take in and I am also assuming the worst…..why do we do that?

Hi Steph –

I know EXACTLY what you are going thru right now!

We are also playing the waiting game right now.  Sloan Kettering lost my sons slides that were sent to them for an expert opinion.  Luckily, the slides were able to be duplicated and Sloan Kettering has them in their possession as I type.  They have already notified me today that they will have a preliminary report later this afternoon but due to the complexity of this particular case, they are performing additional testing, which could take up to 10 days.  It's some type of a DNA test called FISH.

My son is also having surgery after we receive all of the pathology results.  My sons doctor did mention the lymph node biopsy as well but we wont know for sure until all the tests are completed.

We have been dealing with this since December 4th and I feel like we are getting nowhere……ugh, I hate waiting!

All the best,

Stacy

Hi Steph –

I know EXACTLY what you are going thru right now!

We are also playing the waiting game right now.  Sloan Kettering lost my sons slides that were sent to them for an expert opinion.  Luckily, the slides were able to be duplicated and Sloan Kettering has them in their possession as I type.  They have already notified me today that they will have a preliminary report later this afternoon but due to the complexity of this particular case, they are performing additional testing, which could take up to 10 days.  It's some type of a DNA test called FISH.

My son is also having surgery after we receive all of the pathology results.  My sons doctor did mention the lymph node biopsy as well but we wont know for sure until all the tests are completed.

We have been dealing with this since December 4th and I feel like we are getting nowhere……ugh, I hate waiting!

All the best,

Stacy

Hi Steph –

I know EXACTLY what you are going thru right now!

We are also playing the waiting game right now.  Sloan Kettering lost my sons slides that were sent to them for an expert opinion.  Luckily, the slides were able to be duplicated and Sloan Kettering has them in their possession as I type.  They have already notified me today that they will have a preliminary report later this afternoon but due to the complexity of this particular case, they are performing additional testing, which could take up to 10 days.  It's some type of a DNA test called FISH.

My son is also having surgery after we receive all of the pathology results.  My sons doctor did mention the lymph node biopsy as well but we wont know for sure until all the tests are completed.

We have been dealing with this since December 4th and I feel like we are getting nowhere……ugh, I hate waiting!

All the best,

Stacy

Nicole, your story brings me much comfort and I thank you for that 🙂

I am refusing to accept the answer that my sons slides are lost.  I call the patient advocacy group at Sloan Kettering yesterday afternoon.  I almost immediately received a call from the Pathology Department Administrator regarding the missing slides.  He told me that he was working diligently to find the slides and trying to get duplicate slides from the lab in Pittsburgh.  He assured me that this would be handled appropriately and immediately.  So we will see.

I have been researching every web-site out there regarding these Spitz tumors in children.  The information is definitely scary. 

Hoping for the best!

Nicole, your story brings me much comfort and I thank you for that 🙂

I am refusing to accept the answer that my sons slides are lost.  I call the patient advocacy group at Sloan Kettering yesterday afternoon.  I almost immediately received a call from the Pathology Department Administrator regarding the missing slides.  He told me that he was working diligently to find the slides and trying to get duplicate slides from the lab in Pittsburgh.  He assured me that this would be handled appropriately and immediately.  So we will see.

I have been researching every web-site out there regarding these Spitz tumors in children.  The information is definitely scary. 

Hoping for the best!

Nicole, your story brings me much comfort and I thank you for that 🙂

I am refusing to accept the answer that my sons slides are lost.  I call the patient advocacy group at Sloan Kettering yesterday afternoon.  I almost immediately received a call from the Pathology Department Administrator regarding the missing slides.  He told me that he was working diligently to find the slides and trying to get duplicate slides from the lab in Pittsburgh.  He assured me that this would be handled appropriately and immediately.  So we will see.

I have been researching every web-site out there regarding these Spitz tumors in children.  The information is definitely scary. 

Hoping for the best!