Your stories

James’s Story - February 2015 update...
Further update June 30th 2015..


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 showed further tumour growth, this was not as rapid as she had feared and I am safely through to 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. In Oct 2014, Dr H 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 on November 2014, I embarked on a new regime in the hope that this would give me more time.

Unfortunately, by the end of 2014, it was clear that this new treatment wasn’t going to work. I went off my food and began to feel seriously ill. To make matters worse I had a collapsed lung and had to be hospitalised. I went through a very dark period and my consultant was talking about days or weeks life expectancy. But since then, they have upped my steroids and I’ve recovered my appetite and my spirits have lifted. I’m still very weak and realise that I’m likely to be housebound but hoping I shall see some sunshine and feel the warmth of Spring!

James
Feb 2015

With great sadness James lost his battle with chordoma on Monday 29th June 2015. James did indeed feel the warmth of spring.



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I am a 37 yr male living in the UK that would like to share his story.

In 2010 after having some muscular muscle spasms in my back that persisted after all the efforts of an osteopath I was referred to an orthopaedic specialist who upon initial diagnosis told me I had a damaged coccyx and that although it was in poor shape and they could not fix it they would help me stop it getting worse, having done a lot of physical activity I thought maybe it was one of the many falls I've had.

After a session with a physio who showed me some core muscle exercises I was glad to see that the spasms almost stopped completely and I felt so much better for it

Forward 5 months and due to the incompetence of a certain secretary messages from the specialist mentioned above finally were conveyed and I was asked to return to the clinic.

Being completely honest I thought this was just a follow up only to be told that on my first consultation something had been missed and another scan was necessary, the specialist said it wasn't something they had looked for and needed to be sure. Another scan this time with a marker showed a tumour on my coccyx and the specialist told me it could be a sack of fat or a Chordoma, he warned me not to jump to any conclusions or research the matter on line until we had conformation. Of course that meant going straight on line to check and what I saw and read about chordoma shocked me, I thought it can't and won't be this and just waited for my biopsy procedure a week later

Of course you can guess what my results came back as, I think I knew given the pain of the biopsy and the sound of grinding he made that this was no sack of fat.

I can't tell you how hard this was to know, having a beautiful wife and young son at home and what I thought would be many more years to come. All I can say is thank god for the counsellor that I met and for my wife putting up with how sorry I felt for myself

What followed was truly the beginning of my ordeal.

It started with various surgeons calling me asking me to allow them to operate, by now of course I realised how rare this was and how limited the experience dealing with it was. So I did my research and went with a surgeon who had the most UK exposure. Next came the surgery which I was told best case would be 2-3 weeks in bed and worst case would an infection which would be manageable.

Well surgery was a success the tumour was an early interception and only a little larger than a golf ball, 9 days and I was back home recovering.

Or so I thought, I began to have discharge and a lot of it, 2-3 times a day ranging from a couple ounces to five or six each time mixed with blood smelling horrible. Finally going to my local A&E who told me to go back to the hospital where I had my operation immediately as I was at severe risk, I later found out my white blood cell was through the roof.

Back at the original hospital my wound had to be reopened and cleaned out and I emerged this time with an open wound and a vac pump. 18 days in hospital to recover from my infection and pumped so full of antibiotics I could have supplied a small town. Then of course came the time at home to lie there waiting for a dressing change being hardly able to walk and there was always the pain.

Interestingly I had read about how addictive and severe effects of the opiat medicationI was given. So I had made it my mission to reduce the dosage and bear the pain as not to live with the side effects later. I remember my GP asking me how I was and how the pain was and when I told him about my halving the dosage he just said my boy just take the drugs we can sort out any dependencies later. I still chose to go with less and still my moods and thoughts were incoherent and dark

So 2-3 weeks became 3 months out of action, by now I had daily trips to the surgery with more mobility to get my dressings changed. My first trip back into London was to meet my oncologist and discuss radiation, which was eventually after a few hick ups was granted as proton beam therapy in Switzerland. Just 2 months after surgery I was fortunate to go there meet the team and plan my treatment. 2 months after that I was back for 3 months of daily sessions and that was not easy but by now I had been able to get my fitness and strength back up and you would never guess anything was wrong with me

The one side effect that plagued me the most post surgery and since has been the difficulty I have passing stools. The surgery left me with very limited anus mobility shall we call it which can really hinder that process and causes a lot of pain sometimes.

So upon returning from my proton beam I had tried to get done normality back into my life, until 2 months later and without warning I started to have anal bleeding, more like a gush of it at one go which was horrific to see. Straight to A&E to be told that possibly as a side effect of radiation I may need my colon cauterising so we did that too, twice!

In for a penny I guess and there it was almost 8 months and countless visits to doctors, hospitals and clinics I was able to start again

One thing I haven't mentioned above was that I had been able through my counselling to remain level headed choosing to live a full life instead of one in fear. The way I see it do I want my son growing up seeing daddy always stressed about his back or like all other daddies being able to spend quality time together. When that day comes and I'm lying in that bed waiting to go do I want to wonder about what I could have done or smile about the things I did do. I chose the latter on both counts and today I try and live by that mantra daily though it's not easy

I hope my story helps anyone who finds them self facing this obscure and unyielding condition