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.

newnet | @newnet | Oct 4, 2023

In reply to @pavlina60 "I have been treated for pancreatic NET in Upstate Cancer Center in Syracuse, NY. They have..." + (show)

Hi @pavlina60 I just had my GA68-Dotatate Scan done at Upstate on Monday.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 4, 2023

In reply to @newnet "Hi @pavlina60 I just had my GA68-Dotatate Scan done at Upstate on Monday." + (show)

Hello @newnet and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. I joined several years ago when I was diagnosed with my third NET of the upper digestive tract and I've found support and encouragement here. Since NETs are a rare form of cancer, it helps to find others who are on the same journey of living with this rather unusual disorder. Many of us never had symptoms, but the NETs were found incidentally during a scan or procedure that was unrelated to the NET.

I see from your post that you have recently had a GA68-Dotatate Scan. As you are comfortable doing so, would you share a bit about your diagnosis of NETs? For example, were there symptoms that led to the diagnosis, how long ago were you diagnosed. Have you had any surgery or other treatments?

I look forward to getting to know you!

Teresa, Volunteer Mentor | @hopeful33250 | Oct 4, 2023

In reply to @rubymontana "Any thoughts on Rppt? And who is the best Net Specialist in Phoenix? Thank you!" + (show)

Hello @rubymontana and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. It is a great place to get support and encouragement as you deal with NETs. From your post, it looks like you are interested in learning more about PRRT, also known as Lutathera.

On Connect, there are several members who have posted about this therapy. I would encourage you to read their posts, https://connect.mayoclinic.org/discussion/prrt-treatment/.

This would be the best place to post about any questions or concerns you might have regarding this therapy.

You asked about NET specialists in Phoenix. There is a Mayo facility in Arizona with NET specialists. Here is a link for appointment information,
http://mayocl.in/1mtmR63. If for any reason you cannot be seen at Mayo, here is a list of NET specialists nationwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I look forward to getting to know you, so as you are comfortable doing so, please share a bit about your history with NETs. Is this a recent diagnosis for you? What surgeries or other treatments have you had before considering PRRT?

pavlina60 | @pavlina60 | Oct 4, 2023

In reply to @newnet "Hi @pavlina60 I just had my GA68-Dotatate Scan done at Upstate on Monday." + (show)

Awesome! Who is your doctor? And what type of NET do you have?

pavlina60 | @pavlina60 | Oct 4, 2023

In reply to @newnet "Hi @pavlina60 I just had my GA68-Dotatate Scan done at Upstate on Monday." + (show)

I have been dealing with Scans, injections, surgery for the last 11 months. If I can be of any help, please, reach out! Good luck!💜

newnet | @newnet | Oct 5, 2023

In reply to @hopeful33250 "Hello @newnet and welcome to the NETs support group on Mayo Connect. I'm glad that you..." + (show)

Hi @hopeful33250 and thanks for reaching out.

I went to the hospital on August 30th with a bad stomach ache and suspected appendicitis. After a CT scan they let me know I had a bowel blockage. They ended up taking me into surgery to discover what the blockage was and discovered two tumors - 3.9 cm tumor in my small intestine (ilium) and a 1.1 cm tumor in my omentum. I have recovered from the surgery and had my PET scan on Monday. While I haven't met with the oncologist yet, my scan results were posted to my EMR and I was able to see that I have two more tumors, the largest is 8 cm and in my thorax next to my aorta. This is my layman's reading of the radiologist's report.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 5, 2023

In reply to @newnet "Hi @hopeful33250 and thanks for reaching out. I went to the hospital on August 30th with..." + (show)

@newnet

You've been through a lot since August 30th when your discomfort started. It seems as though the only symptom you have had was a bad stomachache. Is that correct?

Do you currently have an appointment with an oncologist scheduled? Please continue to post with your questions and concerns. I understand that this is something that can be disconcerting to say the least.

What is the most difficult symptom you are experiencing now?