Today, I met with Dr. Eric Liu and discussed my GA-68 scan results. Both quite positive and surprising results left me feeling very happy. It could have been much, much worse.
- Found my primary tumor after 6 years! Instead of a mid-gut carcinoid, I am now a pNET (pancreatic neuroendocrine tumor). I did not expect that. Although this is what killed Steve Jobs and is very often more dangerous than mid-gut carcinoid, it is not a great worry for me because it is small and at the very tail of my pancreas. Dr. Liu says my pancreas looks as healthy as his.
- There is some progression. There is some spreading of the disease to several places in my body. Dr. Liu calls them freckles. Nothing very serious it seems.
- There are small tumors in my bone in a couple of places. The bone above my eye and two places in my spinal column (in bone, not on spinal cord! Whew!)
- The CT scan was wrong last November. The tumors that did not show on that CT scan, though they had appeared in earlier scans, are still in my liver but not looking very active.
- The nodules on my thyroid did not light up on the scan. This means that they are not NETs. I think Dr. Liu is convinced that they are a benign form of thyroid cancer. We will continue to watch them.
We will change surveillance to a CT scan once a year and continue with the Sandostatin which is still working. If I get sicker or have more pain, the good scan indicates that I am a good candidate for PRRT (Peptide Receptor Radionuclide Therapy). PRRT works identically to the GA-68 except the gallium 68 is replaced by lutetium 177 (Lutathera) which is much more radioactive and thus capable of killing the tumors. It should be approved in the U.S. within six months which probably means that I can avoid more surgeries.
You can find my explanation of what a GA-68 Netspot scan is here: About the GA-68 Scan
EDIT: There has been tremendous response to these two posts on social media. The most frequent question is “Where can I get a gallium scan?”. The best resources for this that I can find are: Carcinoid Cancer Foundation: GA-68 Locations, Northern California CarciNET: searchable map of the U.S.
All in all, I should be able to get on with my life for a few years with minimal interference from this particular cancer.
May we all have the best possible outcomes,
Cy
This is good news. Hope your pain does not worsen.
So glad for you Cy!
Such a relief to find that sneaky primary! I know you feel better. Knowledge is power.
Cu, Thanks so much for such a good description of the gallium 68. I’m pretty need to all this, so I don’t knows alot about different tests and everything. Your explanation was so easy to understand, that I felt like I could actually see what was going on!
It is good you found the source tumor. Here’s hoping the new treatment will be the cure.
Awesome news! Hey, we need to have breakfast this week, bro…I’ll call or email you.
Wow, never thought finding a tumor would get such a positive response. You and your doc’s have been exploring for that for years. Hopefully this will allow more targeted treatment. Good luck, Cy.
Yep, Frank, several different doctors and I have been hunting that little bugger for 6 years! Because my pancreas is healthy and I am not feeling any symptoms associated with pNET, we are not changing anything. When changes do send us into action, it is good to know that I am a good candidate for PRRT.
Thank you for educating and sharing with us Cy. I live in Fort Myers,FL now and I’m going to Univ. of Kentucky the end of June with Dr. Lowell Anthony at the U.K. NETS Clinic. I tried Moffatt in Tampa and they were very unsatisfactory. I wish you the best.
Brad, It’s good to hear from you. I hear that Dr. Anthony is very good. I wish you the best possible outcomes.
Good news, uncle. And some damn fine writing and explanation as well. Love you!!
Believe it or not, in part because of the blog, I have been asked to join a speaker on the stage this Sunday at the Society of Nuclear Medicine and Molecular Imaging annual conference which is in Denver this week! Sunday is “Patient Day” at the conference.
I’m glad you got the scan Cy! Not bad news overall and at least you found the primary! They have the GA-68 Scan in Utah now. I will ask for it for my next years scan! They are only doing it at two places in SLC and luckily, one is covered on my insurance. Thanks for sharing your results!
Amazing post!
Thanks very much for sharing this information. It is very helpful. I have two questions, if you don’t mind. Some of us never know of the primary tumor, but still get treatment etc. Why is it important to know of the primary? To guide treatment more accurately? Secondly, now that GA-68 PET/CT scans are available and so much more precise, why would we NET patients get other scans, CT, octreotide, etc.
Best and healthy wishes to all.
Margaret
Hi Margaret,
In the USA, surgery to remove the primary and debulking (removing as much as possible) metastases is still most specialists’ preferred method of treating NETS when possible. I have read that, in Europe, PRRT is the first choice.
The location can make a difference for treatment.
My Dr. Liu says that MRI is the best way to look at the liver tumors. CT scans are more available and usually cheaper than GA-68. As far as the octreotide scan, it is obsolete but some doctors have not yet gotten the message. Nor do many doctors yet know about the GA-68, much less PRRT.
We must always remember that the effectiveness of the GA-68 and of PRRT are dependent upon the tumors having the appropriate somatostatin (natural octreotide) receptors. I have read that about 70% of tumors have good enough receptors. The receptors vary by patient and even by tumors within a patient!
May you have the best possible outcome,
Cy