@dennis
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- October 3, 2012 at 6:29 am
Hi Kim,
First, to answer your question about it showing up later..unfortunately the answer is yes. OM is one cancer that is considered uncurable and has shown up up to 20 years later. The genetic testing in Arizona is most likely at Castle Biosciences. Based on your test result you can be in one of three groups..1a, 1b or 2. 1a and 1b have a fairly low risk of metastasis, class 2 a very high risk. Keep in mind the test has only been out about a year but it has been in research for about 7 years I believe. The test was primarily developed by Dr. William Harbour at St. Louis.
You should think about if you really want to know the results of the test before asking your doctor for them. The reason I say this is that if I remember correctly Class 2 people are considered to have about a 95% chance of dying from OM spreading (usually to their liver), and about 55% are dead within 5 years according to their data. Since the doctors say there is no "cure" once OM has spread the only thing that can be done are treatments that can keep you alive for awhile. I am Class 2 and basically it was very tough news to hear but the science is new and only time will tell how accurate it really is. Also, even for Class 2's 45-50% are alive after 5 years and we don't know how long those people live as there is not enough data. There are other factors that are supposed to affect your risk profile such as age, sex, cell type etc.
The other side of the coin is that is you are Class1 you basically really dont have to worry about your mortality from OM. So anyway, depending on your personality you may or may not want to know the results because if you are Class 2 your next question would be..ok what can we do to stop this from happening? The doctors will tell you nothing..:(
Having said that, there is more and more evidence for supplements and other alternative approaches working for people. In addition there are new developments like PHP, IHP, Immuno Embolizations etc. that are keeping stage IV OM patients alive longer and longer. The key is to catch it EARLY if it does spread as OM is fairly aggresive when it spreads. I get an MRI of my liver every 3 months, CAT scan once a year and xray of lungs once a year.
I know your head is probably spinning from all that you are going thru right now, but there is a community of us here to offer help and support.
I'm keeping my fingers crossed that you are a Class 1!
-Dennis
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- October 3, 2012 at 6:29 am
Hi Kim,
First, to answer your question about it showing up later..unfortunately the answer is yes. OM is one cancer that is considered uncurable and has shown up up to 20 years later. The genetic testing in Arizona is most likely at Castle Biosciences. Based on your test result you can be in one of three groups..1a, 1b or 2. 1a and 1b have a fairly low risk of metastasis, class 2 a very high risk. Keep in mind the test has only been out about a year but it has been in research for about 7 years I believe. The test was primarily developed by Dr. William Harbour at St. Louis.
You should think about if you really want to know the results of the test before asking your doctor for them. The reason I say this is that if I remember correctly Class 2 people are considered to have about a 95% chance of dying from OM spreading (usually to their liver), and about 55% are dead within 5 years according to their data. Since the doctors say there is no "cure" once OM has spread the only thing that can be done are treatments that can keep you alive for awhile. I am Class 2 and basically it was very tough news to hear but the science is new and only time will tell how accurate it really is. Also, even for Class 2's 45-50% are alive after 5 years and we don't know how long those people live as there is not enough data. There are other factors that are supposed to affect your risk profile such as age, sex, cell type etc.
The other side of the coin is that is you are Class1 you basically really dont have to worry about your mortality from OM. So anyway, depending on your personality you may or may not want to know the results because if you are Class 2 your next question would be..ok what can we do to stop this from happening? The doctors will tell you nothing..:(
Having said that, there is more and more evidence for supplements and other alternative approaches working for people. In addition there are new developments like PHP, IHP, Immuno Embolizations etc. that are keeping stage IV OM patients alive longer and longer. The key is to catch it EARLY if it does spread as OM is fairly aggresive when it spreads. I get an MRI of my liver every 3 months, CAT scan once a year and xray of lungs once a year.
I know your head is probably spinning from all that you are going thru right now, but there is a community of us here to offer help and support.
I'm keeping my fingers crossed that you are a Class 1!
-Dennis
-
- October 3, 2012 at 6:29 am
Hi Kim,
First, to answer your question about it showing up later..unfortunately the answer is yes. OM is one cancer that is considered uncurable and has shown up up to 20 years later. The genetic testing in Arizona is most likely at Castle Biosciences. Based on your test result you can be in one of three groups..1a, 1b or 2. 1a and 1b have a fairly low risk of metastasis, class 2 a very high risk. Keep in mind the test has only been out about a year but it has been in research for about 7 years I believe. The test was primarily developed by Dr. William Harbour at St. Louis.
You should think about if you really want to know the results of the test before asking your doctor for them. The reason I say this is that if I remember correctly Class 2 people are considered to have about a 95% chance of dying from OM spreading (usually to their liver), and about 55% are dead within 5 years according to their data. Since the doctors say there is no "cure" once OM has spread the only thing that can be done are treatments that can keep you alive for awhile. I am Class 2 and basically it was very tough news to hear but the science is new and only time will tell how accurate it really is. Also, even for Class 2's 45-50% are alive after 5 years and we don't know how long those people live as there is not enough data. There are other factors that are supposed to affect your risk profile such as age, sex, cell type etc.
The other side of the coin is that is you are Class1 you basically really dont have to worry about your mortality from OM. So anyway, depending on your personality you may or may not want to know the results because if you are Class 2 your next question would be..ok what can we do to stop this from happening? The doctors will tell you nothing..:(
Having said that, there is more and more evidence for supplements and other alternative approaches working for people. In addition there are new developments like PHP, IHP, Immuno Embolizations etc. that are keeping stage IV OM patients alive longer and longer. The key is to catch it EARLY if it does spread as OM is fairly aggresive when it spreads. I get an MRI of my liver every 3 months, CAT scan once a year and xray of lungs once a year.
I know your head is probably spinning from all that you are going thru right now, but there is a community of us here to offer help and support.
I'm keeping my fingers crossed that you are a Class 1!
-Dennis
