How to get a second opinion for an international patient??

Posted by amani79 @amani79, Aug 10, 2017

Hi all
I was wondering how can i get a second opinion for my 13 years old daughter that was diagnosed with neuroendocrine tumor with mets to liver
We are in Jordan,
Please help me in the procedure
I have her all CT scans PET scan liver biopsy reports

@hopeful33250

Thanks for the added information, @trivia. As NETs in the breast is rather unusual, I would like to invite @trixie1313, to this conversation. She also has had breast cancer with NETs. If you would like to read more about her experience, here is a link to a discussion she started on this topic,
https://connect.mayoclinic.org/discussion/ned-of-breast/
What type of treatment is being suggested for you @trivia? Are you seeing a NETs specialist?

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I don't have Neuroendocrine tumors. Mine are HR + HER2-. Sorry for the confusion. My Oncologist would like to start me on Piqray because of the mutations. But there's also another drug called Afinitory for PIK3 mutation that has a domain of H1047R, which seems more successful but with more side effects. The studies have paired Piqray with Fulvestrant to cover the HR+ mutation.

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@trivia

I don't have Neuroendocrine tumors. Mine are HR + HER2-. Sorry for the confusion. My Oncologist would like to start me on Piqray because of the mutations. But there's also another drug called Afinitory for PIK3 mutation that has a domain of H1047R, which seems more successful but with more side effects. The studies have paired Piqray with Fulvestrant to cover the HR+ mutation.

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Hi @trivia,

We do have a discussion in the Breast Cancer group where others have discussed HR + HER2-. Here is the link https://connect.mayoclinic.org/discussion/her2-positive-her2-negative/
Perhaps you can find some support and additional information there.

I would like to invite @elizm @cindylb and @michmom to post with you as well.

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