Beginnings
Having been diagnosed with low level prostate cancer I followed an active surveillance programme. A second biopsy, however, showed my cancer was developing and had moved to an intermediate risk level. I looked at the options. These included the following:
- Surgery
- External beam radiation therapy (photons)
- Brachytherapy
- HIFU
- Cryotherapy
- Hormone therapy
- Proton beam therapy
Whilst some men receiving these treatments are fortunate and have no significant side effects, many have side effects that are life changing. Brachytherapy for me seemed like the least worst NHS option but this was an academic point because my anatomy meant I was not a suitable candidate for this intervention. The only therapy that seemed to have minimal or no side effects for the vast majority of men treated was pencil beam proton therapy. I had been treated with great kindness by the NHS but proton therapy for prostate cancer was not an approved intervention and was therefore not an NHS funded option.
Prostate Cancer UK was also very forthcoming with information but of course their advice related to treatment provided within the UK. Upon reading an account of two men who knew each other, one of whom was treated with a more common therapy and another with proton therapy, the comment that, in terms of quality of life, the former was “surviving” and the latter was “living” was particularly significant for me as I considered my options.
I did an extensive literature search on the various therapies being used and it was not easy to get clarity on the claims and counter claims within the published research. Evidence based health care uses research evidence to inform decision making and a particular feature of evidence based care is to discard literature that does not deal properly with the question you are seeking to answer. In this case the papers relating to proton therapy were principally looking at scatter beam technology (the system most commonly used in the USA), a therapy that was becoming out of date in consequence of the development of pencil beam technology.
A particularly influential paper was that of an American journalist which was published in the British Medical Journal. This argued that proton therapy was not superior to some alternative therapies but it quickly became apparent to me that it was not dealing with the question I was seeking to answer and was therefore of no use to me.
The question I was seeking to answer was, what are the benefits of pencil beam proton therapy over the alternatives? It soon became apparent from the emerging data on the subject that it was a superior therapy to scatter beam technology and far superior to the other alternatives with significantly less likelihood of major side effects than any of the other treatments.
I then contacted the Proton Therapy Center (PTC) in Prague and was given substantial support and advice whilst I worked through all the issues. I was asked by the PTC to obtain an up-to-date MRI scan (which I obtained using the Cobalt Centre in Cheltenham) and this, together with my relevant NHS records, were sent to Prague for evaluation. I was advised that I was a suitable candidate for proton therapy and needed to commence hormone therapy first.
I began a course of Bicalutamide for two weeks followed by two Prostap hormone injections at three monthly intervals. (In connection with hormone therapy I have been informed that I do not need any further injections and so any side effects are expected to diminish very quickly). The side effects have been slight – some lumps on my face and feet for about two days and some temporary testicular swelling that soon subsided, a minor impact on sexual function, occasional hot flushes, some weight increase round my waist and perhaps a slight diminution of muscle tone in my calves.
My PSA level reduced to 0.22 and at this point I visited Prague for a consultation followed by a second visit in preparation for my treatment. This involved, amongst other things, an MRI scan and a CT scan, a
mould of my abdomen (using a technology that felt like a warm plastic blanket) to ensure accuracy in the delivery of proton beams, dye marks on my hips to ensure the accurate placement of the mould prior to treatment and the painless insertion of three gold seeds into my prostate to facilitate the specific targeting of the organ by the pencil beam, together with a reassuring consultation with the impressive and immensely knowledgeable Medical Director. Following further evaluation of my data and images I was advised to have 21 fractions, which commenced on 7 August 2017.
First Impressions
Well, the staff are very supportive. They know who you are and so many develop a personal way of dealing with you even wishing me a Happy Birthday. I was only met with pleasantness, helpfulness and professionalism. English is spoken by most staff. The Chief Treatment Coordinator speaks perfect English and provides particular support to patients. She is assisted by two other Coordinators, one of whom is American and the other from New Zealand. Nothing is too much trouble. The support is extraordinary. The medical aspect is truly impressive. Treatment processes are only decided with the involvement of a multidisciplinary team of doctors, scientists and technicians. They try to think of everything so I was given a mobile phone, a guide book, a map, a phrasebook and a transport pass for the duration of my stay. I was even met on arrival in Prague on each of my three visits and my unsocial times of arrival were not deemed an inconvenience.
A particular feature of the PTC, beyond the deeply impressive technology in place and the strong atmosphere of professionalism, is the culture of kindness and friendliness that pervades the Center, not least through the work of the extraordinary Treatment Coordinators but also encompassing all the staff I met. I have been treated with exceptional consideration, with every possible issue relating to my comfort and convenience and treatment being thought about. Nothing appears to be too much trouble and really the Center represents humanity in healthcare at its very best.
The Treatment
The treatment I received was very easy. I had a mould taken of my abdomen and markers placed on my hips so that when I received protons I would always have them directed to the same place. The routine was always the same. I would leave the hotel at 10am by hotel transport and I would arrive around 10.15am. The PTC is built on the side of a hill so the reception area is on floor 5 and I would walk across the area to the far side and take the lift to the treatment area on floor 2. I would then go to the patient admin desk and scan the bar code identifier on my wrist band using a bar code reader so that there could be no possibility of mistaken identity in relation to my treatment.
A key element of the treatment involves having an empty bowel and a full bladder to protect these important organs from unnecessary radiation and advice was given about these matters. On my first treatment visit I made the mistake of drinking too much water. 2 cups is quite sufficient, 30 minutes before receiving the protons. I was told this by a senior technical member of staff. Don’t drink vast amounts of water. It becomes painful. My bladder was initially too full and that delayed my first treatment for a couple of hours but I was treated with great kindness and tolerance and subsequently followed instructions carefully.
I got into a routine of arriving at 10.15am for an 11am appointment and drinking two plastic cups of water when I arrived. There is a water fountain on Floor 2. The right hand black button is for still water. (The other one is for fizzy water which you can’t have). The treatment process is always the same. You are taken into a changing room where you take off all your clothes except shirt and underpants and socks. (You are asked to wear briefs and not boxer shorts so that location marks painted on your hips to facilitate treatment are readily visible). You are then taken through a series of rooms and doors into a large treatment room. You are asked to lie on a specially designed table with a protruding guide round which you fit your legs. This is to ensure you are in the correct position. Then the mould of your abdomen is clipped on to ensure you don’t move whilst the protons are being directed into your prostate area. An overhead device is pulled along a track which contains a black square X ray device. Various whistles and bleeps can be heard. These things are not difficult at all. The mould does not cause discomfort or claustrophobia. The staff are unfailingly pleasant and everything is done professionally. An X ray is taken to ensure everything is lined up properly and your bladder and bowel are in safe positions so that they are not adversely affected by the proton treatment. Then there are various other bleeps and whistles and an intermittent soft whispering sound which is the machine directing the proton beam. The table on which you lie is turned round 180 degrees, a further x ray takes place and then protons are beamed on your other side. The whole business only takes a few minutes. It doesn’t hurt in the slightest.
You then get off the table and are taken back to your changing cubicle where after getting dressed you are free to go (unless you need a blood test or a review with a doctor but these too take only a few minutes).
Side Effects
For most men there are few or no side effects. A list of possible side effects is given in the PTC documentation. Owing to the amount of exercise that I had, exploring the streets, squares and hidden corners of old Prague I actually felt fitter at the end of my treatment than at the beginning. I had just two side effects. The first related to my proton treatment and the second to my diet.
My urinary flow diminished considerably and Dr Kubes recommended that I increase my Tamsulosin medication. I have only recently completed my treatment but was reassured that my flow rate will very likely gradually increase and this is already beginning to happen. I have also noticed that for me a warm bath doubles my flow rate and this effect lasts for several hours. (In this connection it is important to remember you cannot have baths during treatment – only showers).
Another side effect which was not caused by proton therapy was that which related to diet. We are advised to have a plain diet and to avoid roughage. This is to reduce the build-up of abdominal wind which has a negative impact on treatment. If you normally have a healthy diet which includes lots of fruit, vegetables and whole foods, the radical change in diet can adversely affect your digestion. In my case I had serious constipation which was a problem. I had been given magnesium oxide powder to help with bowel movement. For me this was not sufficient. So I was prescribed lactulosa medica and given some glycerine suppositories. In addition I had obtained some laxative tablets and micro-enemas as a backup. There can be unpleasant side effects with these things so medical advice would be essential first before taking any of them. We are permitted to eat bananas and peeled apples and if I had eaten plenty of these at the outset I think my own constipation problems could have been largely avoided. As it was, I developed my own routine to ensure I had a bowel movement every morning. It is highly likely that having plenty of bananas and apples will solve this problem but I would recommend you commence the restricted diet a few days before treatment starts so that if you have constipation problems you can manage things rather than panicking about not having an empty bowel.
I never took breakfast before treatment as I wanted to ensure my bowels were as empty as possible before treatment although I am aware some patients do have a light breakfast, based on the premise that it takes several hours to digest your food.
Questions
On my last treatment day I had a final medical consultation and asked a range of questions relating to the clinical decisions that informed my treatment, how to report back to the NHS, future PSA testing, possible future side effects, my diet, physical activity, future care of the prostate and when I can start drinking Czech beer again.
Hotel Castle Residence
The PTC has an arrangement with this hotel for its patients. This is a charming hotel which was once part of a wine estate. For me it was just perfect. The en-suite rooms are comfortable and spacious. It has a swimming pool and there is a restaurant. They have air conditioning which is a boon on hot days. Each room has a fridge too. The staff are friendly and incredibly helpful and English is spoken by most of them. I stayed for over a month. The costs were very reasonable.
Whilst I was not expecting significant side effects from my treatment, the thought that if there were any I could ask for help, was a reassurance. When family or friends came to stay, the hotel was ideal. The restaurant provides pleasant Czech and central European cuisine. The restaurant staff were very considerate to me and always did their best to accommodate to my diet. They serve pleasing Czech wine and of course the Czech beer is unsurpassed. It was a deep sadness to me that owing to my diet I was only allowed a glass on my last day! Nevertheless, I was allowed wine and so the hardship was only relative. Breakfast is served here too although I would only eat this at weekends to ensure my bowels were empty for my treatment. (Bowels again, I am sorry).
A particularly good feature of the hotel is their transport service. They will take you every day to the PTC and pick you up too if you wish. This is a good idea as it will ensure you get to your appointment in plenty of time. I would always be taken to the PTC by the hotel staff but would walk back. It takes about 20 minutes and is a helpful thing to do as we need to have some light exercise. The route is easy. Turn right out of the PTC. After no more than 300 metres you will see a parking area on the right and at its centre a brown painted metal staircase partly obscured by foliage. Descend the staircase, turn right, follow the drive which curves to the left and keep going in a more or less straight line through a residential area until you come to the main road. There are various underpasses as the main road is very busy. Take one of these and keep walking downhill. You will pass Hotel Pawlovnia and just beyond the next bus stop is a path to the right that takes you to the Hotel Castle Residence.
The hotel staff will also take you to the tram stop at Trojska and back. You can get tram tickets from the hotel reception unless you have a transport pass which permits free travel. You need to catch the number 17 into the city centre. Make sure you take the tram that is facing downhill or you could get well and truly lost. Until you get your bearings, alighting at Charles Bridge is a good choice. You will know you are there when the tram goes through a yellow archway with the famous bridge on your right. Get off at the next stop and walk back 500 yards. On your return take the number 17 tram marked Kobylisy. The other 17 doesn’t take you back to Trojska. The trams have electronic displays telling you where you are. If you ring the hotel, an ever-helpful member of staff will pick you up in the hotel transport. Frequently though, I would walk back. On alighting from the tram, walk downhill then turn left. You will go past a park-and-ride car park for the zoo, past a modest sized white painted industrial complex (a cement factory, I believe) on the right and towards a 20 storey residential building with a huge Lenovo sign on the side. Carry on walking through a small wooded area until you come to a road flyover, keep to the left of this and you will see a sign to “Hotel Castle Residence 250 metres”. The rest is easy.
Some Things That Will Make Life Easier
UROLOGICAL TEA
You are given some urological tea to stop burning pain in your urethra and are told to drink a lot of it. It is good advice. I had two little twinges because I wasn’t drinking enough of it. I increased my intake and had no problems thereafter. Initially I thought it tasted a bit like grass cuttings but I really got to like it!
FOOD
Well there is a distinctive Czech and central European cuisine. Dumplings are a particular feature. In Britain we tend just to have dumplings. In the Czech Republic there are 50 or so varieties. The street food can be good and is varied. Ice-cream sellers are everywhere and some ice-creams are delicious. The trdelnik is almost a meal, consisting of a pastry like cone which has been cooked and toasted over a flame or heat source and then filled with ice-cream. I tended to eat well at lunch time and have a light evening meal so that everything was digested before morning to help ensure my bowels would be empty before treatment. (I am sorry but everything really is about bowels and bladders). My light evening meal was a bit boring. White bread and butter with 30% fat cheese. In Czech shops the percentage of fat is marked on the pack. Usually an Edam type cheese. I would have several bananas and a peeled apple and a cup of urological tea.
SHOPS
The nearest shops are little grocery shops typically run by Vietnamese people. (There were close ties between Czechoslovakia and Vietnam in the communist era). Turn left out of the PTC and walk about 500 metres to the big road junction and you will see several shops. You can keep butter and cheese in the fridge in your room.
WCs
If you enjoy Czech beer you will need to know where the WCs are. There are adequate numbers of them and they are signed WC. Most are staffed so take plenty of change. They tend to be clean and 20kc is typical, though some are less. And most cafés and museums have them too.
ENGLISH
Many of the PTC staff can speak English and some are fluent. I had absolutely no problems communicating. In Prague a majority of the people I spoke to had some understanding of English and many had very good English indeed.
TAXIS
Watch out. Some taxi drivers may rip you off but Tick Tack Taxis is totally honest and if you ring them on +420 721 300 300 they will come to you.
PERSONAL SAFETY
I didn’t ever feel insecure (although I was never out very late).
SOME USEFUL NUMBERS
Emergency 112
Emergency medical service number 155
Tick Tack Taxis +420 721 300 300
Hotel Castle Residence +420 283 881 604
TRAFFIC
Having had one or two near misses with trams and a bike not least due to traffic driving on the the right, compounded by the use of islands to separate traffic and medieval street layouts in the ancient centre of Prague, any lack of concentration could result in an accident. My advice is this. Look both ways before crossing any road and keep looking as you cross. And watch out for fast moving bicycles. When you turn a corner, take care. There could be a tram track where you least expect it with a tram hurtling towards you. This happened to me!
TEA
There are many varieties of tea, often served with honey. Earl Grey is commonly served with lemon. I do like the variety. But if you want a British type cuppa then ask for black tea with milk.
And What Of Prague?
After my treatment I would have lunch and then go exploring. And there is plenty to see. So I wandered the ancient streets, I visited museums and galleries, I went to concerts in beautiful baroque churches, I went to the zoo, I took musical boat trips on the Voltava and I even visited a concentration camp – a reminder that history weighs heavily in these lands. Prague ranks with the most beautiful cities in Europe. A writer called Seifert expressed himself in these words:
I walked in the late dusk one day,
Prague looking lovelier than Rome
This dream would never pass away…
A city of towers and spires. Smetana’s city is dominated by the river of his music. The Voltava curves gracefully as it both divides and unifies the city. Its bridges providing the links that turn two communities into one. And all around are evidences of a glorious past.
A sublime mediaeval bridge lined with memorials of past heroes – men and women – speaking to us of great rulers and mediaeval glories and armies and empires.
A newer bridge with winged sentinels.
And even newer bridges – harbingers of 21st century life.
Prague is a symphony of water and stone and brick and wood and stucco – a place of architectural harmony that ranks this city with Venice or Rome. It has a dazzling roofscape of gothic towers and baroque cupolas and ornate buildings in pastel hues decorated with statuary.
A walk across the Charles Bridge transports you into a magical world, past mediaeval towers and embassies and ancient town houses. You can climb the picturesque tower on the far side and get a bird’s eye view of the bridge. Up the hill, past restaurants serving Czech and central European cuisine, and food shops – places to buy a delicious Czech beer or a glass of wine or an ice-cream or a slice of pizza or a baguette or a cup of tea or coffee. Finally you reach Prague Castle – the largest castle complex in the world – with a magnificent cathedral containing wonderful stained glass and extraordinary artefacts.
Look up, look up. Because above eye level there is another magical world of statuary, plaques, decorated buildings, magnificent architecture, mediaeval, Romanesque, Renaissance, baroque, gothic, art deco, modernist. And in the summer light, the varied colours glowing and adding to the atmosphere of architectural extravagance.
And don’t forget the Petrin Tower. A mini Eiffel Tower atop a hill surrounded by landscaped green spaces. You can walk to it or get a cable car and there is a lift inside to the viewing platform which gives spectacular views of red tiled Prague.
And then there is the Strahov Library, a confection of baroque and classicist artistry that exceeds all expectations.
If you want something eccentric well there is plenty to choose from. A grim museum of torture, an ice palace that sells cocktails in a room as cold as the Arctic, highly coloured mosaic seats, a cubist lamp post, the Kafka museum, sculptures of a man and woman – Mary Poppinsesque – apparently floating through the air, attached to umbrellas.
And as we wander the streets we see human statues painted in silver and jugglers and bubble blowers and street food sellers and Aladdin coming out of his lamp, all jostling for a small piece of the action.
Prague Zoo is one of the best in the world with an extraordinary range of animals, a cable car, a road train and lots of places to eat and take refreshments.
You can see Wenceslas Square, scene of so many dramatic events in recent Czech history, really a fine wide boulevard of restaurants and posh shops and affordable shops with the imposing statue of Good King Wenceslas at its head. There is even a Marks and Spencer half way up the square.
And what of art? Well, Prague has a great deal. I visited a wonderful photographic exhibition in Prague Castle – easily the best I have ever seen. I visited the Mucha museum and a separate exhibition of Mucha, Warhol and Dali. I greatly enjoyed an exhibition of Bob Dylan’s art with his music as a backdrop. I visited the National Gallery in Holesovice with a remarkable collection of 19th, 20th and 21st century art which contains paintings of many of the most important artists of the period. It is a collection inspired by the visionary statesman, President Masaryk, whose statue graces the precincts of Prague Castle. And I visited a gallery of Bohemian sculpture also at Holesovice, filled with art students developing their drawing skills.
The music scene is excellent. I went to classical concerts in baroque churches, listened to wonderful organ music in a Romanesque church, enjoyed jazz in Staromestska Namesti and on the Charles Bridge, listened to pop music at an open-air eatery a few hundred yards beyond the Charles Bridge, where I heard someone play Hotel California as skilfully as the Eagles, and there is much else too including opera, people playing unusual folk instruments and impromptu musical happenings in unexpected places,
The city has many echoes of its past. The glorious Charles Bridge, wall plaques in Cyrillic – a reminder of the communist period, a square named after Jan Palach, the Czech martyr, who stood for personal freedom in a time of communist repression, a monument to the brave people who gave everything during the Nazi occupation (memorialised in the film Anthropoid). And we should not forget the brave politician Alexander Dubcek and the courageous writer/politician Vaclav Havel, both of whom are celebrated. You will see many plaques to heroic figures of Czech history. Perhaps the most heroic in recent times are the men and women of Operation Anthropoid who managed to assassinate the monstrous butcher Heydrich and who took shelter in the crypt of the Orthodox Cathedral of St Cyril and Methodius, where there is a museum honouring their memory. There is a statue, just outside the PTC, of three men with outstretched arms, perhaps in the pose they adopted as they halted Heydrich’s car to launch their attack. This statue is located where the ambush happened. And just adjacent to the PTC is an ornate building where Heydrich was taken for treatment and where he died.
And then there is Terezin. Moving, emotionally draining, shocking. I saw the ghosts there and evidence of real and profound human suffering. And a poem by a little boy – mature beyond his years in these words:
A little garden
Fragrant and full of roses,
The path is narrow
And a little boy walks along it.
A little boy. A sweet boy,
Like that growing blossom
When the blossom comes to bloom,
The little boy will be no more.
Terezin, the town, is pleasantly laid out with fine squares and trees and would have been a good place to live but is now tainted by its infamous name.
And there are links to Britain too. Including a monument to the amazingly brave Czech pilots who fought with the RAF in WWII – unveiled by Nicholas Soames, the grandson of Winston Churchill. There are memorials to Sir Nicholas Winton, the heroic British figure who organised the Czech Kindertransport of immortal memory. And we need to remember that Operation Anthropoid was planned in Britain by Czechoslovakian intelligence services and given support by the British Special Operations Executive.
So what of Prague then? It is truly a glorious place. I fell in love with its ancient streets and its iconic river. It is a place I shall never forget. Not least because of the treatment provided by the PTC but also because it is a city of experiences and happenings and encounters that are preserved in my memory. Samuel Johnson once said “Tired of London… tired of life”. The same can be said of Prague.
Emeritus Professor John Lancaster
September 2017
It all started in the spring of 2017. A small swell appeared in my right temple. I thought it was a consequence of being hit. I had no complaints, but decided to consult it with a doctor anyway. And so my “adventure” began.
But fate, or Providence, had prepared for me a nightmarish sequel.
My friend Vlado (Vladimir) was at the hospital with me all the time. His support has been fundamental and helped me maintain my composure and continue to follow my path optimistically.
In early December, I visited the Proton Therapy Center for my initial consultation. From the meeting I had there with Dr. Haas, I realized that there was an opportunity to start proton therapy very quickly. However, I first had to obtain the S2 funding (I could not afford the treatment as self-payer). Both Czech Republic (where the clinic is located) and Bulgaria (where I come from) are EU members and the Bulgarian Health Insurance Fund is able to pay for treatment under this agreement.
Vlado and I arrived to Prague just before New Year’s. We were met at the airport by a car sent from the Proton Therapy Center. Prior to beginning treatment, it was necessary to prepare the radiotherapy plan, fixation mask, etc. This happened on 12/30/2019.
While I was happy I did not suffer a stroke and that the symptoms were not caused by multiple sclerosis, since my family has a history of it, I was scared to learn I had cancer.
Finally, I travelled to Prague for my initial consultation where I was informed about the potential side effects, which were really scary to hear and prepared me for the worst. However, eventually, I was lucky enough not to experience any of the major side effects. Actually, the only side effects I had were a sore throat and minor nose bleeds, but I was scheduled to see an ENT doctor weekly to help manage these side effects. Also, I saw a skin specialist who provided me with a cream to prevent any skin irritation.
During my stay in Prague, I had the support of a family member who accompanied me. Two to three weeks after finishing my treatment, I was feeling a lot better. Before treatment started, I could barely move my feet and it was necessary for me to have a wheelchair to get around. At the end of treatment, I was able to take a 3.5 km walk through Prague’s Old Town for the first time.
