› Forums › General Melanoma Community › My 14 year old daughter just diagnosed with a Spitzoid melanoma
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jennunicorn.
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- February 6, 2017 at 6:29 pm
My 14 year old daughter had an odd looking mole on the back of her upper arm which I hadn't noticed before. It was irritated and we went to a dermatologist, Dr. John Maddox in Greenbrae, CA to check it. He shaved it off and sent it for a biopsy. Two weeks later he called and said it was a Spitz' nevi and the rest should be excised from her arm as a precaution; and that the lab was doing further tests. He called back just now (another 2 weeks later) and said that it was a Spitzoid melanoma and my daughter would have to have it cut out immediately and then they would do a Sentinel Node Biopsy and a CAT scan and a PET scan to see if it had spread anywhere. He referred all further questions to the doctor who did the biopsy and who I think will do the surgery, Dr. Mohammed Kashani, Director of the California Pacific Medical Center – Center for Melanoma Research in San Francisco. I'm waiting for a call from him. 10 AM Mon. Feb. 6, 2017. Any advice anyone can give me would be appreciated. I need to know the right questions to ask. I need to know how to talk to my daughter about this – my beautiful, straight A, rower athlete, sweet, loving daughter. I need to get my head together and figure out the right and encouraging way to frame this for her.
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- February 6, 2017 at 6:51 pm
I would recommend getting into UCSF melanoma center, their knowledge on melanoma and the different forms is amazing. I know that one of the top dermapathologists in the country for spitz is at UCSF, people from all across the country have their child's biopsies sent into him to get a firm confirmation of spitz since I've read it can be hard to determine whether it's regular or melanoma.
So sorry your daughter is having to go through this, hopefully we can be a good support system for you here.
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- February 7, 2017 at 2:42 am
Thank you for your reply, very kind of you. Apparently it will be a week before we can speak with Dr. Kashani. Do you know the name of the person at UCSF that is one of the top dermopathologists in the country? Dr. Philip Leboit was the one that did the pathology; I don't think there's a question as to diagnosis, I just don't know how severe it is and whether it's spread, etc. And it's so very hard to have to wait a week to find out.
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- February 7, 2017 at 2:42 am
Thank you for your reply, very kind of you. Apparently it will be a week before we can speak with Dr. Kashani. Do you know the name of the person at UCSF that is one of the top dermopathologists in the country? Dr. Philip Leboit was the one that did the pathology; I don't think there's a question as to diagnosis, I just don't know how severe it is and whether it's spread, etc. And it's so very hard to have to wait a week to find out.
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- February 7, 2017 at 3:38 am
Janner mentioned the Dr. Bastian, he's the name I have heard as well. I'm sure Dr. Leboit works with him, since they are both a part of the UCSF cancer center.
Here is a link to UCSF Melanoma Center so you have their contact info.
https://www.ucsfhealth.org/clinics/melanoma_center/
Aisling is the person I first talked to when I booked my first appointment at UCSF, she is super sweet and she got me in immediately.. I called on a Friday and got an appointment for Monday. Haven't looked back since.
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- February 7, 2017 at 3:38 am
Janner mentioned the Dr. Bastian, he's the name I have heard as well. I'm sure Dr. Leboit works with him, since they are both a part of the UCSF cancer center.
Here is a link to UCSF Melanoma Center so you have their contact info.
https://www.ucsfhealth.org/clinics/melanoma_center/
Aisling is the person I first talked to when I booked my first appointment at UCSF, she is super sweet and she got me in immediately.. I called on a Friday and got an appointment for Monday. Haven't looked back since.
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- February 7, 2017 at 7:22 pm
Thanks very much for the name. Dr. Leboit at UCSF did all the pathology. We have an appointment with Dr. Kashani at CPMC for Monday. If that doesn't seem like the right path, I'll see if we can see Dr. Boris Bastian at UCSF. Thanks again to everyone who responded to me. It feels like hands held out to me in the darkness.
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- February 7, 2017 at 8:52 pm
Dr. Bastian doesn't see patients since he's a pathologist, his time is spent in the lab, but I can recommend if you do go to UCSF getting into see Dr. Susana Ortiz who is a co-director of the Melanoma Center, she is who I saw my first visit and is also my dermatologist, her knowledge is vast on melanoma. After seeing her she can refer you to one of the oncologists if that is needed. Mine is Dr. Katy Tsai, but there are others like Dr. Algazi and Dr. Daud who have been doing this many years with many years hands on in melanoma research as well.
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- February 7, 2017 at 8:52 pm
Dr. Bastian doesn't see patients since he's a pathologist, his time is spent in the lab, but I can recommend if you do go to UCSF getting into see Dr. Susana Ortiz who is a co-director of the Melanoma Center, she is who I saw my first visit and is also my dermatologist, her knowledge is vast on melanoma. After seeing her she can refer you to one of the oncologists if that is needed. Mine is Dr. Katy Tsai, but there are others like Dr. Algazi and Dr. Daud who have been doing this many years with many years hands on in melanoma research as well.
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- February 7, 2017 at 8:52 pm
Dr. Bastian doesn't see patients since he's a pathologist, his time is spent in the lab, but I can recommend if you do go to UCSF getting into see Dr. Susana Ortiz who is a co-director of the Melanoma Center, she is who I saw my first visit and is also my dermatologist, her knowledge is vast on melanoma. After seeing her she can refer you to one of the oncologists if that is needed. Mine is Dr. Katy Tsai, but there are others like Dr. Algazi and Dr. Daud who have been doing this many years with many years hands on in melanoma research as well.
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- February 7, 2017 at 7:22 pm
Thanks very much for the name. Dr. Leboit at UCSF did all the pathology. We have an appointment with Dr. Kashani at CPMC for Monday. If that doesn't seem like the right path, I'll see if we can see Dr. Boris Bastian at UCSF. Thanks again to everyone who responded to me. It feels like hands held out to me in the darkness.
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- February 7, 2017 at 7:22 pm
Thanks very much for the name. Dr. Leboit at UCSF did all the pathology. We have an appointment with Dr. Kashani at CPMC for Monday. If that doesn't seem like the right path, I'll see if we can see Dr. Boris Bastian at UCSF. Thanks again to everyone who responded to me. It feels like hands held out to me in the darkness.
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- February 7, 2017 at 3:38 am
Janner mentioned the Dr. Bastian, he's the name I have heard as well. I'm sure Dr. Leboit works with him, since they are both a part of the UCSF cancer center.
Here is a link to UCSF Melanoma Center so you have their contact info.
https://www.ucsfhealth.org/clinics/melanoma_center/
Aisling is the person I first talked to when I booked my first appointment at UCSF, she is super sweet and she got me in immediately.. I called on a Friday and got an appointment for Monday. Haven't looked back since.
-
- February 7, 2017 at 2:42 am
Thank you for your reply, very kind of you. Apparently it will be a week before we can speak with Dr. Kashani. Do you know the name of the person at UCSF that is one of the top dermopathologists in the country? Dr. Philip Leboit was the one that did the pathology; I don't think there's a question as to diagnosis, I just don't know how severe it is and whether it's spread, etc. And it's so very hard to have to wait a week to find out.
-
- February 6, 2017 at 6:51 pm
I would recommend getting into UCSF melanoma center, their knowledge on melanoma and the different forms is amazing. I know that one of the top dermapathologists in the country for spitz is at UCSF, people from all across the country have their child's biopsies sent into him to get a firm confirmation of spitz since I've read it can be hard to determine whether it's regular or melanoma.
So sorry your daughter is having to go through this, hopefully we can be a good support system for you here.
-
- February 6, 2017 at 6:51 pm
I would recommend getting into UCSF melanoma center, their knowledge on melanoma and the different forms is amazing. I know that one of the top dermapathologists in the country for spitz is at UCSF, people from all across the country have their child's biopsies sent into him to get a firm confirmation of spitz since I've read it can be hard to determine whether it's regular or melanoma.
So sorry your daughter is having to go through this, hopefully we can be a good support system for you here.
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- February 6, 2017 at 7:29 pm
Hi Julie,
I'll agree UCSF is an awesome place and I travel far to see my specialist there. Please consider it. As for the current plan you laid out, it's all standard of care protocol and you need to just go with it at this point, mostly as a precaution. The sooner these determinations are made the better. As a Dad of a teenage girl, I would say do not underestimate their strength, and understanding of her own situation. In other words, its very possible that "less is more" and don't overly focus on it. It only spawns fear. Luckily, it appears to have been caught early and we will never hear from you again. This is a club you do not want to be a member of, yet it's a fantastic resource of real-life experience if your daughter needs it.
Gary
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- February 6, 2017 at 9:39 pm
So sorry to hear about your daughter. My 15 year old girl was born at the California Pacific Medical Center in SF. So I know the hospital well. I had Melanoma and after my diagnosis my son had 2 large moles removed surgically because of the size and location – one mole covered his belly bottom. Luckily it was all ok and just regular moles. Please don't give up hope. Melanoma is very treatable! I agree that you need to find a pediatric Melanoma specialist even if it's far away. You need a team of doc experienced with pediatric Melanoma. Good luck!
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- February 6, 2017 at 9:39 pm
So sorry to hear about your daughter. My 15 year old girl was born at the California Pacific Medical Center in SF. So I know the hospital well. I had Melanoma and after my diagnosis my son had 2 large moles removed surgically because of the size and location – one mole covered his belly bottom. Luckily it was all ok and just regular moles. Please don't give up hope. Melanoma is very treatable! I agree that you need to find a pediatric Melanoma specialist even if it's far away. You need a team of doc experienced with pediatric Melanoma. Good luck!
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- February 6, 2017 at 9:50 pm
I don't want to put wrong hopes to your head. But when my son was having surgery a friend shared with my her sister's story. She was also told that her son has the same type of melanoma. And took some time to determine it wasn't. Supposedly it's hard to determine the difference even for melanoma pathologist. Please double check that the pathology is correct. I am from Europe but this happened in the US.
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- February 6, 2017 at 9:50 pm
I don't want to put wrong hopes to your head. But when my son was having surgery a friend shared with my her sister's story. She was also told that her son has the same type of melanoma. And took some time to determine it wasn't. Supposedly it's hard to determine the difference even for melanoma pathologist. Please double check that the pathology is correct. I am from Europe but this happened in the US.
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- February 7, 2017 at 7:30 pm
Well, after the initial round of pathology work which showed nothing, they've done genetic testing and the particular marker genes are mutated which apparently definitely means melanoma. I will learn more as this process unfolds. Of course, I hope they are wrong — and my daughter was misdiagnosed completely with a different horror when she was 6 — so it can happen. I'm not counting on it, though. Just trying to surf this and working on framing it for her when I tell her on Sunday before our Monday appointment. Thank you again.
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- February 7, 2017 at 7:30 pm
Well, after the initial round of pathology work which showed nothing, they've done genetic testing and the particular marker genes are mutated which apparently definitely means melanoma. I will learn more as this process unfolds. Of course, I hope they are wrong — and my daughter was misdiagnosed completely with a different horror when she was 6 — so it can happen. I'm not counting on it, though. Just trying to surf this and working on framing it for her when I tell her on Sunday before our Monday appointment. Thank you again.
-
- February 7, 2017 at 7:30 pm
Well, after the initial round of pathology work which showed nothing, they've done genetic testing and the particular marker genes are mutated which apparently definitely means melanoma. I will learn more as this process unfolds. Of course, I hope they are wrong — and my daughter was misdiagnosed completely with a different horror when she was 6 — so it can happen. I'm not counting on it, though. Just trying to surf this and working on framing it for her when I tell her on Sunday before our Monday appointment. Thank you again.
-
- February 6, 2017 at 9:50 pm
I don't want to put wrong hopes to your head. But when my son was having surgery a friend shared with my her sister's story. She was also told that her son has the same type of melanoma. And took some time to determine it wasn't. Supposedly it's hard to determine the difference even for melanoma pathologist. Please double check that the pathology is correct. I am from Europe but this happened in the US.
-
- February 6, 2017 at 9:39 pm
So sorry to hear about your daughter. My 15 year old girl was born at the California Pacific Medical Center in SF. So I know the hospital well. I had Melanoma and after my diagnosis my son had 2 large moles removed surgically because of the size and location – one mole covered his belly bottom. Luckily it was all ok and just regular moles. Please don't give up hope. Melanoma is very treatable! I agree that you need to find a pediatric Melanoma specialist even if it's far away. You need a team of doc experienced with pediatric Melanoma. Good luck!
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- February 7, 2017 at 2:48 am
Thank you, Gary, I appreciate your feedback. My daughter is strong and otherwise in perfect health, so I just pray it was caught early. I am going to do my best to frame it kind of one step at a time — hey, when they did that further testing on your mole it turns out that it was one of the bad kind, so we're going to see a specialist in San Francisco to get the rest of it taken out, and they might run some other tests too.
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- February 7, 2017 at 2:48 am
Thank you, Gary, I appreciate your feedback. My daughter is strong and otherwise in perfect health, so I just pray it was caught early. I am going to do my best to frame it kind of one step at a time — hey, when they did that further testing on your mole it turns out that it was one of the bad kind, so we're going to see a specialist in San Francisco to get the rest of it taken out, and they might run some other tests too.
-
- February 7, 2017 at 2:48 am
Thank you, Gary, I appreciate your feedback. My daughter is strong and otherwise in perfect health, so I just pray it was caught early. I am going to do my best to frame it kind of one step at a time — hey, when they did that further testing on your mole it turns out that it was one of the bad kind, so we're going to see a specialist in San Francisco to get the rest of it taken out, and they might run some other tests too.
-
- February 6, 2017 at 7:29 pm
Hi Julie,
I'll agree UCSF is an awesome place and I travel far to see my specialist there. Please consider it. As for the current plan you laid out, it's all standard of care protocol and you need to just go with it at this point, mostly as a precaution. The sooner these determinations are made the better. As a Dad of a teenage girl, I would say do not underestimate their strength, and understanding of her own situation. In other words, its very possible that "less is more" and don't overly focus on it. It only spawns fear. Luckily, it appears to have been caught early and we will never hear from you again. This is a club you do not want to be a member of, yet it's a fantastic resource of real-life experience if your daughter needs it.
Gary
-
- February 6, 2017 at 7:29 pm
Hi Julie,
I'll agree UCSF is an awesome place and I travel far to see my specialist there. Please consider it. As for the current plan you laid out, it's all standard of care protocol and you need to just go with it at this point, mostly as a precaution. The sooner these determinations are made the better. As a Dad of a teenage girl, I would say do not underestimate their strength, and understanding of her own situation. In other words, its very possible that "less is more" and don't overly focus on it. It only spawns fear. Luckily, it appears to have been caught early and we will never hear from you again. This is a club you do not want to be a member of, yet it's a fantastic resource of real-life experience if your daughter needs it.
Gary
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Tagged: cutaneous melanoma
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