Linda’s Story

My name is Linda. I am 60 years old and am married with 2 grown-up children. Following a routine Hysterectomy in 2002, I was informed that the uterine fibroid removed during my operation contained a rare malignant tumour; a Uterine Leiomyosarcoma. Thankfully the tumour was completely removed during the operation. Six weeks radiotherapy followed my surgery and I then began on the road to recovery.

Unfortunately in 2007, I was informed that my cancer had returned. This time it had returned near to my kidney. I had been telling my Consultant for several months that I didn’t feel well, so by the time the tumour was found it had grown very large. I underwent further surgery in August 2007. Due to the location of the tumour, my kidney had died, therefore, necessitating removal of it during the surgery.

Again, I was given the “all clear” but unbelievably in February 2008 I was told my cancer had returned for a third time! This time the cancer had returned in 3 places around my bowel and the blood vessels that supplied it. Due to the location of my tumours, my surgeon told me that he was unable to remove them and I was offered chemotherapy. Seven months of gruelling chemotherapy followed but unfortunately my tumours only shrunk slightly. I was then given the devastating news that my cancer was now terminal.

In August 2008, I read a newspaper article about Alan Bowley and how he had received Cyberknife treatment for an inoperable tumour. Immediately I contacted Alan and Janet Bowley, who directed me to the Cyberknife support website. The doctor on the American website advised me to contact Cyberknife centres in Europe. I e-mailed several Cyberknife centres, of which, Madrid were the first to reply. Janet had forwarded onto me the contact details of another lady who had had a positive experience at the Cyberknife centre in Madrid, so I felt optimistic about the treatment Spain would hopefully be able to offer me.

The doctor in Spain requested I send my recent CT scans to him, which I duly did. I was soon on my way for a consultation with him. The doctor in Spain suggested I had the fiducial markers put in that day. Although they had difficulty getting them in the right place, it was eventually successful. I then returned home to the UK.

I returned to Spain a week later to have the planning CT scan and then to commence the Cyberknife treatment following the scan.

Following the scan I was informed by the doctor that I would need 5 consecutive days of Cyberknife treatment, instead of the 3 treatments that I had initially been told. The downside of this was that we had booked our flights home for a certain date, so we had quite a stressful time rearranging our travel plans.

I was also told that each treatment session would now be 3-5 hours as opposed to the 90 minutes I was expecting.

However, despite the change in my treatment plan, I continued with the proposed Cyberknife treatment. My actual Cyberknife sessions, for some reason, lasted between 6-8 hours. This was very difficult as I had to lie still for so long without being able to eat or drink. The one main negative part of my care that I received in Spain was the language barrier. The hospital staff that took care of me during my treatment did not speak English, so there were unable to tell me why my treatment sessions were taking so long.

In hindsight now, I can say that I did find my Cyberknife treatment both difficult and stressful. I didn’t feel 100% physically, due to my previous chemotherapy treatment before I arrived in Spain, which didn’t help with how I coped with the treatment. Although the staff at the Cyberknife clinic in Spain were very helpful and friendly I found the language barrier very difficult; things did seem to get lost in translation!

Since my return from Spain, I have felt reasonably well, with only some mild post Cyberknife side effects, such as irritable bowel-type symptoms and diarrhoea. The side effects have not been as bad as what they were following the conventional radiotherapy I had.

Although I would not describe my Cyberknife experience as a positive one compared to others I have spoken to, I certainly don’t regret having the treatment. I have not yet had a follow-up CT scan since my Cyberknife treatment; I have decided to wait until I reach the 6 month mark.

My Consultant knew nothing about Cyberknife before my treatment; I think he has read up on it since!

Liam’s Story

My name in Liam and in July 2007 I was diagnosed with inoperable pancreatic cancer. Prior to a holiday in Turkey, I had undergone investigations at my local hospital, as for several months I had been suffering with abdominal symptoms (diarrhoea, loss of appetite and weight loss). Whilst on my holiday I noticed that I had also become jaundiced.

On my return from Turkey, I attended my local hospital, where I had to undergo surgery to insert a stent into my bile duct to try and relieve the jaundice. It was during this hospital admission that I received the devastating news that I had inoperable pancreatic cancer. My doctor told me that there was little that could be done for me apart from a course of chemotherapy which might extend my life by months. In short, I was told I only had a matter of months left to live.

It was around this time that my sister Ann read an article in a local newspaper about Alan Bowley, who had recently travelled to America for Cyberknife treatment for an inoperable tumour. My sister immediately contacted the Bowley’s, who provided me with lots of information about the treatment. I remember how when reading the article Alan urged other sufferer’s not to give up hope as there was a possibility of a cure.

We immediately contacted Georgetown University Hospital in Washington DC, where Alan had had his treatment. I quickly sent my scans to them but unfortunately they informed me that they could not offer me treatment. Undeterred, I found out there was a Cyberknife centre at the Anadolu Hospital in Turkey. It seemed such a coincidence as my wife Jane and I had a holiday home in Turkey. My sister contacted Turkey and they requested a copy of my recent medical records and also a copy of my latest PET/CT scan. The last scan I had had at my local hospital was just a CT scan, so I decide to attend a local private hospital to have a PET/CT scan performed, as these type of scans are not available on the NHS.

Incredibly, the hospital in Turkey replied within 24 hours of receiving my scan pictures, with the news that they thought they would be able to help me and urging me to arrive in Turkey as soon as possible. A week later I arrived in Turkey and had a consultation with the Oncologist. Professor Onut recommended that I undergo 3 months of chemotherapy, with a view to then having Cyberknife treatment after completing it.

Having a holiday home in Turkey, I decided to undergo the chemotherapy in Turkey; besides at least the weather would be warmer than the UK! In February 2008, following completion of my chemotherapy, I underwent 2 Cyberknife sessions on 2 consecutive days. I found the procedure straightforward and completely painless.

In May 2008, I returned to Turkey for my 3 month post Cyberknife PET/CT scan. Incredibly, the scan showed that there had been no growth of the tumour and the cancerous activity of it had also reduced. I was just amazed and so relieved.

In August 2008, I again returned to Turkey for my 6 month post Cyberknife scan. Although the scan showed my pancreatic tumour had still not grown, unfortunately, the scan showed that the cancer had now spread to my liver. Although the lesions were only very small, the Professor recommended I commence on Xeloda; a chemotherapy drug. On my return to the UK, I was informed that the drug was not available on the NHS but they could offer an alternative drug, no doubt an inferior drug but I could only obtain Xeloda if I went private. I was told that spread to the liver was common with pancreatic cancer and they had no experience of anyone living beyond 24 months – I thought I will show them!

I decided to return to my holiday home to continue the chemotherapy in Turkey, where I knew I could obtain Xeloda without any trouble. Whilst in Turkey, I had another PET/CT scan which showed that both the pancreatic and liver tumours were in remission. I was advised to continue with the chemotherapy.

I underwent a PET/CT scan in December 2008. The Professor advised me that of the 4 lesions in my liver, 2 of these had disappeared completely but 2 had remained. He also advised me that there was no cancerous activity at all in my pancreas. I was advised to have further Cyberknife on my liver lesions, in the professor’s words – “to get rid of them”. I duly had this done and am due to return to Turkey at the end of February 2009 for a follow up scan.

At this moment in time, I feel great. I have no pain, am gaining weight and living life to the full. Overall, despite the reoccurrence in my liver, I feel my current prognosis is good news in my fight against this disease. I believe that my life will be significantly extended by having the Cyberknife, if not potentially cured.

The care in Turkey was fantastic. They were friendly and caring and nothing was too much trouble for them. We even got picked up and dropped of at the airport by the hospital staff each time we were in Turkey! The fact that the Professor recommended 3 monthly PET/CT scans, I’m sure was a significant factor in the detection of spread of the cancer to my liver at such an early stage.

Do not give up hope, as I believe that Cyberknife treatment has given me a great chance of putting my pancreatic cancer into remission. Keep faith that this type of treatment can give you a normal life again like it has for me.

Sadly, Liam passed away on 21st March 2009 whilst in Turkey. His sad death was not related to his cancer. His recent scan had shown that his cancer was inactive. His family are happy for Liam's story of his Cyberknife journey to be still told to others. They are so thankful that Cyberknife was able to give Liam the chance of living a full and happy life right up until his death.

John’s Story

My name is John and this is my story about my battle with pancreatic cancer.

Over the last 14 years, I have suffered acute pancreatitis, which has entailed numerous hospital stays. However, in October 2007 I began experiencing stomach problems again, so I was referred to a local hospital for further investigations. This was followed by several hospital visits and stays in Swindon, Poole and Bournemouth.

In March 2008, I became jaundiced and it was necessary for me to have a stent inserted into my bile duct to try and relieve the jaundice. It was during this procedure that the surgeon was able to take a biopsy from my pancreas and I received the devastating news that I had pancreatic cancer.

In June 2008, I had an operation to reposition my bowel and it was following this operation that I was told my cancer was inoperable. The surgeon told me that I only had 3-4 months left to live, maybe a bit longer if I had chemotherapy. Resigning myself to the fact that I was dying, I agreed to try some chemotherapy.

A few weeks after receiving my diagnosis, my wife Mavis was told that the pain in her right hip, that we had suspected was a trapped nerve, was in fact a cancerous tumour and she would need to undergo surgery to replace the hip joint. Mavis had already beaten breast cancer successfully six years previously. We were absolutely devastated when we learnt that Mavis’s cancer had returned; I just thought ‘what else can happen to us?’

In August 2008, I read about Alan Bowley’s story in the Daily Mail and how his cancer had been treated by Cyberknife Radiosurgery. I was amazed by his story and knew I had to investigate it further. I spoke to my specialist, who agreed I had nothing to lose, if it meant saving my life. I immediately contacted the UK representative for the Anadolu Hospital in Turkey. Malcolm, the representative contacted the Cyberknife centre on my behalf and my hospital sent off my records and recent CT scan pictures to them. I soon received the good news that I could be offered Cyberknife treatment.

In September 2008, I travelled to Turkey to commence my Cyberknife treatment. Once I arrived I was informed I was having fiducial placement the following day. The fiducials were inserted into my pancreas through a fine needle under a local anaesthetic. I underwent 3 treatments of Cyberknife ten days later. Each treatment lasted 2 hours, which I found easy and straightforward. I can’t believe how easy the treatment was and I suffered no side effects whatsoever! I could hardly believe the Cyberknife had done anything.

In December 2008, Mavis and I travelled back to Turkey for my 3 month post treatment scan. Although it was a very nerve-wrecking time for me, the staff at the hospital were very reassuring. The scan showed that my tumour had shrunk from 2cm to 1.5cm. We were amazed by this news and so relieved. The doctor in Turkey is pretty positive about my treatment and has told me the tumour may stay there, shrink or be reabsorbed back onto my body.

I’m so grateful that I read about Cyberknife in the Daily Mail because if I hadn’t, I would probably be dead now. Cyberknife is space-age technology; it should be available on the NHS.

I am due to return to Turkey in March for my 6 month post treatment scan. As for my wife Mavis, she is coming to the end of her chemotherapy and will soon begin radiotherapy but she is making good progress. Hopefully we are both on the mend!