Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi people, we are back from Germany last night, it was the 4th laser surgery there for Ivan. He is doing good and his recovery is going on very well. Our trip was good as well, our flight was with Lufthansa going Vancouver - Frankfurt - Dresden only in 13 hours overall. We did not stay anywhere in the beginning of the trip as we usually do - to see some sights - as we had some other plans here in Vancouver before we went. So we arrived directly in the hospital on Monday 3 PM and were checked into the hospital private room (Ivan) and a small room # 3.3 in the attic of the admin building for me (I was very happy to get it again as it is right across from the building where Ivan was. makes it really easy to go at night or early morning). So if anyone have any Q about this surgery - ask away here so it will be avail. for the other people to see later if they need it.

Hi Olga, Glad to know that you are back home after Ivan's successful surgery.

I'm sharing some info that might be useful for anyone heading to Coswig for a thoracotomy. Olga, 'F', Kathy please feel free to correct/add to it, I have just collated your inputs. Ivan's day by day description of his thoracotomy experience and http://www.geocities.com/laserlungsurgery/ are other good resources.

1)Cost : EUR 11,000 (to be paid in advance either by a bank transfer or a check issued in euros on arrival) + Approx EUR 2,500 ( this varies depending on the optional services chosen, first surgery or redo, complications if any )

2)Optional services :
a.If the option physician is selected, the patient's treatment will be undertaken by the head physician. This service is, however, not limited to just one specific head physician of the three head physicians the hospital has. This means if the head physician of the surgical unit consults the head physician of the intensive care unit, and/or the head physician of internal medicine, then these two are also entitled to charge their services separately. The prices for these services are offers - thus, they can be individually negotiated with the physicians themselves.
b.Separate accommodation means a single room for EUR 39.64 per night. In addition, the service also includes up to 2 liters of nonalcoholic beverages per day, one (German) daily newspaper, and fresh towels every day.

3)Duration of stay for the surgery: About 3 weeks
If there are bilateral lung nodules, nodules are all over both lungs and size of nodules are similar on both lungs, the right lung is generally operated first. The patient will have to go again for the second surgery(on the left lung) around 6 weeks later.

4)Accommodation for accompanying persons: Guest rooms in the administration building costs EUR 18 – 25, however, you have to provide for your own meals. It is also possible to eat at the hospital for EUR 12.50 EUR per day. Otherwise it is also possible to stay overnight in the patient room for EUR 45.00 per night which includes meals from the hospital kitchen. However, this offer is not available in the intensive care unit. It would be difficult to bring young children along because they wouldn’t be allowed in the ICU.

5)Internet facility: There is a coin operated access terminal on the ground floor after you pass the elevator across the vending machine (that sells coffee). The cost is 2 Euro per hour, it is a little slow though. You can get coins from the receptionist. Just show her the money and say "internet".

6)Clothes, laundry facility: The patient can wear the reg. clothes in the hospital except the ICU area for a few days after the surgery. Since they have to attend the pre- and after surgery rehab physio and classes, we found the quick drying sport clothing to be more convenient, Ivan had a few shorts and a few T-shirts and summer sport sandals with the removable backings in place of the slippers. Also it is good to have a bottomed shirt to wear it with the draining tubes in the side after the surgery. You can wash the underwear and T-shorts by hand and dry them on a heated side board in the washroom. The laundry service is provided for the cost a few Euro per a load of washing and per a load of drying, I did not use it.

Olga,

What does the pathology study say ? I assume they would study all resected nodules. Do they give samples in paraffin blocks to take home ?
From Ivan's experience, was there anything that you would suggest which made the pain less and/or recovery easier ?

There is a pathology report after the surgery but unfortunately it is in German (I can read it). Dr.Rolle can write a summary letter in English before of the discharge where the pathology report is also given a summary. Ivan's report from the last surgery listed first all the specimens removed with the size, location and then the content of the specimens with the corresponding numbers - what was found in the specimen by the pathologist. 3 of 16 Ivan's lung mets removed this time were found to be not the metastases - two smaller ones were necrotic tissue and 1 bigger one was a scar tissue. Since Ivan was never under the any treatment, we thought that this 2 small mets that are the necrotic tissue are the remaining of the burned on the spot metastases from the 3.5 years ago surgery. They give samples in paraffin blocks to take home but you have to request it in advance and write a written request for its release to you to take it by hand to your home treatment facility so they have a time to prepare them. There was no problem with the border crossing at the airport with the tumor blocks as the customs declaration didn't even have an option for declaring them.

Other comments:
Re. 3) Duration of stay for the surgery: About 3 weeks - I would say that it should be two weeks from the date of the surgery, means that it is usually done on Wed or Thu you should plan for two weeks from that day. When buying the flight tickets pay attention to the exchange conditions. Our flight was with the Lufthansa with the exchange fee pf $150 per a ticket.
Re. pain control. They do an epidural anesthesia but in some cases it could not be done due to the anatomic specifics of the spinal cord. Overall they care a lot about the pain and it is done by the reason - when there is a pain the patient restricts the breathing and it slows down the recovery and limits the rehab activities, so communicate with the nursing staff if the pain is not controlled but be aware that there are some problem associated with the overdose as well, for example some vomiting immediately after the surgery is a very common thing, if you are there take a tray and be prepared. Last time Ivan had an overdose on a day 3 and it was very bad experience for him with the hallucinations and bad feelings so we paid very close attention this time to trying to stay at as minimal pain killers as possible without sacrificing the pain control.
Tell your husband to attend the pre-surgery classes and inhalations as it will be easier to start attending them after the surgery when he is familiar with the procedure. He needs to stretch the hand by lifting it up immediately after the surgery when the pain is heavily blocked so the scars will not form in a way restricting the movements - it will be harder to stretch them on the smaller painkillers dose later. A lot of pain after the surgery is from the ribs spreading and there are areas on the spine that are painful, when massaged it gets easier.
There is a lot of flowering going on this time of year in Coswig as the hospital is located in a park with a lot of grasses and bushes so watch for the allergy, tell to the doctors if any itching or nose running is starting. It is very important to know that a hard sneezing can tear the inside stitching - but the suppressed sneezing might be as equally bad.

Arch wrote:Olga,

What does the pathology study say ? I assume they would study all resected nodules. Do they give samples in paraffin blocks to take home ?
From Ivan's experience, was there anything that you would suggest which made the pain less and/or recovery easier ?

Pain is really hit or miss. You just have to find some pain killers which work well for you.

I did touch on recovery process in my day by day. Now that you brought it up explicitly, I think I should write a few paragraphs on recovery specifically. I have learned a lot on how best to proceed with it, and I think I have a fairly good idea of what you should and shouldn't do.