By Josh Mailman
Being a NET patient usually means some amount of travel for our care. While the pandemic has negatively impacted almost every aspect of our lives, it has rapidly advanced the adoption of telemedicine visits which have allowed many of us to have visits with a NET specialist we might have had to travel hours via car or plane to see. This has enabled some of us to receive second opinions that we have might not even consider due to the time and cost involved.
This was not always the case, especially when contemplating Peptide Receptor Radionuclide Therapy (PRRT). Prior to Lutathera being approved in Europe in 2017 and the US shortly after in 2018, PRRT was only available at a limited number of centers around the world based on the practice of medicine or compassionate care. In 2009 I was able to access PRRT treatment in Europe, having no other treatment options at the time in the US. Since then, I have traveled to Germany several more times, including in 2020, for treatment and follow-up. Given my success in navigating international travel for treatment, so many others reached out to me for information on PRRT and how to manage traveling for PRRT therapy. I created PRRTInfo.org to help other patients.
What would be a reason to consider treatment overseas given that most PRRT treatments around the world are done with some form of Lu177? There are several reasons that you and your care team might consider it. While Lu177 Dotatate is predominant around the world, there are centers that may use different isotopes (Y90 or Alpha) which may be beneficial, depending on the extent of your disease. Other centers may offer clinical trials or compassionate use of PRRT with a combination of other agents not currently offered in the US. Another reason could be the cost of treatment. If PRRT is not approved by your insurance provider, it is possible it could be cost-prohibitive in the US, but may cost considerably less at some centers overseas. Traveling may enable you to receive treatment there that you may not otherwise be able to afford in the US.
As with many things related to NETS there are no absolute answers. It is fortunate that for the majority of patients in the US, advice and treatments are readily available without traveling out of the country. Traveling overseas for PRRT may still be an option for those in special circumstances but should only be contemplated after a discussion with your medical team.