All posts by Susanna Conchin

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.

Bill’s Prostate Cancer Story

I had no symptoms for prostate cancer but I was sent for a routine blood test which showed an elevated PSA reading and a biopsy followed.

The diagnosis was a total shock to say the least! I felt anxious and stressed and my wife also became very anxious and stressed.

I felt that the options of treatments available to me weren’t explained well. I was offered a removal of the prostate-‘throw it in a bucket’ their words, and radiotherapy which would have lasted one to two months.

The medical team recommended the removal for me but I started to look at alternative treatments. I found the idea for the removal of the prostate barbaric and the possibility of it not being 100 % successful was worrying. The cutting of the nerve endings which could/would led to incontinence etc, plus the possibility of pre-clinical cancerous cells remaining in the fatty tissue did not give me any confidence.

For me, there were no positives to having treatment on the NHS; they were all negatives. I felt like they were missing a lot of information, I was only offered removal or radiotherapy, nothing else or other options. I was told I had no other alternatives and not to look at the Internet as I had only the choices from them.

I came across proton therapy on the almighty Internet and it appealed to me due to the near 100% feedback of immediate success and the lack of after-treatment complications.

Since having the treatment I can’t think of any negatives from going through with it, the outcomes are all positives as I’ve got my life back and we can look forward to the future with confidence

My treatment lasted 21 fractions and from the moment my wife and I arrived at the centre we were made to feel very welcome by the staff. We received warmth and understanding, this coupled with the professionalism and expertise of all the medical staff made us realise that we were in the right place and that the decision to come to Prague was the right one.

I found the side-effects of proton therapy were short term constipation, which started the last week of treatment and lasted for four weeks after returning home. Now my intestine seems to be more sensitive to what I eat as I have bouts of diarrhoea.

I’d describe my health now as excellent, other than the above, which is not a big thing. Sexually I find the erection is not as firm and the ejaculation is none existent. The sensation is there but not the fluid. However, I would recommend PTC which I have done so many times to many men, it is the only way forward in today’s world. The other methods are prehistoric.

Thomas’ Prostate Cancer Story

The symptoms of prostate cancer for me were non-existent, the only indication I had was an elevated PSA level. Once I received the diagnosis of prostate cancer I was concerned and wanted to know how serious it was, I wanted to learn more about it and all the possible treatments. The impact the diagnosis had on my family was that my wife was very concerned and somewhat anxious for me.

I personally feel the various options of treatment weren’t explained clearly to me by my GP, I was then referred to a urologist where various tests were carried out.

I was offered the radical prostatectomy as this surgery was apparently the best option for me. Following the conversation with my specialist I began seeking alternative treatments, the reason for this was mainly due to the concern of side-effects of the treatment offered to me.

I began researching online for all treatments related to prostate cancer and came across proton therapy. The specialists didn’t bring this therapy to my attention as they were experts in surgery and conventional photon radiotherapy, but had no experience of proton therapy.

It appealed to me for the reduced likelihood of serious side effects, which is due to an increased accuracy of the treatment technique. The negatives of this treatment were the distance of the centre from home and the cost, but I liked the idea of being treated at a specialist centre for cancer.

My treatment lasted 21fractions and the staff were excellent, there was always help at hand when I had any difficulties.

Since the treatment I now feel very well and feel like everything is back to normal. I’d recommend Proton Therapy and I think it’s a good option for those who can afford the cost, and for those who can be away from home for the treatment period.

Barbara’s Prostate Cancer Journey

I felt my world turn upside down when the doctor told my husband he had prostate cancer. We didn’t have any further details and we were told the good news that this cancer put us straight onto the ‘Gateway’, so we had nothing to worry about getting it sorted. But we did!

The waiting!

We have medical insurance so thought there wouldn’t be any waiting; however, even after our insurers quickly allocated a consultant, we then started on our journey of waiting.

We were waiting to hear when and where the MRI would take place, waiting to discuss results with the consultant, waiting to hear when and where the CT scan that was needed would take place, waiting to speak with the consultant for the next step.

The next step was going for a biopsy, again, after we waited for the ‘when and where’ it would take place and we had the follow-up consultation meeting to discuss treatment.

Throughout this time my husband researched, he researched every night on his iPad to verify what should be the best course of action for him.

This became even more difficult after consultations with a surgeon and separately with a radiologist. It was impossible to get an objective answer from anyone in the medical arena who seemed to have their own preferences that didn’t sound preferable to us.

It wasn’t until we reached Prague after my husband had stumbled across information on Loma Linda in America and the Proton Therapy Center in Prague, when the consultant gave us an objective list of possible treatments and side effects, this clarity and openness was a breath of fresh air.

And we didn’t have to wait any longer! We returned home and sorted out cover at work and then were on our way for the treatment. My husband luckily only needed five fractions on alternate weekdays.

We rented a lovely one bedroom apartment in the middle of old town Prague where we relaxed, went sightseeing and enjoyed our time together, knowing that we were in the best hands for being treated, to allow us to get on with our lives with the absolute minimum of fuss and side-effects.

Thank you PTC from the bottom of our hearts.

Dawn’s Prostate Cancer Journey

As a phlebotomist I knew the dangers of prostate cancer, I suggested to my husband that he should have a PSA test as he was having a ‘well-man’ check. There were no symptoms of prostate cancer and men tend not to know much about prostate cancer and are not offered routine testing.

When we got the diagnosis it was terrible, the news was just devastating and the outlooks from the treatments offered by the NHS were just bleak. I remember my husband saying he would rather die than end up with double incontinence and erectile dysfunction.

I didn’t seek any counselling support for myself but once my partner started his proton therapy treatment I felt relief for the first time in a while. He was relieved also to find an answer he had been looking for as well as giving us our life back.

From the start of the proton journey I felt my partner was in the best care by the best professionals possible, I can’t thank them enough. They provided us with everything we needed and instantly we knew we had made the right decision with Proton therapy.

I would definitely recommend them, the whole experience was all positive with everything to gain; they gave me back my husband.

Disclaimer: This patient is happy to share their story but would like to protect their identity.

William’s Prostate Cancer Story

‘Just in case’, that’s the only reason I found out about my prostate cancer, I had no symptoms for it whatsoever just some muscular problems, but my doctor tested me as a precaution, it was lucky he did.

My initial reaction was utterly shocked and angry that I had not been briefed about prostate cancer and the treatments previously. After the diagnosis me and my wife felt anxious and stressed, I hid the information from my children for two years but eventually they found out and became concerned, despite feeling scared myself I played the whole thing down to avoid them getting worried.

I personally felt information was not delivered to me properly by my GP, I was then referred to the urologist to carry out tests such as: blood tests, MRI Scan, CAT scan, and a biopsy. Once the tests had been completed the treatments on offer to me were: surgery, active surveillance, radiotherapy. They personally came to the conclusion that the most appropriate treatment for me would be surgery with a 3-4week waiting time; they explained the surgery would be done in a day but didn’t give me an exact recovery time.

I began seeking alternative treatments after two long years of active surveillance and exploring many different treatments within the U.K, including clinical trials. The main motivation for looking elsewhere was the 50/50 chance the NHS was offering me of developing long-term side-effects such as incontinence and impotence. From my angle although it would be nice for it to be free in the U.K and to receive aftercare here, I believe quality of life is much more important.

The NHS is overloaded and slightly unreliable, I had conflicting reports following MRI scans regarding the size of my tumour. The whole message they conveyed for treatment was very negative, basically saying every treatment gives you life changing side-effects, not much of a push to get treated.

The treatments that don’t offer side-effects are not even discussed or suggested by the NHS, each consultant I saw discussed two different types of treatments which were essentially the treatments they specialised in, any other type of treatments I had to research myself.

During research I came across the Proton Therapy website, it immediately looked like a positive ‘can do’ professional approach with a reduction in side effects. I began the treatment and received 5 fractions and I have to say, I recommend Proton Therapy for all men as it offers the best opportunity to treat prostate cancer so you can carry on with your lives. Since the treatment my health is good and I’m awaiting my first post treatment test. Although it’s early days I feel positive.

Disclaimer: This patient is happy to share their story but would like to protect their identity.

Humphrey’s Prostate Cancer Story

Getting up to urinate 2-3 times a night became a real annoyance, so I went to the GP who referred me to the urologist for tests- but nothing could have prepared me for the diagnosis of prostate cancer. I felt numb, couldn’t concentrate and felt anxious all the time, my family didn’t take the news well either they became concerned and stressed also.

The options for treatment were only partially explained to me through the NHS, the options recommended for me were:

  • Surgery
  • Radiotherapy
  • Brachytherapy

Radiotherapy was apparently my best option and would have lasted 7.5weeks after 3months of hormone treatments. I started to research alternative forms of treatments due to the high risk of side-effects associated with these treatments and yet I feel the side-effect subject wasn’t explained well during the NHS process.

I heard about proton therapy from a letter in the national press from a patient, I noticed immediately the reduced risk of side-effects and the shorter treatment time. I decided to go ahead with proton therapy and received 21 fractions of treatment but was also put on hormones, the hormones gave me hot flushes but apart from that, no other side-effects especially from the proton therapy itself.

Treatment exceeded expectations for me, the centre was so clean with reliable equipment and the staff were marvellous. I didn’t feel too ill from the treatment and managed to go out and explore the city of Prague.

I am still on hormone treatment but my future now looks positive, once the hormone therapy ends I’ll be back to being healthy like I was before Prostate cancer.

Disclaimer: This patient is happy to share their story but would like to protect their identity.

Michael’s Prostate Cancer Story

Devastated, that’s how I felt when I was told I had Prostate cancer. I originally went to GP as I woke frequently in the night needing to urinate; I never expected it to be serious though.

I was referred to the urologist who monitored my PSA reading, it wasn’t until my PSA score steadily increased to 14.6 that I got offered treatment. This was following my insistence that something needed to be done, but the NHS said no treatment was recommended for me; in the end they finally gave me the option of having a prostatectomy (removal of the prostate) and radiotherapy.

With these two treatments they both carried a high possibility of side effects including incontinence and erectile dysfunction. As a result of these side-effects I began looking around for other treatments and that’s when I came across Proton therapy.

Even though I was to have 21 fractions the whole process was speedy and efficient and it exceeded my expectations. I found the staff incredibly caring and friendly and the best part of it all was no side-effects. However I did get some side-effects from the hormone treatment which gave me breast enlargement and tenderness.

I would 100% recommend proton therapy; it’s up to date with much less risk of damage to other organs and it has left me feeling optimistic about my future.

Disclaimer: This patient is happy to share their story but would like to protect their identity.

Richard’s Prostate Cancer Story

Being told you have prostate cancer when you’ve had no symptoms what-so-ever is terrifying; I was very shocked as I didn’t realise there was anything wrong with me. It didn’t just affect me, my family had to go through it all with as well and I knew they were very worried.

The available treatments in the UK weren’t explained all that well, in the end it was recommended that I underwent the Robotic radical prostatectomy with a 3-4 week wait before I got the operation. Following a consultation with my specialist I decided to research alternative forms of treatment as I didn’t like the side-effects of conventional treatments.

I did mention proton therapy to my specialist but they said it wouldn’t work for prostate cancer, however this didn’t stop me researching it online. I soon realised it had very little side-effects and all the feedback was positive, whereas with the NHS I felt like all the treatments were a negative. Since treatment I have realised how many positives Proton therapy has and I now still have my sex life intact and my bowels and bladder are in good working order also.

My treatment lasted 5 fractions and the team at the Proton therapy centre were just brilliant, there were some short-term side effects such as: Feeling sick at the first stages of treatment which was about as bad as it got and about 2 weeks after my treatment I experienced what felt like constipation- but I did manage to open my bowels eventually, I just had to be patient. However now I’m a little the other way and have to go straight to the toilet when the need arises, Ejaculation is very quick in the morning but that’s not really a problem.

I would recommend Proton therapy to anyone that found themselves with the same diagnosis; I have all the same bodily functions as I did before the treatment, which would not be the case with what was offered by the NHS.

Disclaimer: This patient is happy to share their story but would like to protect their identity.