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Neuroendocrine Tumors (NETs) | Last Active: 2 days ago | Replies (26)
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Hi, and thank you so much for your reply. I hope your husband is doing well now. Since it's been so long, was surgery the best option as it cured him?
Not yet. I'm waiting the MRI in November and then I'm wondering if they'll suggest the Dotatate after that.
Right now I'm seeing a doctor at Princess Margaret. Should I ask them to give me a refer to the Susan Leslie Clinic? I would like to go here as you mentioned it and it looks to be a good place.
Thank you of the cnets website too.
Replies to "@lindabees Hi, and thank you so much for your reply. I hope your husband is doing..."
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@steph01
Unfortunately, my husband wasn't cured by the surgery as it had already spread extensively to his liver by the time he was diagnosed. However, the surgery did set the clock back dramatically for him. Studies have shown that removing the primary tumor can significantly improve overall survival and time to progession. So he is very glad he had it done. A Google search for "high volume pancreatic surgery centers in Canada" will lead you to some great recommendations.
I'm unfamiliar with how the medical system works in Canada and whether or not it would require a referral to the NET specialist or if you can just call them and ask for an appointmen. I would recommend doing whatever needs to be done to get to the specialist. It can make a big difference. This disease really requires a specialist as general GI oncologists usually lack the needed knowledge of it to properly treat it.
With this disease, it is extremely important that you educate yourself about it so that you can be your own strongest advocate. You need to know enough about it to know if what any doctor is telling you, including a specialist, makes sense, A great resource for you is https://cnets.ca/
Do not be intimidated by them and do not be afraid to ask questions. That is what has made the difference for my husband. With that in mind, I wouldn't wait for the doctor to suggest the dotatate scan. It can be done at the same time as the MRI and since as I understand it, it can take time for things to get scheduled in Canada, I would suggest reaching out to your doctor now amd asking about getting that done with the MRI if at all possible.
I hope everything goes well for you!!