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.