Your stories

My name is Kay. I’m 64 and retired. My story began in January 2011 while shopping in Tesco’s, when I started to experience double vision. I didn’t know what was happening to me so we made a quick exit home. Luckily my husband was driving as my sight was getting worse and I could see an extra lane of traffic in a single lane area! Very disturbing!!!!! I decided to walk to work the next day and not drive. I booked an optician and doctor’s appointment. The next morning I tried to walk to work but didn’t get far due to the double vision. I was in tears and returned indoors as I couldn’t focus! I had also suffered with sinus headaches for a few years, but thought this was normal as my mum and brother suffered with migraines!

After my optician appointment I was told I needed prisms to correct my vision and a blood test to determine if there was an underlying medical condition as it had come on so suddenly! My doctor took a blood test which was normal, then referred me to the eye hospital. Throughout 2011 I had various eye tests and blood tests but the eye hospital couldn’t explain why I had double vision. As time went on I was having stronger prisms on my glasses to correct my vision. Almost a year later, in December 2011, I had my first MRI which I was told was normal too! Another year passed none the wiser as to why I had developed double vision. I was desperate to try anything and turned to acupuncture in 2013. To my astonishment my vision over the next 6 months was improving and I started to have weaker prisms put on my glasses. I was still under the eye hospital at that stage and they were talking about discharging me because of the improvement in my double vision, but I asked to be kept on because my eye still felt unstable and occasionally flickered.

In 2014 we went away for a 3 week holiday unaware that I urgently needed another MRI! When we returned there were several messages left on my answerphone asking me to make contact. I phoned and told them we were away and was booked in straight away! I was also asked if I was ok???? which seemed strange at the time but I now know why!

I attended the MRI and was quickly asked to come in to chat about the results. I was told there was something on the MRI and I would have to see the Neurology consultant at Hurstwood Park Centre in Hayward’s Heath. I had the biggest shock of my life! I sat in the room and the consultant said to me ‘I’m sorry there has been a mistake’ I couldn’t guess what he would say next? On his screen he showed me my 2011 MRI and next to it the latest 2014 MRI. He told me I had a tumour which had doubled in size since 2011! I sat there in disbelief!!!! Next I had a biopsy and after several weeks of waiting it was confirmed it was a Chordoma. I had never heard of this and was told I was 1 in a million and would need proton beam treatment. At the time it was unbelievable, but afterwards I realised how rare this condition is.

After an investigation into what went wrong, it turned out that there was a complete paragraph missing from the report accompanying the 2011 MRI. The tumour had been reported but not typed up! I was told they check for typography errors but not for missing paragraphs (the system was later improved). I was also told it made no difference being operated now rather than earlier as the tumour was slow growing. I have accepted this and moved on, but it was very upsetting at the time.

I was rushed through quickly and in September 2014 I had transnasal endoscopic surgery at King’s College Hospital to remove the Chordoma. Unfortunately I had spinal fluid leaks that meant I needed 4 further operations to repair the dura. After 2 months in hospital, 5 operations and 2 weeks of antibiotics I finally went home. I was feeling quite weak but knew I must get my strength back for the next leg of my journey, overseas for proton beam treatment. A few months later, in March 2015, I was sent to Switzerland for 2 months of proton beam treatment, which is another story in itself!



After the tumour was removed I had permanent double vision and the only way to get clear vision was to wear an eye patch over the damaged eye and use just my good eye. Luckily in August 2018 I was offered transposition eye muscle surgery at King’s to realign the eye, which transformed my life! I now have single focus looking straight ahead, which is the icing on the cake! I still have a bit of double vision looking right, but it’s nothing compared to before, when I couldn’t walk without patching my eye and would frequently veer off the pavement! As for the headaches, I used to have boxes of sinutab in my cupboard and haven’t needed one since the Chordoma was removed. In fact I have only suffered with a few headaches over a 5 year period, so all is good!



After all the treatment and ops, I could never imagine I would be the same person again, but by 2017 I was back dancing and enjoying life to the full! I am so grateful to the wonderful doctors and nurses at King’s College Hospital and all the team at the proton beam centre in Switzerland. I feel I have been given the best treatment possible! It has truly been a miracle that I am back to my old self, enjoying life and making the most of everyday. It has been 6 years since I had the tumour removed and I am still doing very well! I have an MRI at Kings college hospital annually or sometimes 6 monthly to keep an eye on me, which is reassuring!



My daughter Charlotte Kenward is swimming 5km in the River Adur on the 11th September and raising funds for Chordoma research through Just Giving. I am so proud of her.



I hope my story will reassure anyone starting out on this journey that there is light at the end of the tunnel! My family and friends have given me overwhelming support and prayers when I needed it most! A big thank you to everyone! I love you all xxxx



Kay Wilson

Hi!

My name is Sylvie and I would like to share a part of my story with you.

In August 2016, my boyfriend of 8 years proposed to me and we agreed to have a 2 year long engagement so that we could take our time in planning our perfect wedding... life was good!!!

Few weeks later, everything changed after I suffered from a stroke in September 2016.
After months of intensive tests, multiple hospital stays and MRIs to find out the reason of why it happened, the answer came through in December 2016, that I had a hole in my heart which had probably been there since birth - my neurologist at UCLH informed me that heart surgery would be the best option to reduce the risks of having another stroke and referred me to a cardiologist at St Bartholomew's Hospital.

Wow! What a scare that was - but after 3 months of intensive re-education and daily physio, I felt better and stronger and ready to move on with 2017!

As January 2017 arrived, I felt positive that I had gone through the worst and that things could only get better from now on and I could finally start working on planning our wedding for the following year....
Unfortunately that was short lived as on a follow up visit with my neurologist, he informed me that he had sent the previous MRIs of my head to one of his colleague at the NHNN in Queen Square London as he wanted him to have a look at something that seemed “unusual” at the base of my skull.

A week later I met with Professor Choi at the NHNN who told me that I had a tumour in my head but that it couldn’t be identified as yet so I would need to have another MRI in March to see if he could get clarification on what it was and take it from there.
A week after I had that second MRI at the NHNN, I was asked to come and see Professor Choi again who informed me that he had now identified the tumour as a Chordoma ... I made him write that strange name down as obviously like you all I had never heard of that word before!

And this is where my life with chordoma started in March 2017.

The unknown was very stressful and it was very frustrating not to find any information anywhere on what Chordoma was and how or if it would affect me. It felt like I had a very lonely battle ahead...
Thankfully I found the Chordoma Foundation who directed me towards their Facebook page where I was able to communicate with others all over the world and also met up with an other patient of Professor Choi who had gone through it all a few years before me.

The rest of 2017 was spent in what I call a “medical fog” with multiple hospital stays starting in May 2017 with the endoscopic endonasal partial resection of the chordoma, followed by a CSF leak and lumbar puncture and drainage, then meningitis in June, sinus infection in July, heart surgery (PFO closure) in August and 41 rounds of Proton Beam Therapy in America from September to December!

I was glad to see the end of 2017 when I came back to the U.K. and was full of hope for the new year to come as surely it could only get better ... right?!!!
Well it didn’t start very well as I spent 3 weeks in hospital in January 2018, fighting post proton hormonal issues!

Going through all this since September 2016 could have easily broke me down mentally but I chose not to let it and instead used this time to focus on preparing our wedding - which was also going to be a big celebration of life now.
I remember nurses from all the various hospitals I attended, checking my wedding plans and drawings with me in the middle of the night when the wards were quiet!

We got married in August 2018 and even had my Proton nurse from America here with us, as we had formed such a strong friendship!

Having a lot of post proton and post stroke issues has been really difficult as I am no longer able to do as much as I use to - so I’ve had to accept and adopt a “new normal”.
Since I no longer had a wedding to plan and I felt stronger, my doctor agreed that I could finally start going back to work on reduced hours from September 2018.

It took me a while to adjust and adapt to the new routine and some sort of day to day normality but I got there eventually - however it didn’t feel enough!
I had this “need” to focus some of my mental strength and energy constructively rather than taking them for granted - which is when I started researching the world of Cancers, researches and fundraising.

I was totally distraught finding out that there was so much injustice in the fact that Chordoma was left out of most of the national Cancer donations happening constantly all over the country (and the world) and the only way that Chordoma U.K. could carry on with researches was thanks to personal and direct donations.

I therefore chose to put my focus on spreading awareness on chordoma and finding ways to raise funds for Chordoma U.K. on every occasions that I could (by handing leaflets every where I go, organising raffles, sponsoring team Chordoma U.K. for the London Marathon ....)
I still felt that I could do more so I spent many sleepless nights going over things in my head until it hit me! We needed a National Chordoma Day to raise awareness all over the country and bring the Chordoma family together.

I got in touch with Gerald and Richard from Chordoma U.K. who invited me to discuss my ideas at their next trustees meeting and from then on, I presented my project at the “Meet the expert” evening which took place in January 2020 and agreed to coordinate it all and have our National Chordoma Day in September 2020 under the umbrella “Walking towards a cure” with the aim or creating national awareness and raising funds for the research into chordoma.
Due to COVID-19 this has now been postponed until Sep2021 so watch this space!

My journey with Chordoma is a bumpy one, full of ups and downs and a lot of uncertainties but it’s also one that has changed me in so many ways physically and mentally - and one that I want to use to help others starting or going through the same journey so that they do not feel alone or left out like I sometime did but so that they know they have a family that they can turn to - a Chordoma family.

I will end this with the motto that we have created for our soon to be National Chordoma Day:
Without funds - there will be no research
With research - there will be hope


Sylvie Leslie


To donate to Chordoma U.K just follow this link:

https://www.justgiving.com/fundraising/Sylvie-Leslie

In 2011 Martin then aged 69yrs woke with a pain in his lower back. As a man who was normally fit & well, he initially thought he had pulled a muscle, but after taking Ibuprofen for a few days with little relief he made an apt to see his GP. A week later when analgesics hadn't given any relief the GP referred him for physiotherapy. The wait for 1st apt was 9 weeks & as he did gain some relief from physio initially his GP then referred him to a sports physio gym which turned out to be just circuit training. This set him back again.

I then went with him to the GP & requested / demanded a 2nd opinion; ( I worked in the nhs & requested he saw Mr Brad Williamson, a highly respected spinal surgeon at Salford Royal hospital). We saw him privately 2 days later where an mri showed he had a mass at L3/4 which was suspected to be a haemangioma. Initial treatment was oral medication ( heart medication which was being trialled as it had been shown to shrink tumours) which did in fact shrink the mass over a 4 month period. However in Feb 2012, Martin started suffering severe pain ongoing over 24/7 which was not relieved with any analgesia, he was in agony & which quickly progressed to loss of use of his legs. He was admitted to hospital urgently under Mr Williamson & endured 13 hours in theatre where 90% of the tumor plus L3 & 4 were removed, 10% of the tumour was wrapped around the spinal chordoma was left in situ. Titanium rods & a cage were inserted & cadaver bone was grafted. The doctors told us that it wasn't a haemangioma. But they didn't know what it was. It was 8 days later that a diagnosis of chordoma was made - only one of the professionals had seen/ heard of chordoma before that. After 11 days he came home unable to use his left leg - (his femoral nerve had been squashed behind a retractor when the went in via his abdomen after the spinal wound had been sutured). It took 6 months before he could walk without crutches & a year before walking unaided. Meanwhile, once the wounds were fully healed, Martin attend the Christie Manchester & had 36 sessions of radiotherapy (he was turned down for proton beam therapy). He has worked hard to get back to full fitness & still undertakes twice daily walks with the dog.

In July following his annual mri, his consultant at the Christie, stated he was now considered to be "officially in remission" despite still having some residual tumour left which may start growing again at some point. 8 years on we count our blessings. It has not been an easy ride but we have moved on from making each day, then each month count. We now dare to think ahead & book holidays 1 year hence, hoping we're not tempting fate. Martin feels so grateful that he has a lumbar chordoma rather than sacral or clival. This is a horrible disease for those fighting it. As a carer I have so valued the support available once we found initially the Chordoma Foundation & latterly Chordoma UK. My hope is that we will soon be able to attend & meet others at a conference in the UK.

MY CHORDOMA STORY

It started sometime in 2000 when I felt a pain at the bottom of my back when I was sat down. After about four weeks the pain was gradually becoming worse so I decided to see my doctor. After an examination he didn’t know what was causing of the pain and he prescribed Ibuprofen tablets to ease the pain.
A month later with the pain not getting any better I decided to look at alternative methods to ease the pain and started by having a series of sessions with a Physiotherapist. The Physiotherapist advised me that it was a ball of matter at the bottom of my spine and after a few sessions suggested that I made an appointment with his friend who was into Reiki.
After a few sessions with the Reiki Therapist she agreed with the Physiotherapist that it was a ball of bad matter at the bottom of my spine.
After approximately three months of sessions of Physiotherapy and Reiki and my back showing no signs of improvement I decided to stop the treatment.
After months of doing nothing to find a solution for my back pain I decided to seek the help of a Chiropractor.
After a few months of sessions with the Chiropractor and my back showing no signs of improvement and actually the pain was getting worse I decided to end the sessions.
By now I was feeling excruciating pain in my lower back when driving and sitting down and decided to try acupuncture combined with Chinese herbal remedies. Again after a few months of acupuncture and no sign of improvement I decided to end the sessions.
After the Acupuncture treatment I noticed a slight swelling in the area where the pain was coming from but just thought that this was due to the suckers being used during the Acupuncture treatment.
By now five years had passed since my first appointment with my doctor and it was my daughter Gemma who suggested that I went back to see my doctor and demand further investigation into what could possibly be causing me so much pain.
August 2005 – Doctor makes an appointment for me to have an MRI scan at Warrington Hospital.
Two weeks after the MRI scan Gill and I returned to the hospital for my results. We sat in the examination room when the specialist and two students entered the room and the specialist put a negative up to the light box and immediately takes it back down and the three of them leave the room.
Gill and I had noticed a large circle on the negative to the base of my spine before it was taken away and we look at each other in horror.
The specialist and students return to the room five minutes later and tells us that I have a ball of matter the size of an orange attached to my coccyx and that he was referring me to an orthopaedic hospital in Birmingham for further tests.
One week later we received a letter from Royal Orthopaedic hospital in Birmingham asking me to attend the hospital whilst a biopsy is carried out.
Following the biopsy was the longest two weeks of our lives as we waited for the results.
Two weeks later we received a letter asking me to attend the Oncology Department for further scans. At the time Gill and I did not know what oncology meant, we were both in shock when we discovered that it meant cancer.
24th October 2005 – Attended the Royal Orthopaedic hospital for CT, MRI and CAT bone scans.
26th October 2005 - Following the scans we met Mr Grimer (who is now Professor Grimer) who was to become my surgeon. Mr Grimer explained that I had a rare form of cancer called a Chordoma and the only way to treat it was to have it surgically removed. As the tumour was very close to my bowel I would need to have a colostomy bag that may be reversed at some time in the near future if all went well.
He told us that it was a major operation and that it may take about 10 hours to perform, also I would have a very large wound running up my back. I would be in hospital for about three weeks and would need to learn to walk again. Also he advised that this form of cancer had a very high recurrence rate.
4th January 2006 – Went into theatre mid morning for my operation. Woke up from surgery mid afternoon in the ICU and shortly afterwards my wife Gill and then my two daughters Gemma and Gina was allowed in to see me, this was a very emotional time for us all.
Later that day Mr Grimer came to see me to see how I was feeling and told me that all went well with the operation.
The next week was spent in bed until I was well enough to learn to walk again. Back on my feet so my next goal was to walk up a flight of stairs so that I could be allowed home. Twelve days from arriving in hospital I was allowed home.
During my first month at home after my surgery I had my wound dressing changed and re packed every day at home, I was told that my wound was about 2” deep and required lots of packing each day. In the meantime I was getting used to my colostomy bag and started to go out for short periods at first then built up the time on my feet in stages. Finally after about six weeks from coming home I started to ride my bike again and gradually started to spend time in the office again.
All along since being diagnosed I was determined to stay positive and not to let it get me down, and in March 2006 I was examined by a specialist at Selly Oak hospital in Birmingham and had my colostomy reversed. During the procedure to reverse my stoma I got an infection in my bowel and I was not allowed home until the problem cleared up which took ten days to clear up.
April 2008 - Following a MRI scan it was discovered that my tumour had recurred. It was the size of my thumbnail and it was decided by my medical team that as it was so small my surgeon would try to remove it whilst in a CAT scan. When I woke up from the anaesthetic I was told that the operation was unsuccessful and that they would try again in a month’s time when the tumour had grown a bit more.
May 2008 – Had the second tumour removed successfully.
June 2011 – Following an MRI scan it was discovered that the tumour had once again recurred. Once again the tumour was very small but Mr Grimer decided to operate. Two weeks later I received a letter from Mr Grimer saying that he was please with the operation and that he had removed a lump around the area where he thought the tumour was. Following my three monthly MRI scan after my operation it was discovered that the tumour was still present and had in fact been missed due to the size of it. Mr Grimer decided to let the tumour grow sufficiently so that he was confident of locating it during surgery.
July 2012 – Had third tumour removed successfully. My medical team decided that it was highly likely that the tumours may keep recurring and it was decided that I was a good candidate to be considered for Proton Beam Therapy and that we would be applying for funding from the NHS as the treatment is not available in the UK and needed to be carried out in Florida. It was an anxious wait to see if the treatment had been approved by the NHS.
November 2012 – Received the fantastic news that our application for funding had been approved and that in January I was being sent to Florida for Proton Beam Therapy.
3rd January 2013 – Boarded a flight to Florida to undertake Proton Beam Therapy.
January to April 2013 – Spent three months in Florida to undertake Proton Beam Therapy.
My wife and grandson came out to spend some time with me for three weeks as this was the maximum that Liam’s school would allow him to have the time off school, we had a fantastic three weeks but it was a very sad time for me once they returned to the UK and I was on my own once more. Glad to say that Proton Beam Therapy will be available in Manchester and London in 2017 as it’s a fantastic treatment with little side effects, I believe that one day it will be the cure for cancer.
October 2013 – Scan all clear.
October 2014 – Scan all clear.
October 2015 – Scan all clear. During my consultation with Mr Grimer following this scan I told him that I had read some bad things about chordomas and that it was an incurable form of cancer, his reply to this statement made me feel fantastic, he said “Gary if there was ever any evidence that chordomas can be cured you are the living proof”.
Following this scan Mr Grimer wrote to my doctor which stated the following, “It was a pleasure seeing Gary today more than 10 years after I first met him with a chordoma of the sacrum. He remains completely symptom free and has made a very good recovery following proton therapy he had to the sacrum back in 2013. He has no bladder or bowel problems and he is otherwise symptom free” the letter concluded with the following sentence, “there is a very good chance that he has now been cured.
My inner thoughts during my journey.
Throughout this journey I have always remained absolutely positive that I will beat this cancer. I am eternally grateful to my wife Gill who has shared this entire journey with me and has always been with me during my treatments, consultations and scans and has been a great support for me. Whenever I have had to stay in hospital in Birmingham she has always stayed at either the hospital or local hotel so that she can be by my side as much as possible. I sometimes wonder if she actually realises how much I appreciate her love and support and I can’t thank her enough.
I am also grateful for the love and support from my two daughters Gemma and Gina, grandchildren Liam, Leah, Lexie and Lacey.
At times when I have read bad stuff on Google I have contemplated death and have always shared my thoughts with Gill who has always made me feel better immediately with her love and encouragement.
I now look at myself as a cancer survivor and would like to share this story with other people diagnosed with chordoma and show them that I am living proof that it can be defeated and that people should remain positive at all times throughout the journey.
Here’s to the future – Gary Shaw-Binns

Pass The Parcel.......

I write as someone who has witnessed my wife’s experience dealing with a pernicious disease and my observations in navigating the Healthcare system in the UK. This is an extremely truncated version of events and excludes many related hospital stays/ treatments/investigations.

I suspect our story may resonate with some in what appears a postcode lottery for a Sarcoma treatment system which in my opinion may be described as indifferent at best and inept and inadequate at worst.

In an attempt to simplify the story I have produced a table of the hospitals involved and have not personalised an impersonal system. In my experience the senior clinicians have feet in both camps and flit between the Private and NHS sector.

In the interest of brevity I will ignore the countless circuitous hours spent on the phone trying to find information from the respective MDTs /CNS/PA s etc or indeed the times in A&E at “A” who were incapable in this digital age of obtaining information from any other part of the system.

I am a retired Business Manager (with a now state owned Bank) having spent 40years mentoring businesses from start up to those turning over millions of pounds. I have personal experience of the internal politics of a multinational organisation and some idea of how an efficient business should be run by way of administration, communication and customer service.

Hospital Status Bone Sarcoma Team Distance from home

A NHS /Private No Local
B Private No Local
C Private No 50 miles North
D NHS No Soft Tissue (1 Regional) 40 miles North
E NHS No Soft Tissue (2 Regional) 45 miles South
F Private No 45 miles South
G NHS Yes (3 National) 160 miles East
H NHS Yes (4 National) 110 miles East

My wife experienced lower back pain and the GP diagnosed Coccydynia with the usual pain killers. The problem of course continued and a subsequent X ray revealed all was well.
Fortunately my employment provided Health Insurance and the GP referred us to “B” who confirmed Coccydynia and arrangements were made for a pain killing injection. The first injection did not work so a little while later a second was administered.

On 26 June 2007 I bought the Daily Mail newspaper and didn’t find the time to read it. The next day my wife was about to bin it, but thought she would thumb through to see if there was anything of interest to her. In the health section an article caught her eye “Doctors ‘cooked’ my spine tumour – now I am pain free”
The article detailed revolutionary treatment called HIFU for a rare cancer Chordoma at a hospital part of “H” group. The patient’s symptoms mirrored my wife’s.
We contacted “B” and whilst advised it was highly unlikely hers was Chordoma to placate us a MRI scan was arranged.
The MRI revealed a lesion, the biopsy confirmed Chordoma. Surgery was the recognised treatment and the work at “H” unproven and purely experimental. We were guided by the experts.
The operation to remove her coccyx and part sacrum was too risky for “B” so took place at “A”.
A complete excision was made, but with a poor margin and for some reason there was a delay in our referral to “C” who arranged for 6 weeks of radiotherapy at “D”.

There was a recurrence in 2010 “B” referred her to “F” where further surgery was undertaken followed by further 6 weeks radiotherapy at “E”.

October 2011 saw a further recurrence when “E” decided it was now time to refer her to “G”

In November 2011 we made the round trip of 320 or so miles (my wife in a great deal of pain and discomfort throughout) to “G”
We spent I guess 10/15 minutes at “G” and were asked the following questions:
Why had she not been referred before?
Why were there no up to date images?
I bit my tongue.
Distance has never been an issue and as a layman reliant on professional guidance (something I was used to giving in the financial world) began to wonder at what stage and by whom we should have been directed to “G” or “H”.
In the circumstances another appointment would be arranged for a month’s time.

An appointment was arranged for December 2011 and a few days before Christmas set off at 06.00 on the 160 mile drive to “G” for an early morning consultation. Concern was expressed at my wife’s pain and discomfort and an un-planned MRI scan took place that afternoon. We arrived home mentally and physically exhausted at 22.30 with the news still ringing in our ears that my wife had a previously undiagnosed serious problem with one of her kidneys that required urgent attention. We were given a letter to hand to our GP the following morning and “G” would contact “E” with their findings. Nothing could be done by “G” until the kidney problem was addressed by “E”.

Not the best Christmas ever as “E” appeared to have closed down for the holiday period. Early in 2012 we visited “E” who promptly referred us back to “A”. We visited “A” who confirmed on the 8th March that only one of my wife’s kidneys was actually working and nothing could be done. What happened to January and February?

We never returned to “G” as during one of my many phone calls trying to find out what was happening we learnt from an unexpected source that my wife’s tumour had become inoperable. This was a shock in itself and raised further questions about patient compassion.

During this period the Cardiac Team at “A” literally saved my life after suffering what they termed ” a significant heart attack.” To be fair I have nothing but praise for this part of the Healthcare System and the backup I have received since first class.

It transpires that “E” and “G” had trouble communicating with each other and in view of my health problems left it to our GP to re establish contact with “E” who arranged further palliative radiotherapy.

Now convinced (and it’s not just a case of throwing even more money at it) the system was incapable of looking after my wife’s best interest I became more questioning and pro active.

Had “E” considered Imatinab? No they had not, but they would look into it. Unfortunately investigation revealed it would be unlikely to be of any benefit.

In June 2013 “H” announced via the Chordoma Foundation (USA based) that they were recruiting for trials in the UK for HIFU as a possible treatment for Sacral Chordoma . I contacted “H” who responded immediately telling me medical etiquette dictated I couldn’t approach them direct so I contacted “E” who needless to say had no idea of the work being carried out at “H”.

In July 2013 “E” contacted “H” and in October 2013 we heard from “H” that they may be able to do something, but needed a MRI scan. We visited “H” for the MRI and in November 2013 were advised that due to size and position of the Chordoma they would be unable to help.

Ironically my wife recently developed a mysterious spot or lesion as it’s known in the trade and to meet Government targets our GP said the quickest way of dealing with this was to refer her to “A” who on examination of course referred her to “E”!

My wife now suffers severe mobility and pain issues and thankfully the local district nurses and hospice (a well run local charity) are in position to pick up the pieces of our fragmented Healthcare system. No arrangements are in place with ABCDEFGH for her ongoing monitoring and it is left to me keep an eye on the positive developments now being seen in Chordoma research both here and abroad. It concerns me that not everyone has the ability or is in a position to do this.

My name is Sue.. i'm retired and in my early 60's.. September 2012 my chordoma journey began..on arriving in France going on holiday, i noticed the horizon had a weird watery look, and as we approached our destination in Spain i had strange double vision when i looked left...nothing else..having thought.."should i cut short this 3 month stay and go home, we were struck by a terrible flood and went into shock.. so in mid December after cleaning solidly and sorting the big problem we arrived back in the uk.. Saw my GP (M.D. General Practitioner) straight away before Christmas, an MRI and CT scan and visit to neurologist told me I had a shadow on the bone.. huh!! Something to do with an infection to a route canal, this had caused me probs for a while...But straight after Christmas i had a call from a neuro surgeon at Southampton Hospital.. He said come in, in 3 days time and we will get rid of this "thing". So still non the wiser i found myself admitted and on the morning of the op, he visited and showed me the MRI. I thought this is no shadow, struck quite dumb and shocked, I underwent transnasal surgery. No problems and home in 3 days. He said the word chordoma; never heard of it and also he said be prepared to go abroad for treatment. So I recovered well and did much internet exploring and yes like all of us became an expert on the subject!! Met with my oncologist and he repeated the fact that I would need treatment abroad. Before that I needed a further debulking of the tumour in the base of my skull and behind my eye, in the cavernous sinus, to reduce it even more - that done we were off to Jacksonville, Florida by the middle of July, stunned by what was happening. The Florida Proton Centre was incredible. Very sociable, met other UK patients and as the treatment took up less than an hour a day we were off exploring - the NHS treated us proud. and we had none of the organising to do as all was done for us. We were there 11 weeks in all - 41 daily zaps with a mask, easy and not a problem, just felt tired, but it was hot that time of year. I had my first scan at Christmas 2013, showed the tumour was the same, no new growth.. 2nd MRI June this year (2014). also no new growth. I feel ok, just tired and try not to over do things and getting on with my retirement. I am enjoying raising money for the Chordoma UK research team. In June I flew to Frankfurt for a conference on the subject and thoroughly enjoyed it. So, hoping to keep well and carry on with life as long as possible and enjoy the grankids - no good worrying about what might happen. I have much faith in my doctors and long may it last, I think i have been lucky not to have headaches or any pain which can be so debilitating. My double vision after the 2nd operation and the deafness after the treament is now normal. Thank you doctors and surgeons, you have treated me well..

My name is Martin & I would like to share my story which entailed a long pathway through misdiagnosis to correct diagnosis in the hope that it may help others undergoing this experience

Having always been fit and active requiring very little in the way of health intervention during my life, it came a a surprise when in February 2011 (aged 69 yrs) whilst out walking the dog, I suddenly experienced a sharp pain in my lower back which caused me to stop walking for a few minutes.
I took anti inflammatory drugs for 2 weeks with no effect - so made an appointment to see my GP who diagnosed a pulled muscle and prescribed more medication - which had no effect. He then sent me for an X-Ray which showed nothing untoward and I was then referred to an orthopaedic specialist practitioner at the local hospital who diagnosed a partially prolapsed disc and prescribed a course of physiotherapy which didn’t help much - this was followed with a 4 week course of advanced physiotherapy (supposedly to strengthen my spine) which was in fact just circuit training with back exercises included. This made things a whole lot worse although I completed the course, returned to the GP & was prescribed stronger analgesics and told to see how things went! All this took a number of months.

In August 2011 My wife & I went on a cruise to Norway and during the last part of the cruise, one night I collapsed with the most severe pain I had experienced. I was was transferred to the ships medical facility and put on an IV Paracetamol drip & given strong analgesics. The ship docked in Southampton the following day & I was transferred home and advised to see my GP.

My wife then attended the GP ( different one) with me and insisted on a second opinion with a spinal surgeon and an appointment was made for us to see MR B. W. 2 days later at a private hospital. What a change we experienced, after a thorough examination, I had an MRI scan whilst we were there & he telephoned a week later with the news that I had a tumour which appeared to be a heamangioma. He saw me the following week and explained that whilst this tumour was benign, surgery was not recommended because of the risk of extensive hemorrhage & he started me on a drug which although licensed for heart problems had been found to be beneficial in reducing the size of these tumours. A further MRI 3 months later showed there had in fact been a reduction and the tumour had shrunk, the pain was also well controlled and not as intense.

After 6 months (Feb 2012) he gave the all clear for us to travel abroad for a holiday. Disaster struck on the second day when my legs collapsed and I was unable to walk. Unable to get an early flight home, we hired a wheelchair & stuck it out for a week.
The pain quickly became unbearable despite a number of pain killers including large doses of Morphine and a further MRI showed the tumour was growing again and pressing on the spinal chord nerves. I was admitted to Salford Royal NHS Trust for surgery on March 13th 2012 - still under the impression this was a haemangioma and with warnings that I may well bleed to death on the table! - But, the pain was so excruciating, I would have agreed to anything.
I had excision of L3 & 4, + 90% of the tumour - the remaining 10% was left as it was wrapped around my spinal chord. Mr W then inserted two titanium rods to hold up the spine, surrounded the area with a mesh cage which was filled with cadaver bone chippings. 13 hours later I woke up in recovery and after a further 3 hours was transferred to ICU to recover.

The following morning I realised I was unable to feel/move my left leg and it transpired that the nerve had been bruised/caught under a retractor in theatre for a number of hours and I would have to wait and see if feeling returned.

Two days later I was informed that the tumour was not in fact a heamangioma but something very strange which looked suspicious and probably malignant and we would have to await the lab results for identification of the type of tumour. Meanwhile, as spinal tumours were usually secondary to others, I would be scanned again looking for a primary elsewhere. These scans revealed no other tumours in my body.
I remained in hospital for 3 weeks, recovering and having physo, some feeling started to return to my leg, but I was unable to walk without crutches and was advised it would take up to 6 months to recover strength in the leg.

During that time it was by the Grace of God that a young female oncologist (Dr T) who visited Salford Royal Hospital from The Christie Hospital ( World Renowned Cancer Hospital in Manchester) weekly to investigate any spinal tumours occurring in urology patients (I had previously had a benign enlarged prostate operated on), who, after looking at my notes/scans, realised it may be a chordoma - she was correct and my after care then transferred to her at the Christie Hospital.
This was a very frightening time, as we knew nothing about chordoma and my wife was desperately searching the web for information

It took 6 months for me to walk unaided with a stick and to recover my strength. During that time my wife was providing all my physical & emotional care 24/7 and, although she had many years of nursing experience, felt at times overwhelmed. My GP provided fantastic support to both of us, visiting me twice weekly initially, then weekly; he gave us his mobile phone number in case morphine and gabapentin doses needed titrating and was happy to liaise with the hospitals to get appointments changed or speeded up.

Also during this time, Dr T submitted a bid for funding for me to travel abroad to undergo Proton Beam Therapy but unfortunately this was rejected as I had too much metalwork in my back hiding the remaining tumour. Therefore the only option available to me was radiotherapy. I started this in November 2012 for 30 essions which were completed on December 2012.

During 2013 the nerve pain in my leg subsided, my strength increased to a stage where I was walking unaided and undertaking my normal lifestyle once again. 2 years on, I walk approximately 3 miles per day, I drive and even cut the grass again! I am off all medication and my only remaining symptom is an intermittent ache down my left thigh.

I see my surgeon annually for check ups and my oncologist 6 monthly following my MRI scans which to date fortunately have shown no regrowth or change since the one post op in 2012. Dr T has agreed that I will continue with 6 monthly MRI scans for 5 years and then annual scans for a further 5 years.

I feel very fortunate that despite the pysical and emotional turmoil I have undergone that my chordoma was lumbar, that despite initial misdiagnosis & frustration with the Primary Care element of the health service - my care since then has shown how our National Health Service is 1st class. My needs have been well managed by a wonderful oncologist and, that through the Chordoma Foundation & Chordoma UK we are in contact with many wonderful people who provided support and friendship over the last 3 years and without who’s advice we would not have coped so well - thank you all.
Meanwhile, we get on with our lives and take every month as it comes.

My name is Pete and I live in the UK. I'm 43 and this is my story. At the start of 2014 I had backache. I went to my GP when the pain started going down my right leg. They said at first it was just sciatica, and gave me painkillers saying it should clear up soon. When it didn't I went back and they referred me to a spine expert, now thinking it could be a herniated disc pressing on my nerves. Took about six weeks to get an appointment to see the spine expert, who referred me to the hospital for physio and an MRI scan 'just to be on the safe side'. The physio treatment didn't seem to help much. Six weeks later I had the MRI on a Saturday morning. On the following Wednesday I got a call from my GP asking if I could go and see him. On the Thursday I got a call from the spine experts office asking if I could go back and see them. On the Friday I got a call from the hospital asking if I could go and see them. Thinking it sounded serious, I left work an hour early and headed for the ward number they'd given me over the phone. Chemotherapy and oncology. A doctor and the nurse who phoned me told me that there was some kind of cyst growing in the lumbar 4 bone in my spine. I was admitted that night and after several more MRI and CT scans, plus blood tests, I was transfered to Leeds hospital for surgery. The doctor said because the cyst was pressing on my nerves they would go in through my stomach to my spine, remove the bone, then roll me over and add two bars to fuse L3 to L5 together. What should have been an eight hour operation actually took twelve because they were being extra careful with my stomach. I had low blood pressure for a couple of days after the op and then there were questions on if my stomach was working correctly or if there was permanent nerve damage from the cyst. Samples of the cyst were sent off to some specialists in Birmingham and a few days later I was told it was a chondroid chordoma, which is very rare in itself, but even rarer to find it where I had it in my spine. It's now almost three weeks after the op and everything seems to be working. I feel like I'm learning to walk all over again as my back is stiff after the fusion. My left thigh feels numb occasionally but I've been told this might be due to a grounding pad for the cauterization knife they use in some surgeries, and I had one on my leg for about ten hours! I've been told that I'll need proton therapy and more MRI scans to keep an eye on my spine but for now I'm concentrating on recovering from the biggest operation I've ever had.
Thank you for reading !

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