Filip´s Chordoma Cancer Story

On January 5th, 2018 I was diagnosed with chordoma of the second cervical vertebrae. A partial laminectomy was performed at the Department of Neurology in the Military Hospital in Belgrade. Following the initial resection, I was advised to find a hospital which could treat my tumour using proton beam therapy. Upon completion of proton therapy, a surgery to stabilize the vertebrae would be performed.

Before my diagnosis was confirmed, I was admitted to the hospital where doctors suspected I suffered a stroke. I remember not being able to control my extremities and I had spasms in my fists and legs. However, my brain was not affected, and I was fully alert. When the doctors were examining the MRI scan to check if I had a stroke, they noticed the growth on my C2 vertebra.

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.
Before my surgery, I felt optimistic, but that soon faded to fear and despair again as the tumour could not be fully removed. Following the surgery, as advised by my doctors, I started to research proton therapy. I knew my only hope would be to find a centre and start treatment as soon as possible. I found the Proton Therapy Center in Prague via a website called Proton Therapy Today and in March 2018, I contacted a treatment coordinator who requested all my medical documentation and MRI images to determine if they could potentially treat me. It only took the PTC a couple of days to inform me that I was a suitable candidate for treatment at their facility and they provided me with information regarding the suggested number of fractions and the total cost of the treatment. My next step was to apply for funding through the Ministry of Health of the Republic of Serbia, which can be a tricky and lengthy process if you have no idea how to begin or whom to ask for help.

Once I had all of the information about the proposed treatment at the PTC and knew the requirements for the funding application, I went to my doctors who were on board and ready to sign all the necessary papers to be sent to the Ministry of Health. Unfortunately, due to the lengthy process of applying for funding, I was unable to start my treatment until January 23rd, 2019.

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.

Initially, the diagnosis turned my life upside down. I am a young guy and after the partial laminectomy, I was forced to wear a neck collar and the doctor’s prognosis was bleak. The more I researched chordoma, the more I became afraid of what the future would hold for my life. Cancer is a scary word that you hear on TV and maybe from acquaintances, but I never expected to hear a doctor tell me that I have cancer, especially such a rare specific type of cancer that only affects one in a million patients.

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.

Treatment at the PTC was a pleasant experience. All the employees were extremely helpful and friendly. I was surprised when the cleaning lady would smile and say “dobrý den” to me as we passed each other in the hall. Such positive attitude and general respect may not be something you will see in a Serbian institution. The international treatment coordinators were always checking in on me to make sure I did not need anything. The facility is well organized and I did not experience any delays or complications. I would highly recommend the Proton Therapy Center to future patients.

Graham´s Prostate Cancer Story

On having an annual thyroid function blood test in February 2018 the phlebotomist suggested a PSA test to which I agreed. At the age of 77 it was surprising that I had never heard of PSA tests particularly as I had occasionally mentioned to doctors in the previous 15 years that there had been a gradual increase in the frequency with which I urinated.

A doctor told me that the test result was 7.3 and that we would have to monitor my PSA level. In a subsequent telephone conversation I agreed to have a prostate MRI scan but the hospital sent me an appointment notice for a biopsy and told me scans were only given to men with PSA levels of over 10. I wasn’t happy with this and paid for a multi-parametric MRI scan at a private clinic.

The mpMRI scan report said I had extensive bilateral prostate cancer. Having led a happy and healthy life my first reaction was to do nothing, particularly as my doctor said I could die with prostate cancer and not because of it. However, my wife and family were opposed to this so I started my research in June. Almost immediately I came across worldwide glowing reports for a clinic in central China which uses a mixture of western medicine and traditional Chinese medicine including herbal therapy and acupuncture to treat prostate cancer. Following correspondence by email with the clinic and three of its former patients I decided to go there. However, visa processing delay and the Chinese consultant’s and my own holiday arrangements resulted in my plans being postponed. Meanwhile I came across a book by an American, Bob Marckini, who after very extensive research opted for proton therapy treatment in California. He convinced me that proton therapy was my best option.

I contacted PTUK in early July and was impressed at the amount of detail supplied in the prompt reply. Prior to my treatment planning visit to Prague in December I was required to have a biopsy and then hormone treatment to reduce my PSA, which had risen to 10.1,to under 1.0.

Throughout January 2019 I had 21 radiation sessions of short duration which left me plenty of time for sightseeing, and video astronomy and guitar courses at my comfortable apartment, recommended by PTUK, a short walk from the treatment center. The friendly, helpful and professional manner in which Dr Kubeš, his colleagues and staff advised me about my treatment and carried it out was much appreciated – as was the loan of a guitar by Katerina! Susanna, my treatment coordinator arranged for any medical or administrative problems or queries I had to be dealt with quickly. I was touched by her kindness and good humour. Three days after I returned home I began to experience the side effects which I had been told I might get. They lasted 17 days – within the 14 to 21 days forecast but helpful advice was supplied in a telephone consultation by Dr Sláviková. Subsequently I have felt fine and have been able to get on with my life without the problems I might have experienced if I had done nothing or opted for another form of treatment. I have no hesitation in highly recommending treatment at the Proton Therapy Center in Prague.

Samantha’s Nasopharyngeal Cancer Story

My fight for the only right treatment – proton therapy in Prague!

Samantha Williams, a 22-year-old student from Hitchin in Hertfordshire, was looking forward to completing her studies of animal science at Plymouth University. She loves her studies and wants to work in conservation. But cruel stroke of fate changed her plans completely. Strangely, her destiny wanted her to postpone her final exams and spend several months in hospitals instead.

Continue reading Samantha’s Nasopharyngeal Cancer Story

Barry’s Prostate Cancer Story

I was devastated when I received my prostate cancer diagnosis and felt that my GP didn’t explain all the treatment options available to me. When I learned that the waiting time for treatment on the NHS was going to be at least three months, and that the conventional radiotherapy offered to me in the UK would take 36 weeks for treatment, I decided to research further options. I found the Proton Therapy Center in Prague after my own internet research and was impressed because it was much less likely that I would suffer from side effects.

I was treated in March 2016, with treatment taking just over four weeks. The treatment took place every day for about fifteen minutes and I was free to enjoy Prague for the rest of the day as I was not suffering from any significant side effects. I was happy with my experience at the clinic, it was painless and with very understanding nurses, I felt at ease.

I am able to enjoy life now, knowing that I am fully treated and don’t suffer from any side effects from proton therapy. My son lives in Thailand with his Thai wife, and my wife and I divide our time between West Sussex in the summer and Thailand in the winter. There is nothing that I can’t do now that I could before the treatment. I recommend proton therapy because it can cure the problem quickly and painlessly with minimal problems afterwards.

John’s Prostate Cancer Story

When I was diagnosed with prostate cancer my medical team initially suggested Active Surveillance, a common option recommended to men in the UK with prostate cancer. This would have meant monitoring the cancer and waiting to see how it progresses before I would be treated. I was unhappy with this option so my medical team discussed other available treatments, such as conventional radiotherapy, brachytherapy and chemotherapy. I researched some of these options on the NHS website, and it was only when I discussed what I found out with my consultant that my doctor began to share more thorough and detailed information. I didn’t like the prospect of long treatment times for these options, and was worried about the possible side effects.

I decided to research alternative treatment options and found the Prague Proton Therapy Center on the internet. I decided to contact the centre and was very happy with the service provided by the Patient Management team. Every detail leading up to my trip to the centre was very easy as the team were very helpful and reassuring throughout.

I was treated in 2015 over the period of about a month. I was initially nervous about whether I made the right decision, however I was reassured when I arrived at the centre in Prague. There is always a concern for any patient having a new or unusual treatment. I expected it to be very sore after each treatment or even have nausea. This was not the case and I felt very good overall.

My health is very good now, I am feeling positive about the future and there is nothing I can’t do now that I could before treatment. I have a sister who lives in Canada, and family in Ireland, who I am happy that I can continue to visit regularly. I am happy with my decision to travel to Prague for treatment not available in the UK, I would recommend the Proton Therapy Center because I believe it is the best treatment available. It is efficient and it offers a better quality of life. I have told men I know, why wait with Active Surveillance, contact the centre and have it done.

Neil’s Prostate Cancer Story

Initially my Urologist recommended a radical prostatectomy but I was concerned about the efficacy and adverse consequences of surgery. I requested a consultation with a Radiation Oncologist who suggested three months of hormone therapy followed by a course of standard radiotherapy over two months and a course of brachytherapy, followed by a further 18 months of hormones.

Continue reading Neil’s Prostate Cancer Story

Richard’s Prostate Cancer Story

I’m feeling very well and am optimistic about the future, my PSA level is now 0.86. I am now able to get back to riding my bike and enjoying the seaside where I live in Leigh-on-Sea. My son lives in Toronto and now that I have been successfully treated I can continue to visit him two or three times a year. I would unreservedly recommend treatment of prostate cancer at the PTC.

Through my work as a shipbroker I came into contact with American corporations who included PSA testing in their employees annual health screening. Without annual screening the PSA test is not really any use without previous results to compare it to, unless it is so high as to leave no doubt there is something wrong. This is why I believe regular screening tests should be available in the UK.

My doctor didn’t appreciate the benefit of annual tests to monitor PSA levels. My GP was no help at all, he was critical of the fact that for past 5 years I had requested annual PSA tests and tried to dissuade me from having it. So I bought a test online and did it myself after I was struggling to go to the bathroom. When my results showed an increase in PSA and my GP didn’t show any interest I chose to visit a private consultant. An examination discovered a problem with my prostate but I was advised that this was normal for a man of my age and was not offered further assistance. Through my own research about the diagnosis of prostate cancer I decided I wasn’t happy to wait for the issue to get worse and had another PSA test done privately six months later. After sharing these results with my GP I once again received a dismissive response, his reply was “you are being grossly unfair because if you have prostate cancer and I tell you to do nothing then you will sue me”. As a result of this approach, I decided to contact the Proton Therapy Center in Prague who referred me to a PTC consultant in the UK. The consultant conducted an MRI scan and biopsy which confirmed a tumour. When I informed my GP I would be going to Prague for proton therapy he told me he was not prepared to be the doctor to do any follow up testing when I returned.

I felt unhappy with my experience on the NHS and with the treatment options in the UK so I chose to speak out when I read an article about it in a national newspaper. I wrote the paper a letter in response to the article, and they published it. I believe that the standard option recommended for men in the UK with low risk prostate cancer – active surveillance – is not the best choice.

In 2015 I was treated at the Prague Proton Therapy Center every second day over the period of about 3 weeks. I was in the treatment room for only about 20 minutes each time and on the days I wasn’t treated I went shopping and sightseeing. I stayed at a hotel near the centre and walked to and from there for each treatment.

I heard about the centre through the story of Ashya King being in the media, the little boy from the UK who was treated there. I was a bit apprehensive about the treatment itself, but I needn’t have been. I didn’t really feel anything at all, I’ve had worse pain at the dentist. I was expecting to feel ill during treatment but apart from some minor side effects towards the end of treatment I had no pain or problems. The environment of the treatment centre is caring and professional and nothing was too much trouble.

I think more men need to be aware of the risks of prostate cancer and not feel embarrassed about getting tested. One of the things I’ve realised is how ignorant most men are about it. Since my treatment I’ve had five or six men get in touch with me about my experience. I ask them what their PSA reading is, and they don’t have a clue. There is a certain level of embarrassment related to prostate cancer. Women aren’t the same about breast cancer. So my view is the more it’s talked about the better it is. Education is key, as is the PSA test.

Eamon’s Prostate Cancer Story

I initially had no symptoms of prostate cancer, I was diagnosed through a routine PSA test with my GP and was shocked to discover I had cancer. My diagnosis had a significant impact on my wife and three daughters, it caused them lots of distress and worry, resulting in many sleepless nights. My GP referred me to a Urologist who recommended I follow Active Surveillance, which I believe is a common option suggested to men in Ireland with prostate cancer. I initially agreed to this plan, however I quickly reconsidered and decided I was not happy to do nothing and wait.

I heard about proton therapy through an Irish friend who had already been successfully treated with this technique, however my Urologist was not familiar with it. I researched the Proton Therapy Center in Prague and found that it appealed due to the use of the latest modern technology – pencil beam scanning, and because it is very accurately targeted, which means it does not damage healthy tissue surrounding the tumour.

My wife came to Prague to support me through the treatment. My treatment only lasted two weeks so we didn’t have to take much time off work. I was lucky that my treatment was partially reimbursed by my private Irish insurance company. I was initially nervous about whether I had made the right decision, especially considering the negativity expressed by my Urologist, however once I entered the Proton Center in Prague, I was very impressed. The staff were excellent and approachable. The facility, including equipment are state of the art. The consultants are very professional and I received continuous feedback.

I have nothing but positives to say about having my treatment at the Prague Proton Therapy Center. It is very professionally run, has state of the art equipment, excellent staff at all levels, from reception to the consultants and I strongly felt I was in safe hands.

I’m in good health now, since my treatments I have had two blood tests and it shows my PSA levels reducing, so I believe all is good! I feel very positive about the future, and I firmly believe that I made the correct decision in having the Proton Therapy treatment. My wife also says she would recommend proton therapy and we both believe that people need to be aware of this excellent treatment.