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68Ga DOTATATE Positron Emission Tomography (PET) Now at Mayo Clinic

Posted by @hopeful33250, Jun 14, 2017

@amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 @junebug15 @tomewilson

This article regarding 68Ga DOTATATE Positron Emission Tomography (PET) comes to us from Mayo Clinic’s, Dr. Ayse T. Kendi and Medical/NET oncologist Dr. Thorvardur Halfdanarson, regarding this new diagnostic tool for imaging NETs. As this is now available at Mayo Clinic, Rochester, MN, I wanted you all to be aware of it.

68Ga DOTATATE Positron Emission Tomography (PET) is the new golden standard for imaging of neuroendocrine tumors (NETs). [68Ga] DOTATATE PET has been used in Europe and Australia for the last 10 years effectively as the first line imaging choice for NETs and replaced Octreoscan years ago. Recently this imaging modality has been approved by FDA and was made available to the NET community in USA. 68Ga DOTATATE has unique ability to bind to the somatostatin receptors that are overpopulated on the cell surface of NET cells. The somatostatin receptors can serve both as a target for imaging such as Ga68 DOTATATE PET/CT imaging and the less accurate Octreoscan as well as a target for therapy, either with somatostatin analogs (octreotide and lanreotide) and radioactively tagged somatostatin analogs such as Lu-177 DOTATATE (Lutathera). Gallium is the part that acts like a light-source that is attached to the peptide (DOTATATE) which has high affinity to bind to these receptors. Once the [68Ga] DOTATATE is injected through a vein and circulates in the body for about 60 minutes, it is time to get the images. Unlike Octreoscan, you don’t need to have multiple visits to nuclear medicine. One visit for about 2 hours is all that is needed.
68Ga DOTATATE can detect more and smaller lesions than the older Octreoscans, has lower radiation and is essential for assessment for peptide receptor radionuclide therapy (PRRT). With the advent of Ga68 imaging, there is no role for Octrescans where Ga68 imaging is available. Please know that although most of NETs will light up, some won’t light up and you may need another imaging with MRI, CT or FDG-PET/CT.
Please also note that, although it is FDA approved, it is an imaging modality that is not available in every hospital or imaging center. Please make sure to ask your NET oncologist if and where you could get the imaging.
At Mayo, we have completed more than 100 cases since November 2016. As a team we are very efficient both in acquisition and interpretation of the images. We work in close collaboration of NET oncologists in our institution and most, if not all patients will be offered the opportunity to meet with a NET specialist within then Division of Medical Oncology to discuss the results of the Ga68 DOTATATE imaging study and to formulate a treatment plan going forward which also will include the use of circulating blood markers as indicated. There are now data to suggest that treatment outcomes are better for patients treated at large and specialized NET centers.

Please feel free to comment or ask any questions that you may have. I will see that your questions are answered by one of our clinicians at Mayo.

Teresa

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I would be interested In the data suggesting that treatment outcomes are better for patients treated at large and specialized NET centers.

@tomewilson

I would be interested In the data suggesting that treatment outcomes are better for patients treated at large and specialized NET centers.

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@tomewilson Hi Tom: While I don’t know of any stats or data, I have personally found that large medical centers are better for most anything that is rare or even serious, such as cancer. They tend to have the latest techniques, equipment as well as personnel who are well qualified and trained. I have been in smaller hospital systems which are rated as good, however, I’ve received better treatment at large university or medical centers. For example, for rather small NETs, I have had major surgeries when I later discovered that an endoscopic procedure could be done at a university hospital. I could have saved myself the 3 hour surgery and 7 day hospital stay had I driven a little further. Perhaps other members will chime in with their opinions as well. Teresa

@tomewilson

I would be interested In the data suggesting that treatment outcomes are better for patients treated at large and specialized NET centers.

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Teresa, I don’t disagree with you. The logic is there.

I’m sorry to hear about your experience. That is disappointing for sure.

The reason I was curious is our health insurer wants my wife to go to an ‘in-network’ provider even though the facility isn’t a recognized NETs center of excellence (like Mayo). So far I have convinced them to include Mayo in-network. That’s why I was interested to see if there was in fact, a published study. As I’m sure you can appreciate, insurance companies don’t care about opinions, only the facts, and science!

@tomewilson

I would be interested In the data suggesting that treatment outcomes are better for patients treated at large and specialized NET centers.

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@tomewilson Hi Tom: I’ll check into that and see what I can find. Thanks for your kind note! Teresa

@tomewilson I am in the process of collecting some articles regarding the matter of Multidisciplinary Care Centers for treatment of NETs. I hope to have something for you by Monday. Teresa

I have attached an article (pdf format) that speaks to the importance of Multidisciplinary Centers for the Care of NETs. I think this is of importance to all of us who are dealing with NETs. Teresa

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Multidisciplinary_care_NET (4) (Multidisciplinary_care_NET-4.pdf)

@hopeful33250

I have attached an article (pdf format) that speaks to the importance of Multidisciplinary Centers for the Care of NETs. I think this is of importance to all of us who are dealing with NETs. Teresa

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Thank you. I seem to remember Dr. Eugene Woltering also publishing a similar study for NETs.

@hopeful33250

I have attached an article (pdf format) that speaks to the importance of Multidisciplinary Centers for the Care of NETs. I think this is of importance to all of us who are dealing with NETs. Teresa

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Tom: If you contact his office, they may provide it for you. Teresa

@hopeful33250

I have attached an article (pdf format) that speaks to the importance of Multidisciplinary Centers for the Care of NETs. I think this is of importance to all of us who are dealing with NETs. Teresa

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Teresa, I was just making you aware of it. I’ll track it down and post it here. It is a very relevant piece.

Hi Teresa: I know the GA68 is available at Mayo, but unless they’ve changed their policy, please be aware that if you go there you may have to pay an additional fee. I talked to them before I went to Moffitt for my scan and they will tell you that they accept assignment, but that’s not entirely true. They do accept assignment from Medicare, as far as what Medicare will pay them, but they do not accept assignment from Medicare for the entire fee. You are left with the balance. This happened to my mother-in-law when we took here there for some sort of scan. She was left with a residual bill. Unfortunately, we didn’t understand their protocol and we were left with a hefty bill. Just wanted to make all aware of this. Be very careful if you go to Mayo that you completely understand their policy. It’s a little confusing. Hope this will help to clear up some misconceptions regarding Medicare and Mayo.

@junebug15

Hi Teresa: I know the GA68 is available at Mayo, but unless they’ve changed their policy, please be aware that if you go there you may have to pay an additional fee. I talked to them before I went to Moffitt for my scan and they will tell you that they accept assignment, but that’s not entirely true. They do accept assignment from Medicare, as far as what Medicare will pay them, but they do not accept assignment from Medicare for the entire fee. You are left with the balance. This happened to my mother-in-law when we took here there for some sort of scan. She was left with a residual bill. Unfortunately, we didn’t understand their protocol and we were left with a hefty bill. Just wanted to make all aware of this. Be very careful if you go to Mayo that you completely understand their policy. It’s a little confusing. Hope this will help to clear up some misconceptions regarding Medicare and Mayo.

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Hi @junebug15, thank you for the information. I think it might be a good idea like you said to check it out first.

Here is information about Mayo Clinic’s Billing and Insurance
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance which includes information about
Charitable Care and Financial Assistance at Mayo Clinic
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

John

@junebug15

Hi Teresa: I know the GA68 is available at Mayo, but unless they’ve changed their policy, please be aware that if you go there you may have to pay an additional fee. I talked to them before I went to Moffitt for my scan and they will tell you that they accept assignment, but that’s not entirely true. They do accept assignment from Medicare, as far as what Medicare will pay them, but they do not accept assignment from Medicare for the entire fee. You are left with the balance. This happened to my mother-in-law when we took here there for some sort of scan. She was left with a residual bill. Unfortunately, we didn’t understand their protocol and we were left with a hefty bill. Just wanted to make all aware of this. Be very careful if you go to Mayo that you completely understand their policy. It’s a little confusing. Hope this will help to clear up some misconceptions regarding Medicare and Mayo.

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Hi John: I opened your site and it does say that the patient will be responsible for anything that Medicare does not cover. The problem is that they really don’t explain their position fully. People with Medicare think that they are completely covered and then are hit with a big bill. Even when my husband called them, and he is fully aware of their policy, they didn’t know how to explain it to him. Anyway, hope your info also will be helpful to anyone interested in Mayo. Thanks.

Joan

Hello All:

As it has been awhile now since the 68Ga DOTATATE Positron Emission Tomography (PET) has been actively in use to detect NETs I was just wondering if any of our Members have been involved in this test, yet? If so, please share your experience regarding the test results, any costs you personally incurred, etc.

New treatments and testing for NETs are few and far between so it is good to have a lot of information.

Teresa

My wife has had 3 NETSPOT's or GA-68 gallium scans in 2017 and 2018. The first test was on 5/25/17 at Mayo Rochester. The cost was $18,547 of which $6380 was for the gallium. The second UW Health in Madison, WI was $17,063 and the gallium was $5670. The third and final was on 3/27/18 at Mayo Rochester for a total cost of $15,636 with gallium representing $6264 of the cost. Based on 3 scans, the average cost was $17,082 of which the gallium represented 36% of the cost or $6,105 on average. The scan itself was about 2 to 2.5 hours start to finish. My wife used to be pretty claustrophobic, so she takes 2 mg of Lorazepam and has no issues, except being sleepy when its over. The worst part (as we all know) is the scanxiety waiting for the results.

@tomewilson

My wife has had 3 NETSPOT's or GA-68 gallium scans in 2017 and 2018. The first test was on 5/25/17 at Mayo Rochester. The cost was $18,547 of which $6380 was for the gallium. The second UW Health in Madison, WI was $17,063 and the gallium was $5670. The third and final was on 3/27/18 at Mayo Rochester for a total cost of $15,636 with gallium representing $6264 of the cost. Based on 3 scans, the average cost was $17,082 of which the gallium represented 36% of the cost or $6,105 on average. The scan itself was about 2 to 2.5 hours start to finish. My wife used to be pretty claustrophobic, so she takes 2 mg of Lorazepam and has no issues, except being sleepy when its over. The worst part (as we all know) is the scanxiety waiting for the results.

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@tomewilson

Thanks for the information on your wife's experiences. From what I understand the test lasts several hours, with an injection and then several hours of a wait before the scanning. Was this her experience as well?

Were most of the costs covered by insurance? Did the tests give the treating doctors good information?

Teresa

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