My daughter, Clare, was working away from home but when we saw her in the summer of 2002 she appeared to have a problem with her L eye lid, in that as the day progressed the lid dropped until it was virtually closed.  The eye was also very light sensitive and she spoke of headaches.  Her GP said it was her eyes and glasses were eventually prescribed.

Later in the summer she returned home for a holiday and I arranged for her to visit our family GP.  An urgent appointment was obtained at the local NHS Trust hospital.  They saw nothing to panic about and put her on the NHS MRI list which was a 6 month wait.  I said ‘no way’ and we paid privately for an MRI scan on the same day.  The results took over 2 weeks to come and a tumour was diagnosed deep in the back of her brain.  Our GP acted quickly but we had problems finding a neurosurgeon who was not on holiday as we were well into August by this time.  Eventually a neurosurgeon at a specialist neurological centre agreed to see her.  The tumour was diagnosed as a probable CHONDROSARCOMA and an operation was arranged for three weeks later.  The surgeon explained he would cut about one inch into her hairline from one ear to the other.  He would then have to work with a maxofacial surgeon who would take out a section of her skull for access.  They would jack up her brain and try to remove as much of the tumour as possible.  Our beautiful daughter was in her early twenties and a picture of health.  We were all shattered and scared.  We asked about radiotherapy but were told there was nothing available and that repeated surgery was the only solution.  He warned us of all the dangers of the op and also that he would not be able to remove all the tumour and that it would grow again.

We were all terrified but the 8 hour wait on the operation day passed and although heavily bandaged we managed to talk to our daughter that night.  We were told everything had gone well.  Six days later she was home and by late November she was desperate to return to work - her funny hair style concealed by a cap.  She had received no counselling.  No complementary therapies were offered, there was no phone number for help and we were completely on our own.  Life was good.  Her new boyfriend had stuck with her through everything.  Her new job was great.  They completed the London Marathon and raised £36,000 for a brain research charity.  They got engaged and in December 2003 married. 

The neurosurgeon wanted to operate again when he saw her in early 2004 and the operation took place in the spring.  About 12 hours later our daughter was returned to intensive care and we were told that they had needed to divide her L eye lid controllers and that her lid would now be permanently shut.  The surgeon said that he was a little bothered by the unresponsiveness on her R side but put it down to bruising of the brain from the clamp.  He said he was sure there had been no stroke because he would have seen it during the operation.  Our daughter remained very sleepy for the next few days and we were told she had been booked for a CT scan as a stroke was suspected.  The truth was revealed and a large area of damage to her brain was seen.

The next 2 weeks in intensive care were a nightmare.  She had a bolt in her skull to monitor the fluid pressure levels and she was on life support for 5 days and everyone expected the worst.  Her young fit body got her through and she eventually went onto a high dependency unit.  By this time she had a tracheostomy fitted and was being peg fed.  When her tracheostomy blocked she was returned to intensive care for another week but eventually at 8 weeks post op we discharged her and sent her to private rehab.  She had absolutely no use of her R arm or R leg, lost 40% vision in her R eye, only had a few words of speech and we later discovered was dyslexic, dysphasic and had numerous other communication problems.

And she still had chondrosarcoma that was growing and further surgery was not an option.

The hospital neurological centre was useless.  After her discharge she wasn’t even given a follow up appointment.  They had denied yet again that there was any appropriate radiotherapy available and as my daughter says, they left her to die.

Through a business contact of my husband Clare’s medical notes ended up in the USA and eventually at The Proton Beam Centre at Massachusetts General Hospital in Boston.  The more we discovered the more we thought this was her only chance and she spent 2 months in Boston in early 2004 receiving 35 treatments of outpatient proton therapy.

Protons are harnessed from cyclotron, which is equipment that our health service chose not to afford.  The Boston treatment used to be given in Harvard University but is now included in the hospital site.  There is another centre in California.  We were in the lucky position of being able to afford to pay privately but in previous years Boston has treated NHS patients, referred by enlightened oncologists.  Each day Clare was strapped into her mask and onto a table for about half an hour of treatment.  The only problems were slight headaches if the mask was too tight and absolute boredom with Boston, where we were confined in the snow and severe cold, with a wheelchair.  We met patients there from all over the world.  Those from Australia had their costs covered by their government.  USA medical insurance covers the cost of proton therapy.  We met people of all ages from little children upwards, mostly with brain, spine or eye tumours.  We got ourselves through it and returned home with a referral to another hospital in England for check ups.  They have worked with Mass Gen with other referrals previously.

Our daughter has just had her 18 month post treatment MRI in Boston and there has been no tumour growth.  We have no idea what the future will bring and we know we are not out of the woods yet.  Every 6 month MRI is very stressful.  Without the proton beam therapy we would not have been in this position and we know we have already bought her extra months of life that she would not have had.  Our daughter recovers slowly from her stroke but manages to lead an independent life with her husband and is desperately wanting to start a family, just like any other newly married couple.

At the British Institute of Radiology ‘Advances in Radiotherapy’ meeting held in May 2006 in London, Boston reported that they have achieved in 300 patients with chondrosarcoma a 98% local control rate over 10 years.

The chordoma experience gives a 10 year control rate of 40% in females, 60% in males and 75% in children.

There is a proton facility at Orsay near Paris which some NHS patients can be referred to if their long funding battles are successful.

Proton therapy is mainly used for chordomas, chondrosarcomas, para-spinal tumours, air sinus and orbital cancers, pelvic sarcomas, intra-cranial vascular malformations and benign tumours, such as acoustic neuromas and meningiomas.

The only facility in the UK is at Clatterbridge near Liverpool, which has a low energy facility for the treatment of eye melanomas.

Our experience is that the UK NHS are in denial about this form of treatment especially in the London area and SE.

13 February 2009 - update by Clare

The first operation to reduce my brain tumour was successful and I suffered no side effects. However the tumour had soon regrown and a second operation was performed in April 2004. During or shortly after this operation I suffered a major stroke and have been left severely disabled. I walk with a stick, my right arm is nonfunctional, I have a loss of vision in my right eye, I have dysphasia and am badly dyslexic. No further surgery was going to be possible.
 
My parents discovered proton therapy through a business colleague of my father. I understand that even today referrals are not made for proton therapy from the London area even though hospitals in Oxford, Birmingham and other big cities use it when appropriate. I understand that the NHS covers the cost of the treatment for these patients.
 
In late January 2004 I was on my way to Boston USA for an anticipated 35 daily sessions of proton therapy at Massachusettes General Hospital which would keep me there for two months. We arrived after a mega dump of snow and a state emergency had been declared. Wheel chair driving was different! We settled into our hotel on the river, which was to be our home for the course of the treatment.
 
I had my initial visits to the hospital, where I met the team and Dr Norbert Liebsch who was to be in charge. He had been working with proton therapy for many years, originally at Harvard University, where it was developed. I had a long 90 minutes MRI scan, which I hated, a CT scan and in preparation for the treatment my face mask was made. It was explained that I would be strapped to the treatment table and to keep my head absolutely still the face mask would be used and also fixed to the table. I was petrified at the thought of this. I panic in confined areas and this was my worst nightmare. I was told sedation was not possible.
 
The first treatment day arrived and we walked to the hospital through the snow to try and relax ourselves. Everyone appeared to be very friendly and I was taken into one of the three gantries for my first session. No sooner had they prepared me than I started to panic and everything was taken off while I calmed down. When I felt better they started again and I managed to survive the 30 minute session. The face mask had little eye slits and I could listen to music while I watched various robotic arms appear out of the walls to treat me, while the bed was tilted at various angles.
 
The department was to become my daily home and we got to know people who had come from the furthest corners of the States and from all over the world for their proton therapy. Some had chondrosarcomas, like me, others chordomas, eye and spinal tumours, adults and children. Appointments often ran late and we would sit chatting, encouraging each other to get through another day. Birthdays were always celebrated, usually with huge cakes and going home at the end of treatment was always a big celebration with more cakes. Everyone was presented with a certificate on leaving. We became friends with the physicists who treated us and there would always be a joke to share.
 
There was always a specialist nurse on hand if needed and I saw Dr Liebsch weekly to check on progress. I had no side effects other than a small loss of hair about one inch square just above my hair line.
 
After treatment I was free. I usually felt absolutely fine and we would walk into Boston centre to try and occupy the afternoon. This was really the worst part of the whole two months. Winter in Boston is really very cold and we could have temperatures of minus 12 during the day and  much colder at night. We did all the tourist sights, the shopping malls, the aquarium, the museums, the special places to eat but with the wheelchair it was very hard work. No doubt some of the special whale watching boat trips would be interesting in the summer months. We did St Patrick`s Day and learned to converse about  hockey and baseball games.
 
We were so keen to get back to England that we left immediately the 35 sessions had been completed and managed to find seats on the next flight to Heathrow.
 
On arrival home I had base line checks on my eyes and my endocrine functions and I was referred by Boston to The Churchill Hospital, Oxford. for 6 month MRI scans. These are now annual. I am now 3 years post therapy with no tumour growth. I am awaiting my next MRI appointment and will then have to wait for my oncology check in March to hear the result. It is always a really worrying time and I do not think that I will ever manage to go through it without imagining the worst and preparing myself for bad news. Those simple words "no tumour growth" are still so sweet.  I have tremendous gratitude to Norbert Liebsch and his team who have given me an extra three years of life. I had a son in November 2007 who has given us so much joy.
 
It seems so unjust that due to financial restraints and "politics" amongst doctors in the NHS that many patients who could benefit from proton therapy are denied and left without treatment.

17 April 2009 - update

You may like to alter the 3 years without tumour growth to 4 years! Those annual MRI visits and then trips to the oncologist do not get any easier, but those few words are so sweet.