Paying for your treatments

   Most medical insurances will not cover PRRT, because it is not FDA approved. It is considered experimental or investigational. Medicare only covers medical expenses incurred within the United States, and secondary (Medigap) insurances rarely cover anything that Medicare denies. The one insurance that I’m aware of that does sometimes pay for these treatments is Blue Cross. Some patients have appealed BC/BS denials of coverage, and succeeded in getting them to pay for the services. I’ve also heard that some people have been covered for their travel expenses. Be aware, however, that you will probably be expected by Erasmus to pay for your treatments out of pocket while you’re working with your insurance. For more information on this subject, go to Lucy Wiley’s blog, and enter PRRT coverage in the Search bar. Scroll down until you get to Insurance Coverage for PRRT. Another good source of information and support is the email listing at the website. You can go to the Carcinoid cancer selection and sign up for the email listing. It’s a network of NET patients and moderated by a NET physician, Dr Woltering, and several other NET savvy people. They have archives you can search through for messages on any subject, including PRRT insurance coverage.

The treatments are 5500 euros each at this time (Dec 2013) and you will pay for each treatment prior to getting it. Along with your confirmation letter, you will receive a number of ways to pay. I chose to pay by credit cards and waited until I was at Erasmus to do it. If you use a credit card (s), I recommend using one that doesn’t charge you a fee for international transactions (Capital One is good for this), and one that will earn you rewards.

Paying for your travel expenses

The flights are the most expensive item, and my efforts to get some kind of a break were completely unsuccessful. I also found that all the compassionate care free flights for cancer patients are limited to within the United States. Be sure you sign up for your airline’s skymiles reward program, but that too can be frustrating. I had hoped to accumulate enough skymiles to get my 4th flight to Amsterdam for free, but I didn’t get enough. Several friends wanted to give me their skymiles to make up for the difference, but Delta actually charges people to donate their miles to each other. I found it worked best just to save my skymiles for future trips here in the US. I’m not familiar with other airlines’ policies, so if you’re travelling other than Delta, be sure to look into the possibility of others donating air miles directly to you.

My total travel expenses averaged about $5000 per trip, for two people. We watched our expenses closely, and didn’t go anywhere but Rotterdam, but it was a comfortable budget for us.

General Financial concerns

Be sure and take some euros with you. If you need to get some while you’re there, you can use your debit card to access cash. I recommend the ING bank, on Nieuwe Binnenweg, as a safe, easy place to do this. There’s an ATM machine inside, next to the window, that works just like the ones here. I found it worked best to take enough euros on each trip to pay for food, meals, trains and other transportation, and then used my cards only to pay for the treatment and my hotel. This kept my card fees minimal, and protected my identity and accounts. I would take enough euros with me each day to cover my expenses, and leave the rest in the safe in my room.

You’ll want to take as few cards as you can on your trips, and use debit and credit cards with the lowest fee charges. You will also need to call the card company/bank before leaving the country to give them your travel plans. They will release your debit cards to be used only during the dates you tell them. This protects your account.


Another very good source of PRRT information in general is They focus primarily on treatment at Bad Berka in Germany, but the writers are very knowledgeable, and that website is constantly growing and changing.

Know that you’re in good hands. The team of nuclear physicians at Erasmus developed PRRT; this is where it began. They are very dedicated scientists and caring physicians. The more I talked with them and learned about the details of this treatment and how they make it all happen, the more it assured me completely that I was in the right place.