[Randypea]

I was diagnosed with NET cancer recently and my doctor incorrectly ordered the older radiotracer scan. It only showed 1/2 of my tumors, missing the most important primary tumor. This newer scan/radiotracer showed double the number of tumors including the most important step of finding the primary. I will soon have cytoreduction surgery to remove the tumors. Unless you have other biomarkers showing cancer, the issue for this scan is cost - $2-5K. You would not do it casually. Contact me if you want to see a side by side comparison of this new scan beside an older one.

[lipman]

Thanks for sharing. You got FDG PET ("older") as well as FAPI? Are you in the US? Curious if FAPI is already in wide use.... does FDG not work that well for NET ?

[Randypea]

I am in the US and FDG PET does not work for NET. The "older" scan was Pet radiolabeled with indium-111. Comparison is here: http://prntscr.com/o02jsg Left is the newer scan, which uses Gallium 68. The primary tumor is uppermost right side, liver metastasis is left side, and small lower lighted up areas are lymph nodes. All will be removed soon. Lit up area below is the radiotracer in my bladder before urinating. :-)

[orr721]

Strange to see images from my specialty here on HN, but no. On the right hand side you have a classic planar OctreoScan (and from posterior view at that). What you have on the left side is a 68Ga-DOTA-(TOC/NOC/TATE) scan, not the new 68Ga-FAPI scan which I believe is only available in Heidelberg, Germany for now. While 68Ga-DOTA-(TOC/NOC/TATE) are probably not as good as 68Ga-FAPI (we don't know that yet, pending research) it is markedly better than OctreoScan, especially for small primary lesions, as is often the case in NETs. Source: I am an MD specialized in nuclear medicine.

[tecleandor]

Wow! Do you have DICOM files for that! Good thing they found all that! Good luck with all the surgery, you'll get better soon!

[Randypea]

Yes I have all the Dicom files and put all the images on a password protected server so I can share with prospective surgeons. This really helped me find the best possible surgeon. THANKS!

[salgernon]

Minor side note: I did that too but found that institutions were locked down and could not access my public server, and they wouldn’t accept a usb drive with the same data. They were only set up to receive FAT dvds - and I spent many, many hours duping DVD’s for doctors in their waiting rooms.

[tecleandor]

The USB thing might be a security policy in action. The DVD (and that's weird, because I think I've never seen DVDs, but lots of CDRs) is probably a historical thing related to the DICOM Supplement 19 General Purpose CD-R Image Interchange Profile standard.

[lipman]

Good luck with the surgery! You probably got Octreoscan which is used for NET - it's SPECT imaging which is generally worse that PET, but (until now) there wasn't a good PET tracer that works in NET. Awesome to hear a story of how this new tracer could really help patients.

[orr721]

Sorry, this is not true. 68Ga-labelled DOTATOC, DOTANOC, and DOTATATE are used diagnosis and therapy of NETs for more than 10 years. They are widely available in Europe and in some major US centers. If the new 68Ga-FAPI will be better remains to be seen, I suppose the Heidelberg group will publish some research soon.

[lipman]

I just took him at his word that it was FAPI & was asking if it is available in the US - also I favor PET as a modality b/c it's quantitative. No judgement on a particular tracer.

[Randypea]

You are correct it's only in the last several years this Gallium 68 scan has been available in the US, but was available in Europe long before - like many cancer treatments.

[Randypea]

Yes it was an Octreotide scan.

[whytaka]

Best of luck with your surgery.

[jerzone]

I've had a couple NETSPOT (w/gallium68 dotate) scans this year after surgery in January to remove mass revealed it was a NET. Would be interested in chatting about it. I haven't requested the images yet, but it sounds interesting.

[Randypea]

Yes let's chat!!! Send email to randypea at gmai!.c0M

[jerzone]

Ok, mail sent.