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PRRT at Erasmus Medical Center, Rotterdam, The Netherlands (aka Holland), 2013


You and your oncologist have determined that PRRT (Lutetium 177) treatments are the best option for your neuroendocrine cancer at this time, at Erasmus MC in Rotterdam. Your doctor has provided the nuclear physicians at Erasmus with your pertinent medical records, scans, and test results and you’ve been approved for treatments. You’ll provide two 24 hour urine specimens, and be tested for MRSA, and you’ll receive a tentative date for the first treatment (of four). You’ll receive a confirmation email from one of the doctors at Erasmus once all test results have been reviewed, and are determined to be within treatment parameters.

When the Erasmus physicians confirm your first treatment they will send you several sheets of information, including a list of lodging options , the schedule for your treatment, recommendations for what to bring, and a description of your stay at Erasmus. They will also send you the cost of treatment and payment options, as well as the location and times you are to report at.

I’ve written this guide to provide you with information from my own experience as a PRRT patient at Erasmus. I found going to Europe (my first time) and preparing for this treatment a very daunting prospect, and I hope these tips will be helpful to you.



  • Flights

I flew Delta each time I went over. I chose Delta in part to accumulate as many skymiles as possible, but also because they will waive the $300 change fee if you ever need to reschedule your flights due to medical causes. Your treatment dates at Erasmus are always tentative until you’ve had blood tests and the doctors have determined you meet the necessary standards for each treatment. That means it’s always possible that your treatment may be delayed, and you’ll need to reschedule your flights and other reservations. If you choose to travel on an airline other than Delta, be sure to ask if waiving the change fee is a benefit they can offer you. It’s a nice peace of mind to have. I also recommend that on your flights home you reserve seats that are a bit removed from the rest of the passengers, since you’ll be radioactive. If the flight has a 2 seat aisle option by the windows, that’s perfect.

I flew from Tampa to Atlanta, GA, and from Atlanta to Amsterdam’s Schiphol Airport (9.5 hours). It’s a very long flight, and I recommend travelling at night so you can sleep through it, if possible. Bring your meds, a sleeping mask, and earplugs, and be sure to close your plane window when you’re ready to sleep. Holland is 6 hours ahead of eastern US time, so you’ll arrive there late in the morning, Holland time.

Another thing to consider is wheelchair assistance at the airports. You can request this by calling your airline any time before your flight, or you can do it at the airport as well. I found it most valuable coming home from treatments, when I was very tired and not feeling great.

When you arrive into Amsterdam you’ll find Schiphol is a big airport. There’s usually a large crowd in the area where you’ll get into line to have your passport reviewed. Be sure that you’re in an aisle that‘s for All Passports. They just look at your passport and ask you the purpose of your trip. Once you get through, go straight to Baggage claim. From there you can go downstairs one level to get to the trains.

Leaving Holland to go home is fairly easy. You will have papers from the doctors at Erasmus regarding your radioactivity, but you won’t need those until you get back to the US. If it’s possible for you to fly Sky Priority, I highly recommend it. It will make your passage through the departure area of Schiphol Airport much easier and shorter. They have a special area just for this. I flew out around 1030 in the morning and got home in Florida by 7pm or so, US Eastern time.

When you’re returning and arrive at your first destination airport in the US, you will find – as you approach the Customs area (with your passport and radioactivity papers ready) -- that your radioactivity will set off all the alarms in the area. The customs agents will be looking to see who’s creating the havoc, and I’ve learned to raise my hand to let them know that it’s me. Every airport’s a little different. I’ve been happiest with Atlanta. You will provide your passport to the first agent, and then you’ll get your luggage – under supervision, and then you’ll be ushered into an area for special clearance. This may take some time as they review your radioactivity papers ,identify the lutetium, and do all the paperwork necessary to declare you safe for entry into the country. It helps if you tell them that Lutetium is not on the FDA registration list. Once you get through, you drop your luggage off for your next flight, and find your gate (if you’re travelling further). You’re almost home.

  • Trains

Everyone told me that taking trains in Europe was cheap and easy. What I found was that there are a lot of different train systems – and until you’re familiar with them, it can be pretty confusing. For my purposes, I kept it simple and did the same thing every time. There’s no need to buy train tickets ahead of time on the internet. They’re more expensive that way, and there are plenty of trains available. Just be sure you have some euros before you leave the States, both in small and larger bills. As I stated in the Flight section above, the Schiphol train station is right underneath the Schiphol airport (one level down), so it’s easy to get to. There you will find many automated ticket machines (too hard for me) and a long ticket desk with agents who will help you get what you need. I chose to ride on the Fyra fast train. It’s red and fast and very comfortable. Tell the agent where you’re going (Rotterdam Central Station) and you might (I recommend this) also get return tickets, based on your flight home, date and time. The train ride between Amsterdam and Rotterdam is about 30 minutes, so I found that when I was heading back to the airport to fly home, if I left Rotterdam Central at 8 am, I arrived at Schiphol about 830 – with plenty of time for my 1030 flight. The Fyra tickets cost about 26 euros, round trip, per person. When the agent gives you your tickets he/she’ll tell you what time it leaves, but be sure you ask which track it leaves from (this will be something like 15A, or 18…) You probably won’t have much time so look around and find stairs or an escalator that goes to that track. There’s a header over each of them to guide you. When you get to the track there should be a sign above statingRotterdam Central, or other destination you’re heading for. The trains are generally on time – so you may need to hustle, and ask for assistance from others to get to where you need to be. I learned it was easiest if I approached people and just said “speak English?” and smiled. No one ever declined. The trip on the Fyra from Schiphol to Rotterdam has no other stops, so you’ll enjoy a leisurely half hour train ride through the country, and then arrive at Rotterdam Central – which felt to us like it was in the middle of nowhere. They will announce it, though, in both Dutch and English. You’ll get off the train, go downstairs, and head to the left, to get into Central station, and on to Rotterdam proper.

Walk straight ahead and you’ll go through a turnstile, and see a glassed in entrance/exit area ahead. To your left you’ll find a service area where you can purchase tickets for various kinds of transport. On our first trip we went there to find out which tram to take to get to our hotel, but after that we walked straight over to the tram stop and bought our tickets on the tram.

  • Trams, taxis, and buses

Tram 4 will take you from the train station area to the stop for Hotel van Walsum, and costs 3 euros per person. You won’t need exact change, but you will want some small bills or coins on hand. There’s always someone working on the tram who can answer your questions and help you find your stop. To get to Hotel van Walsum, you’ll get off tram 4 at the intersection of Mathenesserlaan and Nieuwe Binnenweg. As you get off, be careful you don’t step right into the bike path. Everyone bikes there, and they have wide beautiful bike paths everywhere, but you don’t want to get in the way of bikers. Turn right onto Mathenesserlaan and Hotel Van Walsum is just a few minutes away, on the right. Look for a modest Hotel sign.

Trams run on schedule, are clean and comfortable, and are a nice way to get to places too far to walk to. Schedules are different, however, on Sunday, so ask ahead for any mode of travel you’re planning ahead for. The desk clerks at van Walsum went out of their way to provide me with this kind of information.

We never rode on the buses, but they are plentiful.

Taxis are very similar to ones in the US. We found that since we usually left the hotel to fly home on early Sunday mornings – before the tram was running - it was best to ask the hotel to call a taxi to take us to the train station. The charge each time was 6 or 7 euros, plus tip, and they dropped us off right at the station, so we didn’t have to walk much at all.



Rotterdam is a “working town”, unlike the glitzy Amsterdam. It has one of the largest harbors in the world, and it’s worth seeing. I found the people incredibly friendly and helpful. Most can and will speak English quite well. Rotterdam also has some beautiful parks, and you’ll find that everyone goes about their business at a much more relaxed pace than we do here in the States. I never got the impression that anyone was competing, or in a rush, or trying to impress me. Meals in restaurants are served and eaten at a very leisurely pace, and you may have to ask for your bill if you need to get somewhere.

You’ll be given a map of the city when you check into your hotel. While staying at Hotel Van Walsum, I found it easiest to divide the city into that intersection of the 2 main streets (Mathenesserlaan and Nieuwe Binnenweg) with my hotel more or less at its center. We couldn’t begin to pronounce the street names properly, so we gave them nicknames to remember them. Mathenesserlaan is the street where Hotel van Walsum is, and where you begin walking to Erasmus, and Nieuwe Binnenweg has all the shops, restaurants, delis, and bakeries, and the banks. There is a large modern shopping mecca on Nieuwe Binnenweg, within walking distance as well.


There are many hotels in Rotterdam, to suit every taste, so look around online to choose one you like. I chose Hotel Van Walsum because it’s an old fashioned and comfortable hotel, family owned, and right in the center of everything we wanted and needed. It’s also reasonably priced, and the owners and all the front desk staff treated me with warmth and grace, and never got tired of my clumsy efforts at speaking in Dutch, or English, or of our thousand and one questions. It’s a 10-12 minute walk from Van Walsum to Erasmus. This hotel also has an outstanding buffet breakfast, that can be included with the room, and if you take your meal to the outside patio you’ll find a friendly and handsome cat to keep you company, if you like animals. The hotel rooms also have a small refrigerator, a safe, and an electronic kettle. I recommend booking your stay directly with them at


Rotterdam has a wide variety of restaurants to choose from, unforgettable delis, and at least 3 grocery stores in the center of town. Since I was on a limited budget, I combined some meals out with picking up food from delis and the grocery stores and bakeries. All the ones we used, and loved were on Nieuwe Binnenweg. The owners of the delis and restaurants became friends, and a part of my cancer journey.

Grocery Stores: The Coop, Nieuwe Binnenweg 24, is a good all-around grocery store

                             EkoPlaza, at Nieuwe Binnenweg 240 - slightly more upscale

Delis:                  I loved the French deli, Chez Moi at Nieuwe Binnenweg 302B,

                             and an Italian one La Zia Maria – Nieuwe Binnenweg 222A.

Restaurants: My two favorite restaurants are Veel Soeps, Nieuwe Binnenweg 125h, (nice fruit/veg                      store next to it, too)

                       and Sphaghettata, Nieuwe Binnenweg 151

Sample your way around the bakeries, cheese shops, cafes, etc., and all the other restaurants.

The grocery stores are very handy, but unless you speak fluent Dutch, be prepared to be confused as you make your selections from a wide variety of items labelled in Dutch. Dairy products were the most baffling for me, as I tried to find the Dutch version of “half and half” for my coffee. To the best of my knowledge no such thing exists, and “koffee melk “is evaporated milk. I learned to use melk, and it’s available as it is here, in many varieties of fat content.

Let Rotterdam spoil you with its delicious food, but keep your expectations low for hospital meals. I found their lunches pretty good, but brought my own food for breakfasts and the one dinner you’ll be there for. I brought things like croissants, fresh fruit, and yogurts – and of course chocolate.

Items to take

Erasmus provides you with a list of things you’ll need/want while getting your treatment, but there are a few other things I found very helpful to have on your trip.

Sleeping mask and earplugs for your flights.

A face mask in case you are seated near someone with a cold or other potentially contagious infection

A small soap bar and shower cap for the hospital.

A European plug converter (the hotel has several to borrow, but they’re only about $7, and nice to have your own)

A Water container – you’ll want to be sure you drink a lot, from the time you leave home until you get back

A notepad – for notes.

A reading light – if you like to read. You never know what kind of lamp your hotel room will have

Stool softeners (Senokot S) and a painkiller. Both of these just in case you need them.


Telephone – Since I had an I-phone, I was able to text anyone else with an IPhone for free, but Verizon would have charged me to text anyone else. I did not attempt to call anyone, except locally on the landline phones in the hotel and at Erasmus. I recommend you contact your provider and discuss your options/charges, settings, etc. on your mobile phone before leaving the country.

Email – Wi-Fi is widely available in Rotterdam, but it’s not everywhere. It’s very good at Erasmus, and I found this the easiest way to communicate with people back home. If you have an iPad or other tablet, I recommend bringing it. Netflix however is not available over there.

Talking in Holland, television, etc. – Talking in Rotterdam is pretty easy. Almost everyone speaks English well. There are many apps you can put on your phone for translations, especially for understanding written Dutch -- as in the food stores, etc. , and there are even ones that will translate as you speak.

Pronunciation of Dutch words is tricky, so it’s good to hear them before you start saying them. You’ll be pleasantly surprised at how many words are very similar to English ones, such as hallo, pardon, sorry, and goed – pronounced khoot – for good. Thank you is dahnk yuh vehl (informal) or dahnk ew vehl (formal) and yes is Ja (yah) - no is nee (nay). Any effort you make will be appreciated.

Many of the television programs are in English, with Dutch subtitles, and I found BBC in English in the evening hours. Don’t expect to find the programs we’re used to in the US, though.


Erasmus Medical Center

Erasmus Medical Center is hard to miss, since it’s a very tall building. Just look up – from anywhere in Rotterdam - for a big white tall building with Erasmus across the top. It’s about a 10-12 minute walk from Hotel Van Walsum. As you walk there you’ll note that there are actually several Erasmus sites, identified by their locations. Erasmus MC is Hoofdingang. You’ll know you’re there when you see a picture/painting of a woman covering the entire wall of the building next to the entrance.

To get to Erasmus from Hotel Van Walsum, you’ll exit the lobby and turn left onto Mathenesserlaan. Go straight through the intersection with Nieuwe Binnenweg and continue until your reach the intersection with Rochussenstraat. Cross the street and turn right. Walk until Gravendijkwal (not well marked, but a major intersection), and turn left. Walk straight and you’ll pass the building size picture of the woman and a whole lot of parked bicycles before coming to the entrance to Erasmus MC.


Treatment is usually given on Thursdays, but the day before (Wed) you’ll go to the hospital at the time given to you in your confirmation letter, to the Nuclear Dept., where you’ll meet Dianna or another nurse.

To get there, go into the Erasmus entrance and walk straight back, turn left. You’ll pass a Starbucks on the left and go through some glass doors. Turn left and then to the right and you’ll see some small elevators (just for people) called personlifts. Go to the 2nd floor and turn left into the V dept. Walk back until you come to double doors ( push the button on the right wall) , and you’ll find yourself in the waiting room where Dianna will come out and call you. She’ll draw your blood, get your urine specimen, and take your weight and vitals. Dianna is fun and upbeat, and will put you at ease.  On your first treatment, you’ll next meet with one of the doctors to discuss the treatment, and ask any questions you have. After this, you’ll go downstairs to the Billing Dept. (next to the Starbucks) and ask for Gino. He’ll work with you to pay for your treatment. He’s really nice too. Plan on spending about a half day that first time at the hospital doing all this. There’s a cafeteria there, as well as the Starbucks, if you want to get something to eat or drink. This is also a good time to walk downstairs to the SV nuclear ward, which you’ll be reporting to the next morning for treatment.

On Thursday, you’ll arrive at the hospital at the time they’ve told you to, and go straight to the SV Nuclear ward, in the basement. Dianna or someone else will give you a tour and show you your room, where you can put your things away and get comfortable. You may have a single room, or you may share one with a roommate. There are usually 8 patients in the ward. If you have a companion with you they can stay there with you until the doctors begin to administer the Lutetium (sometime around noon). The treatment itself takes 4-5 hours, and is not painful, but you will need to keep your arm with the IV in it still to keep the infusion flowing. You can read or nap, or watch television, and the doctors and nurses will be in and out, tending to you. At this time you are officially radioactive, so they will be there for you, but no more than necessary.

On Friday morning you will go – in two different groups – to have a lutetium scan done. It takes about 20 minutes, and is painless. When you get back to your room that’s a good time to begin packing your things for your discharge. Your last activities there all happen pretty quickly, and it’s good to have your packing done. Late morning through lunchtime, you will have an interview with one of the doctors to review your blood tests, lutetium scan, and how you’re feeling. He’ll give you nausea meds if needed. After this, you’ll each have your radioactivity measured, and letters will be written for your transportation home. If you’re flying, know before this how many flights you’ll have, and how many hours each will be. This information will be calculated with your radioactivity in the letters they give you. After this, you’ll be allowed to leave the hospital. Remember you are radioactive, and do your best to maintain at least a meter’s distance from anyone under 60 yrs., and especially children under 10 and pregnant women, for the number of days they stipulate.


Each patient’s response to the treatment, and their recovery is different, which is why the doctor asks you to stay in town over the weekend after your first treatment. In talking with other patients, and in my own experience, I learned that the two weeks afterward are when you are most likely to have some symptoms. I had great fatigue the first several days after each treatment, and then it would come and go. I recommend keeping your activities and plans light, and rest a lot. Many of the Dutch patients go back to work after the first few days, but I wouldn’t want to. I also had nausea each time, for 4-5 days afterwards, but most of my fellow patients didn’t. The medication the doctors gave me was very helpful.

Your appetite may be different for a while after treatment, and you’ll want to be gentle with yourself. Fresh fruit, and plain foods like unbuttered toast and oatmeal and tea worked well for me, and then I eased gradually back into my normal eating pattern.

Health Notes

Drink lots of water, beginning on your first day of travel. Take every drink they offer you on your flights. I found that my usual chronic diarrhea became constipation in Europe, although the doctors told me diarrhea is a more common reaction to the lutetium. Since you won’t know until you’re there, I recommend taking a stool softener with you (Senokot S is especially good), in case you need it. It’s also advisable to take pain meds with you, just in case you need them.

You’ll need to take your Octreotide subcutaneous shots with you on your trip, and I found it easiest to load the syringes from home, and take them in a hard case in my carry on (I used a hard eyeglass case). As soon as I checked into the hotel, I put them in the refrigerator, and stored my used needles in there as well until I could safely dispose of them.

Be sure you stop the octreotide subq shots 24 hours before your treatment at Erasmus begins.

You’ll resume your subcutaneous octreotide injections the evening of your discharge day, and the doctors will advise you to continue using them until a week after you get your Sandostatin LAR injection back home.

The doctors will want you to get your Sandostatin LAR injection as quickly after your treatment as possible, so as soon as the Erasmus doctors confirm each treatment, contact your oncologist and make arrangements to get the Sando upon your return.



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.