1. < Neuroendocrine Tumors (NETs)
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Is there a list of the top NET specialists?

Posted by jagzandsherz @jagzandsherz, Jul 23 12:00pm

How can we find a list of the best NET specialists for a second opinion?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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lindabees | @lindabees | Jul 24 11:15am

The netrf doctor database that others mentioned is a great resource. Most of the listings there will tell you the percentage of the doctors patients that are nets and how long they've been treating nets. This is really helpful information to look at when making a doctor decision

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rhb18 | @rhb18 | Jul 26 5:33pm
In reply to @jagzandsherz "@hopeful33250 Thank you for your response. My husband has recently been diagnosed as having a NET...." + (show)
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@hopeful33250

Thank you for your response. My husband has recently been diagnosed as having a NET. We are in the beginning stages of discovery with scans happening next week.

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@jagzandsherz this is a difficult time but you are not alone. Please know that there are many current treatments and that medical treatments in this area are advancing at a rapid rate. I was diagnosed with NET’s at around 61 and am now 65 and the most comforting comment I was told by my specialist is that ‘we can manage this and it’s more than likely you will pass away from old age rather than NETS’. Of course everyone has their own journey and circumstances but keep this in mind. Your husband’s NET specialist team will be crucial to managing the stabilisation of his NETs & quality of life so your question is incredibly important and shows you are already on the ball.

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jagzandsherz | @jagzandsherz | Jul 26 9:25pm
In reply to @rhb18 "@jagzandsherz this is a difficult time but you are not alone. Please know that there are..." + (show)
Profile picture for rhb18 @rhb18

@jagzandsherz this is a difficult time but you are not alone. Please know that there are many current treatments and that medical treatments in this area are advancing at a rapid rate. I was diagnosed with NET’s at around 61 and am now 65 and the most comforting comment I was told by my specialist is that ‘we can manage this and it’s more than likely you will pass away from old age rather than NETS’. Of course everyone has their own journey and circumstances but keep this in mind. Your husband’s NET specialist team will be crucial to managing the stabilisation of his NETs & quality of life so your question is incredibly important and shows you are already on the ball.

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@rhb18
Thank you for your encouraging words. I’m happy you are doing well!

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