A few days ago, I had a scan for cancer called a GA-68 or gallium-68 or Netspot. This was designed specifically to detect neuroendocrine tumors. My own results are reported here: The Results of my 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?”. I now can show you two sources:
I figure it might help other people with NETS to explain what this scan is. If you have had a cancer or know people with cancer, you probably know that a PET (Positron Emission Tomography) scan is used to try to locate tumors and metastases. The traditional PET scans normally do not work with neuroendocrine tumors because the biology of the tumor is different than most cancers so the standard markers do not function.
One year ago, the FDA approved a different kind of marker for use with PET scanners that is specifically designed for neuroendocrine tumor. The GA-68 (commercial name: Netspot) is an injectable that is a binding of radioactive gallium 68 to a somatostatin analog called octreotate. Neuroendocrine tumors have receptors for the hormone somatostatin in over 60% of patients. The tumors therefore will capture the somatostatin as it passes by and of course the radioactive GA-68 bound with it. Although some other tumor types and even some body parts (pituitary gland for instance) have receptors, if you are the lucky patient whose tumors have these receptors, you can get a good picture of where the tumors are by tracking the radiation. The PET cameras take pictures of the radiation in the body. GA-68 scans have been used in Europe for over 15 years already. Apparently, they were not considered profitable enough to develop, test, and get approval for in the U.S. until recently.
You are probably familiar with CT (xray Computed Tomography) scans. These take three dimensional xrays of the body. The new PET machines are actually PET/CT machines. They take the PET and the CT at the same time.
Before now the best we had for neuroendocrine tumors were CT scans, MRIs, and octreoscans which were a much weaker version of the GA-68 type of scan without the attached CT scan.
After my diagnosis, I have had more than six octreoscans (about one per year) and a CT scan every six months and one or two MRIs. This picture shows the difference between the GA-68 and the octreoscan.
What a difference. The black dots are areas of high “uptake” meaning attachment to the marker. My first radiologist showed me my first octreoscan and said “‘nuclear medicine’ is sometimes called ‘unclear medicine’!” These are not my scans. They were uploaded to Facebook for an example.
Combining the CT scan and the Netspot PET scan in one picture is even more powerful.
The gallium radiation has a very short life. We patients are given no warnings at all except to drink lots of water so the radiation won’t gather in the kidneys. NOTE: Although the gallium injectable is more radioactive than the indium-111 used in the octreoscan, the patient actually receives less radiation because the gallium-68 isotope has a much shorter life than the indium-111 isotope.
The old octreoscan routine was to wait until the end of my 28 day Sandostatin injection cycle then I had to take a laxative the night before and fast until I was given the injection. After the injection we waited 4 hours, then had about an hour laying flat on my back without moving in the nuclear scanner. The hour long scan was repeated the next day and sometimes even a third and fourth day. I was warned that I would need a doctor’s letter to pass through an airport within 30 days of the injection. What a pain!
The Netspot PET/CT requires no preparation, no laxative, no fasting. It could be given 15 days after the last Sandostatin injection and they asked that you not use an octreotide “rescue” injection for a day. You are given the injection, wait an hour, then climb onto the scanner bed pictured above and lay still for less than 40 minutes. That’s it! Unlike a normal CT scan there are no breathing instructions during the scan (“hold your breath”, “breathe”). The machine is a bit bigger than a CT scan but is open on both ends so there is no claustrophobia.
Edit: 2017-06-05 Like NETs patients, each medical facility is different. My scan was at Rocky Mountain Cancer Center where Dr. Liu works. Someone just told me that a facility in Arizona is telling patients that they must wait 4 to 6 weeks after their Sandostatin injection to get a Netspot scan. Also note that Medicare is paying for these scans but how much is paid and the difficulty of getting approval may depend on your add-on plans. As far as all health insurances, I have heard that the scan part is usually covered (perhaps around $1,000). But the Netspot injection is separate and is much more expensive. That is the part insurance companies are unsure about. Additionally, of course, each medical facility may charge differently for the scans.
NOTE: Josh Mailman who works in the nuclear medicine field and has NETs and is very active in our NETs community shared the searchable map link above and these links:
- Society of Nuclear Medicine and Molecular Imaging Guidelines for GA68 Scan and Patient Prep
- SNNMI NETSPOT™ (gallium Ga 68 dotatate) Reader Training A pdf on how to read the scans.
I am not a doctor or medical person (perhaps a professional patient these days). The above is my “not a doctor” explanation of some very complex things. I hope that it helps and is not incorrect in any substantive way.
May we all have the best possible outcomes,
Cy
Copyright secured by Digiprove © 2017-2019 Cyril Ball
Thank you for this information. I have claustrophobia when in an MRI and need to premeditates. The scheduler told me I wouldn’t experience this in the PET Gallium scan since it’s much bigger. I am delighted but want to make certain this is true. Can anyone comment?
The picture in the blog is accurate. The machine is donut shaped but about 3 to 4 ft. deep. The bed moves in and out. It took my head through and out the other side which is open to the room and back through the machine to just out on the bed side.
Use caution in selecting the medical facility that orders the Netspot prescription used for your scan. The university medical facility where I had my scan done billed over $11,100.00 just for the Netspot prescription. You must get the detailed itemize bill with the codes to see the actual charge for the Netspot kit. That was many thousands of dollars over the acquisition cost of the Netspot prescription. Anybody know the average acquisition cost and/or the usual medical facility markup of the Netspot kit? The scan itself cost about $3,500.00
Thank you for your information, I will be having this scan very soon and feel less nervous about it now, thanks!
LGKB, What was the cost of your Netspot prescription? The university medical facility where I had my scan done billed over $11,100.00 just for the Netspot prescription. The scan itself was about $3,500.00 I’m researching the cost of Netspot prescriptions. Thanks
I had a hospital bill $23,680 for the Indiom -111 isotope used in Oscan. Got a $5000 surprise bill in the mail.
Wow! Thanks for this great information. I have NETs and live in Brazil. I can’t find specialists here. Information is everything!
Appreciate your information. My husband is waiting to get this scan after 3 years post op from pancreactic cancer. Problem we are having is getting it approved thru our cancer center. We live here in south Florida and it is sad that the large local cancer center does not have the prodical set up yet to start doing these importnat scans!! There are numerous location in the state that are hours away!! Hopefully he can get this set up soon and get the diagnosis. Thanks again!!
How can you tell which parts are the tumors by looking at the scan.
I had scan even it shows my kidneys and bladder black in the scan and I am waiting for my appointment so worried.
The scan shows kidneys and bladder black because they are processing the leftover radiation out of your blood stream and into your urine. There is also a gland that will show black (pituitary behind your eyes) but is no problem. You need to have the appointment hopefully with a doctor who has experience reading these. Without training, we patients cannot do it properly.
Have the best possible outcomes.
Thank you very helpful
Thanks for sharing this with us Cy. You explained things in a way we can all understand.
Dr Woltering has scheduled me for a GA 68 scan in October. I appreciate your information and I ‘m hoping he finds my tumor which has been hiding for 5 years.
May you get the best possible pictures.
Cy: thank you for this write up. Clears up alot of questions and you explained it well. this cancer is a learning experience. and to have a wonderful group that informs others what they have gone through. Thank you. and God Bless.
Cy
I’ve had one of these scans and it’s wonderfully detailed, highlighting growth that other scans ‘cannot reach’, and therefore giving medics much batter insight.
I do feel it would be valuable for people to know that considerably higher levels of radioactivity are involved, from the Ga68 material. My hospital used special handling techniques, including a lead-shrouded syringe – and I was told not to be close to any small children for up to 24 hours after the scan, to give the radioactivity time to disperse.
I only mention this so that folks are not alarmed if they undergo this – the procedures that hospitals use are to protect staff who repeatedly handle the radioactive material (which could cause a cumulative effect, if they weren’t protected). I personally experienced no ill-effects whatsoever.
Alan, you are exactly right. These scans are designed and tested to insure that the radioactivity is safe for the patient. As I have said before, my body won’t care how much radiation I get if I die for NETs because I was not scanned enough to find and treat the cancer.
Thanks for sharing!
Thanks Cy for this great explanation…it sure helped me. Thanks again for sharing. I am hoping to get one later this month when I see Dr. Liu
I would like to know where I can find more information on the CA 68 scan and were I could get it done . Thanks for the post.
John Perry, try this web page for information on the GA68 scan:
Carcinoid.org GA-68 PETCT scan
Cy,
Thank you again for your many thoughtful and informative posts.
They are appreciated.
Thanks again Cy, always informative. Do you know whats the cost of Ga68 scan if you have no insurance and is not from the US?
Collie, I only know that the scan costs $3,400 without insurance at the Rocky Mountain Cancer Center. Sorry.