Laser Lung Resection of Solid Tumors - Germany with Dr. Axel Rolle
For certain solid tumors, lung metastases are the main sites for tumor spread. If the primary or first tumor is removed, then long term or even complete remissions can occur if all of visible metastases are completely resected.
The lung is a common site of tumor spread for many cancers including many sarcomas, breast cancer, lung cancer, and colon cancer. If tumor growth in the lungs proceeds unchecked, it can cause death by overwhelming the lung, blocking main airways (bronchi), or invading vital structures (heart, great vessels leading into the heart).
Conventional resection of lung metastases can remove metastases, but only if not all lobes are involved, and even then - only if the surgery would not involve so much lung removal that it would be too debilitating. Conventional surgery removes whole lobes and segments for a single metastasis...so the number of people who qualify for conventional metastasectomy are even fewer than those who qualify for laser resection.
A very detailed website of the laser resection process in Germany is available here:(http://www.geocities.com/laserlungsurgery/). Dr. Rolle is an awesome human being and world class surgeon. We are very thankful he could be our doctor.
We have also added a few details based on our experiences below:
1. Can my lung metastases be removed by laser?
The first step is to send a brief history and copy / CD of a recent chest CT to Dr Rolle at:
Dr. Axel Rolle, phone 0049 352365102
Fackkrankenhaus Coswig GMbH, Neucoswiger StraBe 21, Coswig / Dresden D-01640 Germany.
We have heard that Dr. Rolle accepts only 10% or so of patients because of various reasons. Possible reasons may include widely disseminated (involvement beyond the lung) or too extensive disease (not completely resectable), unresected primary tumor, or frailty of the patient.
2. When will I hear from Dr. Rolle? After fedexing scans, we heard from Dr. Rolle within 1-2 weeks by email. Once accepted, you may proceed to surgery quickly (e.g. "Come to Germany this weekend").
3. How will I get to Germany? If you are coming from the US, you will need a passport. If you need a passport quickly, there is a process for getting a passport in 24 hours. Look for discount airlines. From Vancouver Canada, Condor Air (discount airlines associated with Lufthansa) was recommended to us. We found cheapoair.com to be more convenient from Seattle. They are a travel agency and were sometimes $1000 cheaper than published fares. We flew on Lufthansa and United. Both had changeable airfares (with penalty) if we could not make our return flights because of delays in the hospital. For our daughter's first surgery, our departures were delayed by one week because she had exercise-induced asthma diagnosed and her lung condition needed to be optimized before surgery.
4. Paying for the surgery. Frau Conni Meissner from Administration contacted by email and told us that surgery needed to be prepaid (11,000 Euros) before admission. This was arranged via a transfer through our bank. About one week after the surgery, expect another email from Ms. Meissner that tells you what additional money you will need to transfer. If the side has not been operated on before, it may be about 2500 euros. If it has been operated on before (even non-laser), it may be closer to 5000 euros because of the increased complexity of the surgery.
5. Arrival in Coswig. We took a flight with a stopover in Frankfurt, then arrival at the Dresden airport. Print out the address of the hotel where you will be staying and catch a cab after you have collected your bags. We stayed at Alt Coswiger Hof because it could be booked online in advance and we would not have to go looking for a place to stay at night. There is a little light that come on once you get close to the door. If you come after hours, there is a bell to ring and Mr. or Mrs. Striegler will come down to let you in. If you arrive on a Sunday, we aware that many stores will be closed. At Alt Coswiger Hof a good breakfast is included with the accommodations. Also there is a bakery right next door.
6. Marketing, Banking in Coswig. Electronic Adapters for Germany. Internet Access. In Coswig, we often went to Kaufland (supermarket) for bottled water and snacks. If we really didn't like the meal, we could always make a peanut butter and jelly sandwich. Their strawberry jam seemed better than ours in the States. They also have misc. items such as batteries and housewares. There is an ATM machine at Kaufland.
Our DD took her Nintendo DS and this definitely helped occupy her time. Our friends from Sarcoma Alliance also gifted her with a wonderful scrapbook kit and she worked on making a beautiful bookmark when she was on the mend.
There is also a bank in downtown Coswig near the tram tracks (e.g. we forgot to bring our ATM card found ourselves short of cash because the hotel's credit card machine wasn't working!), but the bank may not be willing to give you an advance without a pin. Thankfully, we were able to obtain a small advance from Conni Meissner.
During the day there are food wagons that sell Chinese food, roasted chicken, etc. if you do not like hospital offerings. There is also a reasonable good Chinese restaurant (Take out OK) located 25 Johannesstrasse called Tsing Tao Haus.
If you have some advance notice and like electronic gadgets (like a laptop with DVD player), buy a electric converter from Amazon (SIMRAN plu adapter). There is no Wifi in Coswig (and no free Wifi at German airports). There is one computer on the groundfloor of the hospital that provides Internet Access (2 Euros per hour). Friends we made through Sarcoma Alliance were much more tech-saavy...they managed to get 2 bars of Wifi in their hospital room using a Satellite card.
7. Admissions. What to Expect Day 1. When you first arrive go to the front desk reception and they can hold your luggage while you wait to meet with Frau Korbel from Admissions. Many of the forms will not have been translated into English. She will ask you whether you want options like the staff anesthesiologist or the chief of Anesthesiology (pay more). The front desk can hold your bags while you speak with her. You will go up to C1 where you will find a small closet and lock box (will fit a laptop).
If you go with a family member, Frau Meissner may be able to arrange for your husband / wife etc. to stay in the hospital pension (top floor of the Administration building). If the patient is a child, one parent can stay in the hospital room or even in the ICU after surgery.
If available, a nurse that speaks English will ask you for your menu preferences. The large meal in Germany is lunch. If you cannot figure out what to order, you can order pizza, hamburger, or chicken salad for the lunchtime meal. We often ordered Brotchen, ham, and cheese for the morning and evening meal. Our daughter did not like fizzy mineral water, so we ordered Oppacher Still Water - and this was the best bottled water like we are used to in the US. If you are able, after you are finished eating, return the tray to the cart by the nurses station. This is another task that in the US is done by the nutrition service - in Germany there is a lot more you are expected to do-yourself. They also collect empty bottles afterwards for recycling - so put empty water bottles in the crates in the TeeKuchen.
The first day usually involves lung function testing, possible bicycle stress test with EKG, and brief meeting with a PT (maybe Sebastian who speaks excellent English) who encourages you to practice with the spirometer every hour and with the breathing machine in the hall (you receive your own connector tube package). The techs in the stress lab unfortunately don't speak much English. If you are female, you may be disconcerted that they do not provide dressing gowns for the stress test - you are expected to bicycle at maximal power without a top on (this is not the usual US way). If you have a blood gas, they may may wipe your ear with something that makes it hurt and feels as if it is burning. If you are a young person, you may not need this - it is especially for older people who may not have good blood circulation in their ears. We had them try it without the creme for our daughter and it was just fine. Other activities - surgeons will come by, internal medicine doctor, chest xray, and possibly you will be told to go to Gymnastik class (there is a preop and postop class) and inhalation therapy (e.g. for asthma inhalers). The class will be conducted in German, but just follow along.
Often you will be told where and when you should go for tests or classes and then you just show up at the right place and time (different from US hospitals where wheelchair transport is required to go anywhere). You are also given a thermometer that you are to use to take your own temperature. If you don't speak German, it is confusing at first - but you will catch on.
The nurses on C1 don't seem to do as many medical things as in US hospitals (e.g. they will offer you tea) - it is more like a rehab hospital. The floors are much quieter than US hospital wards because there are no constantly beeping IV machines and taking blood pressure every 4 hours, and patients are encouraged to come and go when they are not scheduled to be in their rooms (to get exercise). In the summer months, they encouraged us to go outside to the parks on hospital grounds, walk, and breathe the "fresh air". Very different from US urban hospitals!
There is a button in your room by the door that controls the blinds outside. At times custodians or nurses? will come in and dust or sweep. They are very clean there.
You can keep small items in a refrigerator in the Teekuchen (Tea Kitchen). Also there is coffee, hot water, mik, sugar, tea bags, crackers, etc. in there for your use.
The second day before surgery, expect a blood draw in the morning, collect a urine sample, and preop instruction (shaving, given surgical hose, etc.) from the nurse. You are not to eat after lunchtime. They will give a soup for dinner. Afterwards you will have a tap water enema.
You will also meet with the anesthesiologist.
8. Surgery Day: I was allowed to accompany my daughter into the pre-surgical area (change into gown etc.). She had received a sedative pill, received something more from her IV, and then sat up to receive her epidural. It was a bit difficult, so too a while, but I was with her until she fell asleep.
We waited in the general waiting on C1 and they were kind enough to let us be in the operating room when she woke up (she had been disoriented other times waking up from anesthesia). After waking up, she was moved to the ICU (very close - almost an adjacent room) where she was connected to a sliding wall set-up that managed her various infusions. Remarkably she had no pain immediately post-op, but she was still very sleepy and puffy because of the fluids received during surgery. She slept a lot.
We tried to keep track of some of the medications she was on - not always easy because there are some differences in the drugs in the US vs. Germany. K's epidural delivered Naropin or Ropivacaine (great stuff). She also received Keatril or gransitron for nausea, sutanol or salbutamol which was albuterol, Dynastat or Parecoxib (an IV Cox2 inhibitor for 2-3 days post op), Dipidolor (opiate), and Paracetomol which is our Tylenol. For her first surgery they gave her Targin which is a formulation that combines oxycodone with naloxone..supposed to be less constipating, but this really wasn't as good a medication for K...she preferred plain Oxycodone...and we brought from Colace / Docusate from home (now you can buy over-the-counter).
9. Recovering: The first few days are spent in the ICU. There are many nurses that speak English in the ICU, and our anesthesiologist was Dr. KraBler who was chief of service (you may extra if you want the head of the dept) who was mainly responsible for us there. Post-op day (POD) 1, you begin with the physiotherapists...easy things first (moving hands, arms, legs), then over the next few days it will progress to sitting on the side of the bed, then standing, using the commode, and lastly walk to the bathroom. Your appetite might take a while to come back.
The most uncomfortable thing in the first few days is the chest tube. Our daughter said it wasn't really pain, but felt like a cramp in her neck. The only thing that makes it better is their pulling back the tube, or even better - removing it entirely. They will be able to remove that first one usually within the first 2 days...but depends how much it is draining and perhaps what the chest XR shows.
We did tell our DD to put her best face forward when the attendings come around...even if you have been walking long distances and doing a decathalon, if you happen to look tired or sleepy when the attending comes around, they may be reluctant to
K was able to walk to the ICU nurses station by POD 2 or 3...main difficulty was feeling lightheaded.
10. Back to the Floor: Our daughter was able to move to back to C1 on POD 3. She went back with just her IV (antibiotics), 1 chest tube (and a wheeled gizmo that we nicknamed Fido), and epidural catheter. The second chest tube came out on day 5 or 6. And epidural catheter shortly after that.
The rest of your time will be spent working with the spirometer to expand your lungs, going to the post-op physiotherapy classes, and trying to walk more. If you are crossing the Atlantic ocean, it is not recommended that you leave any sooner than 3 weeks after surgery. The flight is long and because it is an airplane, there will be less oxygen at the higher altitude. By 2 weeks postop, you may feel pretty good though, and K was able to take fairly long walks around the full perimeter of the hospital.
That's it! Soon you will be home. We were able to arrange for the pathology slides to be sent to UCLA for additional reading as well as we had molecular profiling done. It may be helpful to make sure you get the pathology report if you have been on some therapy before this (look for necrotic response).
We found the jet lag much worse going back home, but our daughter was essentially be able to go back to school the next week. She was able able to make a low key tour of Dresden (took the train) the last day she was there.