We (Colorado NETs Support Group) had our quarterly meeting yesterday. There were twelve attendees. Two of the attendees were new to our meetings.
We had no speaker, so we all spoke. It was a sharing meeting. Each person shared their history and experiences with the disease as much as they cared to share. There was an amazing amount of information about the disease, the treatments, the patient’s experience.
The value of such meetings is immense! Each of us could comment on how hard it is to experience a disease when no one believes you nor can medical people properly diagnose it for years. Even after a proper diagnosis, it can be years before you meet someone with the disease and a shared experience. Because the tumors often secrete hormones that cause us to look well externally, it can be difficult to convince others that we feel terrible internally.
A sharing meeting allows us to understand that all of us go through these problems…
And we survive! One of our members yesterday was diagnosed 40 years ago! The sharing allows us to talk to people with shared problems and I find it to be cathartic.
At the end of the meeting, we had veggie snacks, brownies, pumpkin pie and drinks. Many thanks to those who provided these refreshments. Also, thanks to Presbyterian/St. Luke’s Hospital for providing a conference room for the meeting. That is quite important because we are not an official non-profit and we do not collect dues.
Again. thanks to all and
May we all have the best possible outcomes.
An informational NET meeting will be held Saturday, February 23 2019. Time: 12:00 to 4:00
9755 E. Girard Ave. Denver, CO 80231
Hampden Branch/Denver Public Library.
Our guest speaker: Pamela Gaytan BSN RN, Clinical Nurse Manager Lexicon Pharmaceuticals. She was Dr. Eric Liu’s former nurse. She has worked with NET patients. NET doctors all over the country. Her knowledge, experience, empathy and compassion for the NET community will make this meeting invaluable to NET patients, caretakers, and anyone wanting to learn more about Neuroendocrine Cancer.
ALL ARE WELCOME…
For more information please contact: firstname.lastname@example.org
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,