Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Posted by rita2023 @rita2023, Mar 28, 2023

Hello everyone. I have a parent who has been diagnosed with NETs, and we are considering a visit to the Mayo Clinic for treatment or at least a second opinion. We are specifically looking for a center that provides Octreoscans/ Ga-68 scans because she has only had regular CT scans done so far, but due to the specifics of her case, we feel uneasy with the results and want something more accurate. Does the Mayo Clinic offer these types of scans? If not, does anybody have any recommendations for centers that do? We're Canadian, so if anybody knows any centers up north, those recommendations would be more than welcome too.

Thank you.

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

We’ve agreed I will have the scan instead of the biopsy. Woohoo. The good news is that unbeknownst to me, since I’ve never inquired about the diotatate scan before, is that the oncology facility I go to just recently started doing the diotatate scan with gallium. Excellent. One minor issue is I can’t do it soon because it’s supposed to be done 1-2 days prior to a lanreotide injection and my next one isn’t until July 7. We’ll deal.

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@rrlbees

We’ve agreed I will have the scan instead of the biopsy. Woohoo. The good news is that unbeknownst to me, since I’ve never inquired about the diotatate scan before, is that the oncology facility I go to just recently started doing the diotatate scan with gallium. Excellent. One minor issue is I can’t do it soon because it’s supposed to be done 1-2 days prior to a lanreotide injection and my next one isn’t until July 7. We’ll deal.

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I would call another facility to ask that question. My husband has been having a Dotatate Pet Scan for 4 years now and has never been told that. You could try calling MUSC Radiology dept for pet scans and ask them. That's MUSC in Charleston, SC Good luck to you.

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@rrlbees

We’ve agreed I will have the scan instead of the biopsy. Woohoo. The good news is that unbeknownst to me, since I’ve never inquired about the diotatate scan before, is that the oncology facility I go to just recently started doing the diotatate scan with gallium. Excellent. One minor issue is I can’t do it soon because it’s supposed to be done 1-2 days prior to a lanreotide injection and my next one isn’t until July 7. We’ll deal.

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That's great to hear, @rrlbees! Both about the scan rather than a biopsy as well as having this particular scan available at the cancer center where you are already a patient.

I'm looking forward to hearing from you again.

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@sandy23

I would call another facility to ask that question. My husband has been having a Dotatate Pet Scan for 4 years now and has never been told that. You could try calling MUSC Radiology dept for pet scans and ask them. That's MUSC in Charleston, SC Good luck to you.

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I’ve looked at a couple of major cancer centers to understand that and they do recommend the scan being down a day or two prior to a lanreotide injection. Reason being is that the scan would be the furthest from the previous injection. I guess lanreotide can impact the uptake of gallium.

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@hopeful33250

That's great to hear, @rrlbees! Both about the scan rather than a biopsy as well as having this particular scan available at the cancer center where you are already a patient.

I'm looking forward to hearing from you again.

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Thanks. Now that we have the gallium dotatate scan we need to get someone to do PRRT here. Lol. If and when the time comes to go that route, I’d have to travel 1 1/2 hours to receive it.

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@rrlbees

I’ve looked at a couple of major cancer centers to understand that and they do recommend the scan being down a day or two prior to a lanreotide injection. Reason being is that the scan would be the furthest from the previous injection. I guess lanreotide can impact the uptake of gallium.

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Ok. My hubs is on octrotide (sandostatin) injections. Maybe that's why it's not an issue.

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@sandy23

Ok. My hubs is on octrotide (sandostatin) injections. Maybe that's why it's not an issue.

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I’m sure not every cancer center is in agreement on everything. I’ve attached a screenshot of one’s recommendations. Like I mentioned, it seems like the concern is the impact these injections can have on the uptake of gallium.

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I would recommend checking out Memorial Sloan Kettering in NYC as I think they have state of the art facilities & it might be a little closer to you. Another place, but it would be quite a distance for you is MD Anderson Cancer Center in Houston, Texas. They are top rated in U.S. & have state of art facilities. Not sure if your Canadian coverage would help pay for services, but it's worth a try. I had to seek treatment elsewhere because I couldn't get insurance as Texas is like 50th in the country for medical coverage. Lucky for me, my current oncologist was on ground floor of clinical trials for octreotide & lantreotide. Hope this helps & best to you & your family.

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Any thoughts on Rppt? And who is the best Net Specialist in Phoenix?
Thank you!

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