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July 31, 2014 at 10:21 pm #22124Marie1972Participant
My four old had a biopsy they sent in to the experts in our area and they were unable to rule out melanoma and so have sent it to ucsf for cgh molecular testing and fish testing. We have to wait 2-3 weeks to know the results. How accurate are these results? Are they 100%? If they come back saying no melanoma can i trust that or should i insist on a second opinion? We have an additional concern because her brother died suddenly from undiagnosed hlh which is a life threatening blood immune disorder. It is unknown if my daughter carries this same familial gene mutation. Cancers are known to trigger an hlh flare which in her case could be deadly. So if they come back and say this is not melanoma can I trust that or do I push further? Exactly how accurate are these two tests in picking up cancers anyone know the answer to this?
Thanks for your help.July 31, 2014 at 10:45 pm #65127
I’m so sorry to hear of your loss, and now this stressful situation. I have passed on your question to our board member who is a dermatopathologist (and quite excellent) I have not heard of these testing methods. If Boris Bastian is the pathologist looking at it from UCSF, you are in good hands. You can always get a second opinion, which would be highly recommended from UPENN, or perhaps Dr.MIHM.com
The slides can be easily sent. I will let you know what our board member says.August 1, 2014 at 2:00 am #65128KmarieParticipant
Thank you so so much! It is really hard for mind not to go to the worst case outcome after what we have been through. I will keep checking
Back thank you again for
Your help!August 1, 2014 at 1:21 pm #65129
Here is what our dermatopathologist said, who is an expert: The patient most likely has an atypical Spitz tumor. These are lesions where it is difficult to differentiate between a Spitz nevus and Spitzoid melanoma. Studies in the literature have shown that distinguishing these two can be extremely difficult even for so-called experts in the field. Even the experts have gotten them wrong. Molecular testing (comparative genomic hybridization and Fluorescence In Situ Hybridization) looking for chromosomal abnormalities are the latest “hot topic” in trying to diagnose these lesions. These tests can be helpful, but unfortunately they are not 100% accurate. They are also too new to feel 100% confident with the result. I would agree that they are worth doing in this difficult situation, but remember that they are not perfect.August 2, 2014 at 3:26 pm #65130Marie1972Participant I called UCFS and requested Dr. Bastian handle this case and have set up a second opinion with Dr. Mihm when the final pathology report comes back. So now we wait. Thank you so much for the valuable information you both supplied.August 3, 2014 at 12:40 pm #65131 Good job! Please let us know how the opinions bear out.
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