Sunday, 1 June 2014

Experience of Radiotherapy in Germany from the UK

After a great deal of research and visits to GPs I found Gary’s blog and the IDS website and Forum. I have ledderhose in both feet my father also had it and DD, but it never progressed. I chose after many many hours research on RT. Costs in the UK were estimated around £6k for two feet. Germany was £2k for two feet. I had read about Prof S in Hamburg and chose that as my route.
Firstly I emailed him. Great emails and he was responsive (after a wait as he was on holiday!) I sent pictures asked lots of questions and decided on a one day visit for a consultation. Being from the UK I thought this was sensible (although a long day) after reading some people saying not everyone gets treated. A flight was around £75 return from London to Hamburg, travel on the day just 6euro. A great meeting and he advised treatment would be suitable and the beginning of DD was starting in both hands, but advised to do nothing with them not worth treatment just yet.
My trip to Germany was booked shortly after, treatment required 5 working days. I booked in a school holiday so paid the price on flights but I wanted it done ASAP hopefully while the active stage was in progress. Flights from London this time were £160 (double normal) return. As I was keeping this to a treatment not holiday I wanted to be able to cook myself etc. I found an apartment in Niendorf (about 25 minutes train from the centre) this worked out at 360euro for 5 nights. I had a spacious apartment/room with a Bed living area and kitchen all in one, sounds a squash but was very spacious and well worth the money if you are happy with no service, ie no cleaning\bar\reception or shower gels etc. It was perfect for me. It was a very local area English wasn’t widely spoken but most had an understanding and I got by fine (I don’t speak any German).
My First day in the hospital in Hamburg was a little worrying. I got the trains and buses. Bus 292 at stop Foorthkamp stops just metres away from the clinic and the buses trains etc are so efficient, easy also such good value, I paid just 26 euro for a week’s pass any time within greater Hamburg.
When I arrived the girls on reception were very smiley and friendly and spoke Basic English, enough to get by. I was told Prof S was not in that day, I had an appointment booked but he couldn’t be in the clinic. I panicked a little and got worried that I had come all this way and thought he needed to be there for treatment etc. I asked the girls how they will know where to radiate etc as I thought the Prof had to do this. They couldn’t quite understand what i was asking but we got by.
I was then led to a waiting room and then taken to the stairs and told to go down where I can have treatment. This goes down to the (very hi tech looking) Lab. The oncologists there spoke good English. I asked if they knew what to do without the Prof, and he assured me that yes the Prof had left instructions and everything is photo based and the template etc was set. This made me feel a lot better. He really seemed to know what he was doing.
The treatment itself was simple, hop up on the bed and lie face down, position your feet on the rest, they move the bed and the machine electronically to line everything up. I couldn’t really see much as I was facing away and so couldn’t really see all of what was happening. He quickly felt for the lumps, although he had the picture on the screen of the machine, placed a shield over the foot with a template to allow the radiation through to the area of around 12cm. They tell you the radiation will begin, leave the room, a red light goes on, machine beeps and I counted 30 seconds then they rush back in and set up the next foot and repeat, pop your shoes on and you leave! It took literally 3-5 minutes. I felt nothing.
I did worry to begin with about the area to radiate etc but I think Prof S and his team are very experienced and work well together so know what they are doing. The next day I had my meeting and we spoke about everything. I questioned the area of radiation etc and as the previous man said he explained all was done now in a template form for each patient. All was good and I was so happy to speak to someone with such knowledge, in fact it was the first (and only so far) person I have spoken to face to face that knew more than I did about Ledderhose. Such a relief! The Prof is very knowledgeable and friendly and makes you feel at ease.
Treatment was repeated as above for another 4 days, Thursday i had a consultation to discuss everything and how the whole thing has gone, I was then handed all my notes and a letter about treatment received. Sheets were included to make notes on any further nodules on hands and feet.
It’s been just weeks after my first visit so I have no results to show or speak of. In fact currently my nodules are a little more painful and sensitive, this as I can see from the forum is quite normal and I hope it to die down in a couple weeks.
Overall I’m really glad I went to Hamburg, the hospital felt very equipped and modern, I have nothing to compare this too of course but I got a feeling they put a lot of time and money into the place. Technology seemed advanced, such as when you walk into the radiation room there is a big screen that pops up with your picture so it’s the right patient and then the two screens on the large radiation machine pop up with all your details and pictures of the feet, radiated area etc. I left and felt happy with my experience it didn’t really even feel like I was in hospital, everyone was so friendly the prof the team that treated me and even the girls on reception grew to recognise you and were so happy/polite etc.
Hopefully I will report back and in a few months and have some results to speak off.
Finally if anyone is interested the cost for all consultations via email and face to face and all treatment for the whole week was broken down for me and after the rate exchange it came on the credit card as £820, a lot better than I thought! This should be less next time as the initial “treatment plan” and some consultations won’t be needed.
For me the locations in UK I would still need to either drive 4 hours return trip or stay in a hotel so costs would have been a lot more. I must point out there are locations at a slightly cheaper rate but further from me. Also had it only been one foot/hand may have not been too bad to be treated in the UK