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

Posted by Teresa, Volunteer Mentor @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

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

Mentor
John, Volunteer Mentor | @johnbishop | Aug 15, 2017
In reply to @junebug15 "Hi Teresa: I know the GA68 is available at Mayo, but unless they've changed their policy,..." + (show)
@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

REPLY
junebug15 | @junebug15 | Aug 15, 2017
In reply to @junebug15 "Hi Teresa: I know the GA68 is available at Mayo, but unless they've changed their policy,..." + (show)
@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.

Jump to this post

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

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 26, 2018

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

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Tom Wilson | @tomewilson | Jul 26, 2018

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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1 reply
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Teresa, Volunteer Mentor | @hopeful33250 | Jul 26, 2018
In reply to @tomewilson "My wife has had 3 NETSPOT's or GA-68 gallium scans in 2017 and 2018. The first..." + (show)
@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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Tom Wilson | @tomewilson | Jul 26, 2018

Teresa, yes, the GA-68 lasts 2 to 2.5 hours. There is an injection and then you wait for it to 'filter' in order to begin the scan. 100% of the costs were covered by insurance after obtaining preapprovals. In our case, there were no issues and the results provided reliable and accurate information to the oncologist.

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gig666 | @gig666 | Feb 26 3:36pm
In reply to @hopeful33250 "I have attached an article (pdf format) that speaks to the importance of Multidisciplinary Centers for..." + (show)
@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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Have noticed dates 2017/ I hope.it means more medical centers have acquired the 68Ga Dotatate PET. Scan.

Thank you all for your help!

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1 reply
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Teresa, Volunteer Mentor | @hopeful33250 | Feb 27 8:02am
In reply to @gig666 "Have noticed dates 2017/ I hope.it means more medical centers have acquired the 68Ga Dotatate PET...." + (show)
@gig666

Have noticed dates 2017/ I hope.it means more medical centers have acquired the 68Ga Dotatate PET. Scan.

Thank you all for your help!

Jump to this post

You will probably find these NET-specific scans in research-oriented medical facilities. However, your doctor may be able to give you a referral to one of these facilities if your own hospital system does not have one.

Are you currently being seen by a NET specialist or going to a research-oriented hospital system?

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1 reply
sophiarose | @sophiarose | Feb 27 6:17pm

Hi Theresa
Does Mayo in Jacksonville have the equipment
I live on Long Island NY I need to decide weather to have PRRT done in Jacksonville or NY City
I met Dr Starr last week he us a wonderful caring doctor

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2 replies
dak10 | @dak10 | Feb 28 3:32pm

Hi, I have had 2 of these scans, one in 3/23 and my second on 2/20/24, both were used to determine staging and treatment. Year one on Lanreotide injections, to find out they are not working, second treatment suggested is a daily pill Afinitor. Is anyone on this and do you experience any side effects? I have lung nets, stage 4, inoperable

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