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.

penguino4739 | @penguino4739 | Mar 28, 2023

A place you might want to contact for treatment and/or a second opinion is MD Anderson in Houston, TX. Patients seek treatment there from all over the world, so I think it's worth a look. Good luck in your health journey.

pavlina60 | @pavlina60 | Mar 29, 2023

I have been treated for pancreatic NET in Upstate Cancer Center in Syracuse, NY. They have Ga68-dotatate scan ability.

Turkey | @tomrennie | Mar 29, 2023

Why is that specific test so important to you?

pavlina60 | @pavlina60 | Mar 29, 2023

In reply to @tomrennie "Why is that specific test so important to you?" + (show)

@tomrennie
Ga-68 dotatate is specific for NETs. It gives the doctors all places where NETs are. Usefull for treatment and surgery.

Turkey | @tomrennie | Mar 29, 2023

It is funny. That is the final scan I got for the oncologist to tell me I had pancreatic cancer that spread to my liver. Also, that I had NETs. So, what you are saying makes sense. The scan was August of 2022. I am being treated at Mayo Phoenix. I just went back to my patient portal to review all of my tests.

phyllisden | @phyllisden | Mar 29, 2023

rita2023, I'm sorry to hear about your situation. You are absolutely right in wanting to find this type of scan. I was sick for eleven years before I had an intestinal blockage in 2018 and they found a neuroendocrine tumor - which had never shown up on multiple CTs. In 2020 I went to Mayo in Phoenix for a consult and the Dotatate scan, which showed lesions scattered throughout my body. In 2021 I went back for PRRT treatment.
I believe Mayo in Rochester, MN also has specialists who work with patients with neuroendocrine tumors.
On the Neuroendocrine Tumor Research Foundation website (netrf.org) there's a section on imaging tests including a video of a presentation by Dr. Sumeet Virmani of Rush University about the GA 68 scan.
Good luck to you and your parent, and continue to reach out to the site as you all start this journey.

davisnrn | @davisnrn | Mar 29, 2023

Definitely seek the NET specific PET scan and be sure to see an oncologist with lots of NET experience since NETS do not behave like other solid tumors. I was seen at Mayo in Rochester Minnesota andmy care was excellent and they treat many NET patients so NET experts are readily available. They did not stop until I had a treatment plan that I believe keeps me in very good health in spite of my NET metastasis ald also lymphoma. I owe my good health status to Mayo expertise. Good luck getting the right scans and a treatment plan you are confident about.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 30, 2023

Hello @rita2023 and welcome to the NETs discussion group on Mayo Clinic Connect. You are wise to seek a GA 68 scan. Here is some information about it from a radiologist at Mayo Clinic in Rochester, MN.
--68 GA Dotatate PET
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
If you are interested in an appointment at Mayo Clinic, here is a link you can use to start the appointment process, http://mayocl.in/1mtmR63

You might want to check with your insurance to see if there is a cancer center nearby where you can have this test done.

I am a 20-year survivor of NETs, having had three surgeries for NETs in the upper digestive tract. So far, surgery has been the only treatment needed.

If you care to share more, when was your parent diagnosed with a NET? Has surgery been suggested?