Updating James's Story........
My problem started in the early - mid 2000s when I suffered from consistent pain in my coccyx. I was referred to a back consultant who diagnosed coccydynia. He gave me an injection to relieve the pain but said that if that didn't help, there wasn't much more he could do. It didn't relieve the pain but due to what he had said, I didn't go back to him.
In late 2008 with the pain getting worse, I thought I would discuss it again with my GP but in view of what the consultant had said before, he could only suggest paracetamol. Somewhat frustrated, I was talking to a work colleague and she suggested going to a private osteopath who she had seen. I did so and he thought some laser treatment might help. Crucially, however, he said that before commencing, I ought to have a scan to check what was going on. Nobody had suggested this before.
So in November 2008, I went back to the GP and he said yes, he would refer me to another back specialist with the specific purpose of having an MRI.
The MRI showed a lump at the base of the spine. At first I was pleased, as it at least showed there was a problem, but I was soon careful what I wished for when the consultant said it looked like a chordoma. That triggered lots of research online and I soon learnt quite a lot about this rare cancer! He referred me to Mr C of the RNOH Stanmore, a specialist chordoma surgeon. A biopsy confirmed a sacral chordoma and he performed an excision in Feb 2009.
The chordoma was about the size of an orange and Mr C was pretty confident he had removed it with a satisfactory margin. He did not think any radiotherapy was necessary and follow up analysis confirmed this. Inevitably, however, he had to damage some nerves and I have had to use intermittent catheters ever since (which I find easy and not too inconvenient). There is also some bowel movement impairment but crucially I have full control and do not have any incontinence problems. There was a fair amount of discomfort at first in the buttocks when sitting down and I find it better to lie on one side. This has got a bit better over the years.
After about a three month recovery, I was able to return to work.
I had regular scans which were promising at first, but in 2011 a further swelling appeared in my left buttock. The radiologist thought it was post - operative change but Mr C was suspicious and a further biopsy showed it was chordoma which had now tracked to my left buttock and down my left thigh.
Mr C excised this in June 2011 and I made a fairly quick recovery with no change to other functions. But this time there were some remnants and he said that I should have radiotherapy. A scan also showed some very small nodules in my chest which he wasn't sure about but thought could be removed if they developed. I was referred to Dr B at Addenbrooke's Cambridge who devised the radiotherapy which was quite intensive - 40 sessions over 8 weeks. This went well and Dr B was pleased with the shrinkage in size of the nodules in my pelvic area. The small chest nodules seemed to have disappeared.
The regular subsequent 6 month scans showed promising progress with small but steady decreases in the size in the buttock nodules. However, in summer 2013, I began to have asthma like chest symptoms which I reported to Dr B and he immediately organised an MRI and CT of my chest. He said he wasn't too worried and so, when I went to see him afterwards in Sept 2013, I wasn't prepared for what he had to say. He told me it looked like the chordoma had metastasized to my lungs and wasn't operable or curable. A biopsy confirmed this. I also later developed another large swelling on my left thigh.
He referred me to Dr H for treatment and she told me that the only real treatment is Imatinib, a tablet form of chemotherapy that might shrink back the tumours in the short term. I took this drug from Nov 2013 to Jan 2014 and it made me feel very unwell. Worse, it didn't do any good. A scan in January showed 30% growth in tumours and so Dr H said there was little point in continuing. She recommended some additional radiotherapy and I had 15 sessions on a targeted area of my lung and also on the swelling in my thigh. I believe this was helpful in both areas.
Other than this, Dr H said in January 2014 that there is not much more they could do and I would be fortunate to see Christmas 2014. However, although subsequent chest xrays and CT scans have shown further tumour growth, this is not as rapid as she had feared and I am confident of seeing 2015. I'm pleased to say I’m not in any real pain but am suffering from progressive shortage of breath and exhaustion after the most basic of physical activities. Dr H has now referred me to Prof J of the Royal Marsden who has experience of combining Imatinib with another drug called Sirolimus which has been successful in restricting the growth of lung tumours. So as of November 2014, I am now embarking on a new regime in the hope that this will give me more time.
I have been able to enjoy life over the last year with brilliant support from my wife Sally and my four children. We have been on several holidays including a 12 day cruise to the Baltic which we greatly enjoyed. In May, I celebrated my 60th birthday with a big party. In the same month, my children persuaded 14 of their friends to participate with them in the Dirty Rat Race at Burghley Park Stamford. This gruelling 13 mile run is reputed to be the longest assault course in the world and they successfully raised a considerable sum of money for Chordoma UK and Dr Adrienne Flanagan’s work at UCL.
I remain in good spirits and fill my day with as much activity as possible. I play the piano and have been musical director of various Am Dram productions in the past. In order to give me a focus, I have committed to help in another production in March 2015 - so that's my next target!