Resources

In this section you will find artilces and links that our support group finds useful. We also maintain a lisiting of Books of Interest.

Please remember, this website and our support group is run by patients and caregivers not medical professional and as such any information presented here or in our support group should be verified and discussed with your medical team. 

421ga68usThis search tool/map is to help patients and physicians identify which centers are currently offering Ga68 PET/CT, PET/MRI and PRRT for either Neuroendocrine Tumors or Prostate Cancer. 

We have included some trial locations as well. For the most up to date trial information please see clinicaltrials.gov.

The MAP image is not a current image as data is updated weekly.

This tool is not a recommendation for treatment or diagnostic test.

Please work with your physician to determine if this diagnostic test is correct for you.

As of June 1, 2016 the FDA approved Ga68 DotaTate Scan (NETSPOT (tm)) for Neuroendocrine Tumors. 

Before you go for your scan confirm how the scan will be paid for.  Medicare does provide coverage for NETSPOT but not all private insurance does. PLEASE confirm coverage with insurer prior to the scan.

This tool is offered as a public service - to inform us of inaccuracies, new locations or provide us contact information for a location - please This email address is being protected from spambots. You need JavaScript enabled to view it. 

If you like this service, please consider donating to NorCal CarciNET so we can continue to provide and maintain our services.

Theranostics

To learn more about Ga68 and Theranostics, please visit our video channel from the 3rd Theranostics World Congress.

To learn about how to read a NETSPOT image, click here for SNMMI NETSPOT reader training. Please note the reader training requires registration at the SNMMI website.

 To use the tool - please click here or on the MAP image.  You will be presented with a search tool.  You may enter search information or leave it blank. Once you have done this, click on the select button at the bottom of the page. 

The results will be presented in table form - if you wish to map the centers - select Map these contacts above the Name column.


 

By Myna - NorCal CarciNET Community Member

I have neuroendocrine cancer, a rare type of cancer that is chemo resistant with very few treatment options.

I went to Switzerland twice in 2013 for (PRRT). A special radiation treatment done in Europe but not currently available in the USA. It's been done there for over ten years, is well tolerated and a big help.
My tumors didn't grow for a year and a half.

I fought with Blue Shield HMO for reimbursement for that entire year and a half. They kept sending denial letters saying "chemo wasn't an emergency". After exhausting my appeals with Blue Shield, I went to the State and asked for an "Independent Medical Review". I sent in all my documents with a personal letter explaining that it was not chemo. I sent a letter on PRRT that the hospital in Switzerland had given to me. And pointed out that if I had breast cancer, I'd have chemo and Blue Shield wouldn't have blinked.

My Blue Shield HMO says they only pay for "emergency" treatments overseas. But the State of California defines "urgently needed services" as those necessary to prevent serious deteriorating of the health of a patient, resulting from an unforeseen illness, injury, or complication of an existing condition, including pregnancy, for which treatment cannot be delayed until the enrollee returns to the plan's service area."

They determined the PRRT treatment met the "prudent layperson criteria for urgently needed services"

The State sent my appeal to a radiologist who did his own research on my cancer and the treatment. His response was "Any prudent person would do what she did".

So they gave Blue Shield 5 days to pay. Three days later I had a check.

The State's Independent Medical Review is FINAL. So don't go there, until you have reached the end of your appeals with the insurer directly.

Good Luck

For the second year in a row, NorCal CarciNET Community and the Society of Nuclear Medicine and Molecular Imaging (SNMMI) held a patient education day during the SNMMI's Annual Meeting. The program took place on June 8th and began with three (3) general lectures about the definition of nuclear medicine and molecular imaging, safety of nuclear medicine, the value of patient and physician partnerships in care management. The afternoon concluded with breakout sessions focused on hot topics in colon cancer, prostate cancer, thyroid diseases, and neuroendocrine tumors. The total number of attendees was 120 with over 50 attending the NET breakout. To see the complete program and recordings of the breakout sessions, visit www.snmmi.org. The NET sessions are available below.

sandoFor those needing help with your co-pay for LAR. Eligible Patients Pay No More Than a $25 Co-Pay per Sandostatin® LAR Depot Prescription Novartis Pharmaceuticals Corporation is committed to ensuring patient access to Sandostatin® LAR Depot (octreotide acetate for injectable suspension). With the Sandostatin LAR Depot Co-pay Card, eligible patients' co-pay may be no more than $25 per Sandostatin LAR Depot prescription. Novartis Pharmaceuticals Corporation will pay the remainder of the co-pay for their Sandostatin LAR Depot: For commercially insured patients, up to $9600 per calendar year. For cash patients, up to $800 per prescription and $9600 per calendar year. Get the details from

Novarti's website by clicking here.

Pancreatic Neuroendocrine Tumor Diagnosis Challenges - for more information click here.
Moderator, Matthew H. Kulke, MD, introduces a panel discussion focused on the treatment of patients with pancreatic neuroendocrine tumors, with a particular emphasis on the effective sequencing of treatment options. The discussion includes expert perspectives from Diane Reidy-Lagunes, MD, MS, Rodney F. Pommier, MD, and Jonathan R. Strosberg, MD.

 

Pathologic Classification of Neuroendocrine Tumors
Panelists: Matthew H. Kulke, MD, Dana-Farber; Rodney F. Pommier, MD, OHSU; Diane Reidy-Lagunes, MD, MS, MSK; Jonathan Strosberg, MD, Moffitt

At the time of diagnosis, it is essential to ascertain the grade for neuroendocrine tumors (NETs), since response in high-grade disease is substantially inferior, notes Rodney F. Pommier, MD. This can be accomplishing using mitotic counts and the Ki-67 proliferation marker. In general, a mitotic count less than 10 is characterized as low grade, between 10 and 20 is considered intermediate grade, and greater than 20 is indicated as a high-grade tumor. In general, patients with high-grade tumors receive treatment with platinum-based chemotherapy.

In addition to markers, pathologists examine cellular differentiation, suggests Diane Reidy-Lagunes, MD, MS. For well-differentiated tumors, the Ki-67 or mitotic counts are utilized to further determine the correct grade. Traditionally, a Ki-67 above 20% indicated a high-grade tumor. However, recent data suggest that a Ki-67 greater than 55% may be a more accurate indicator of poor prognosis, Reidy-Lagunes notes.

Panelists agree these classification systems have not yet been perfected. To adjust for this, Matthew H. Kulke, MD, suggests a certain degree of clinical judgment is needed to determine whether a patient is a good candidate for platinum-based therapy. To help with this process, Reidy-Lagunes recommends utilizing an octreotide scan. If positive, patients with a high Ki-67 do not usually respond to platinum-based therapy

 

 

We get questions all the time about medical alert bracelets, where to find them and what to engrave on them.

There are several types - engraved with a few lines of information, interactive with information and a link or a phone number to a service that will give a more detailed version of your medical information and USB bracelet that will have the information on the USB drive.