Carl's Fight!

Soft Tissue Sarcoma (STS), Above The Knee Amputation (AKA) and metastasis spread of the malignant cancer through the blood to the lungs. I have detailed below the history of my fight against this terrible decease and my struggle with life as a reminder to all who may read this document. This I have done in the hope that someone will take up the fight and highlight the problems and battles for people who have been touched or suffer from cancer. More is needed to highlight STS, as this is a very rare and unforgiving cancer with the outcome for 90% of cases is death. More research is needed and more people need to highlight this problem as many people have never heard of STS. If only I had more time and energy to demonstrate and campaign then I would, but I feel it best to spend my time doing what I need to do before it’s too late. Spending time and doing things with loved ones is the most important thing at the moment, every moment with them I cherish. 1. My name is Carl Jones. I am a married man. I am 46 years of age. I live with my second wife and her child by her previous marriage. I have three children from my first marriage but they don’t live with me. 2. I am an architect and I am employed as the design manager. 3. On 28th November 2006 I was diagnosed as having a soft tissue sarcoma in the calf of my left leg. The recommended treatment was amputation of my left leg. On 6th December 2006 I underwent an above knee amputation of my left leg. Earlier in the year, in August 2006 I was referred to Professor Mafuli, orthopaedic surgeon. I believe that Professor Mafuli failed adequately to investigate my symptoms and, as a result, the soft tissue sarcoma was not diagnosed as early as it ought to have been. I have been advised that if the tumour had been identified earlier then it may have been possible to reduce its size by chemotherapy so that it could be removed avoiding the need for amputation of my left leg above the knee. The grade of the tumour certainly would have been less then grade 3 and maybe the survival rate increased. 4. I suffered no symptoms affecting my left leg until July 2006. Some time early July I was squatting in the garden. I felt a pain around my left ankle in the area of my Achilles heel and calf area. I wondered if I had pulled a tendon. I waited for the symptoms to subside. Instead of getting better my ankle and leg got worse. My ankle and lower leg became very swollen and warm. 5. By the beginning of August 2006 I was concerned. I went to see my GP. I saw Dr Leyfroy of the Doctors at Stoke Medical Centre at Honeywall, Stoke-on-Trent. My GP prescribed anti-inflammatories. She advised that I should keep my leg elevated. She thought I had suffered a pulled muscle or a strained tendon. 6. At that time I was walking without any difficulty. I had no particular pain. I had no obvious bruising but my ankle and lower leg were swollen. I took the anti-inflammatories. They didn’t do any good. Instead of improving part of my ankle and foot became numb. 7. After two weeks I went back to see the GP. I went back on, I believe, 15th August 2006. The swelling was getting worse. My GP examined my leg. I asked for a referral to a specialist. She referred me to Professor Mafulli at the North Staffordshire Nuffield Hospital. 8. I have the benefit of private health insurance with AXA PPP. On 16th August 2006 I went to see Professor Mafulli at the North Staffordshire Nuffield Hospital. Professor Mafulli is an orthopaedic surgeon. I believe he has an interest in sports medicine. 9. Professor Mafulli examined my left leg. He noticed the swelling around my ankle. He observed me walking up and down the room. He could see that the swelling was spongy as though my ankle and leg had developed water retention. 10. During the course of my consultation with Professor Mafulli I asked him if my foot was causing my leg to swell or if my leg was causing the swelling in my ankle and foot. Professor Mafulli couldn’t say. He told me he wanted to refer me to another specialist because he thought I had a trapped nerve in my foot. He recommended that I should have nerve conduction studies. 11. During the week commencing 19th August I went on holiday for a week. The condition of my ankle and leg didn’t improve while on holiday. 12. The week after my return from holiday I went for nerve conduction studies. I also had an ultrasound scan of the tendon in my left ankle. Professor Mafulli also arranged for me to see a consultant vascular surgeon to look at the blood flow to my left foot. The ultrasound scan was done at the North Staffordshire Hospital. The nerve conduction study was done at Sandy Lane. 13. On 10th October 2006 I went back to see Professor Mafulli. He had the results of the tests. My leg by this time was more swollen. The swelling was in my lower leg around my ankle and above it. Professor Mafulli then said he wanted to do an exploratory operation to release a trapped nerve in my foot. I asked again if he was sure what was causing my ankle to swell. I asked him to tell me if the problem was with my leg or with my ankle. I signed consent forms for an exploratory operation and then I waited for details of the date. 14. I subsequently received details of a date for the operation in late October. On the Thursday before the operation I got a phone call from the Nuffield Hospital to say that Professor Mafulli was going on a month’s sabbatical because his wife was having a baby. I was given a choice as to whether to wait for him to return from his sabbatical or to see someone else. I elected to see another consultant. 15. I then received appointment for the 31st October 2006 to see Robin Rees consultant orthopaedic surgeon. I saw Mr Rees at the North Staffordshire Nuffield Hospital. He examined my foot and leg. He was not happy with my leg at all. He sent me for an MRI scan at Sandy Lane. I went for the scan a matter of days later on the 2nd November 2006. 16. On 7th November 2006 I went back to see Mr Rees. He showed me the results of the scan. The MR scan showed a mass in my calf. Mr Rees thought the mass may have been blood. He told me that he wanted to speak to the radiologist to get more information about it. 17. On 9th November 2006 I received a telephone call from Mr Rees. He was very concerned. He asked me to arrange a meeting with Mr Grimer, an orthopaedic surgeon at the Royal Orthopaedic Hospital in Birmingham. He explained that the need to contact Mr Grimer was so urgent that if I could pick up the scans from him I could go and see Mr Grimer the same day. Mr Rees stressed that we needed to go urgently. Therefore I contacted my wife Catriona, who had to come away from work, to accompany myself to Birmingham. 18. The same day I met Mr Grimer in Birmingham. He was also concerned about my leg. He took a biopsy from the lower part of my leg using a skewer to take out a “core sample”. It was excruciatingly painful. He took two samples. Afterwards it was so painful that I couldn’t walk. I had to have crutches to move about and was prescribed strong painkillers. 19. Following the consultation with Mr Grimer I stopped work. I was unable to cope with work because I was in pain and could not put weight through my leg. On 14th November 2006 I was contacted with the results of the biopsy taken by Mr Grimer. He told me that the results were inconclusive. He made arrangements for a further open biopsy under general anaesthetic. I went to the Royal Orthopaedic Hospital in Birmingham on 20th November 2006 for the second biopsy. 20. On 28th November 2006 I received a call from Mr Grimer with the results from the biopsy carried out under general anaesthetic. Mr Grimer told me that the results were bad news. He told me that I had a soft tissue sarcoma. Mr Grimer told me that, in his opinion, amputation was the preferred treatment option. He said that I should go down to see Dr. Peak, a consultant oncologist to discuss treatment options. 21. I went to see Dr. Peake the same day. I discussed the options with him. He told me that the cancer could spread to my lungs. His opinion was that, because of the size of the tumour, he didn’t think that chemotherapy would be successful. The object of chemotherapy is to shrink the size of the tumour sufficient to make it small enough to be removed by surgery. 22. In order to make sure that the tumour had not spread to my lungs I had a MRI scan the same evening. Dr. Peake told me that if the cancer had spread then there would be no point in operating to remove the tumour from my leg. After the MRI scan I was told that the cancer had not spread to my lungs. After discussing the treatment options with Dr. Peake I agreed to have an operation to amputate my left leg. 23. I went into the Royal Orthopaedic Hospital in Birmingham the following week. I had the operation on 6th December 2006. My left leg was amputated above the knee. 24. When I spoke to Dr. Peak on 28th November he explained that the only way to treat sarcoma is by removal of the tumour. He told me that if the sarcoma is diagnosed early enough then chemotherapy could be used to shrink the tumour before an operation is carried out to remove it. He explained that when operating on sarcoma they have to give a 20% safety margin. That means they have to remove tissue from around the area of the tumour. He explained that the earlier the diagnosis the less invasive the treatment. I was told that the tumour in my case had grown to such a size that it was unlikely that chemotherapy could shrink it small enough for it to be removed by surgery. Because the tumour was not operable then amputation was the only treatment recommended by the Doctors. 25. After the operation on 6th December the Doctors carried out histology tests on the tumour. The histology results showed that the tumour was a high grade tumour. I have been advised that I now need chemotherapy to prevent recurrence of the cancer. 26. I believe, from what I have been told by Dr. Peake, that if the tumour had been identified earlier I may not have needed an amputation. At least, I may not have needed an amputation above the knee. I have been told by Dr. Adab, consultant oncologist at the North Staffordshire Hospital that the tumour was a fast growing and aggressive tumour. I therefore believe that the delay between early August and late November before the tumour was diagnosed may have had a bearing on the treatment I have received. 27. At this point I knew that my original diagnosis for a pulled muscle or trapped nerve in my leg was wrong. Therefore my GP Dr Leyfroy and Professor Mafulli had got it very wrong and had misdiagnoses my illness. I wrote to Mr Muflli regarding condition and he did reply in writing admitting he got it wrong and confirmed he had misdiagnosed my condition. This I felt very angry as Professor Mafulli was a qualified orthopaedic surgeon and should have suspected something and investigated further. Even an x-ray or scan in the first month could have made all the difference. 28. In January 2007 I sort the advice from a clinical solicitor regarding the misdiagnosis and he confirmed that due to cost it would not be worth pursuing. He went onto say that the cost of proving cause over delay etc would out way the reward. So I decided not to pursue Professor Mafulli for compensation. 29. I am currently absent from work on sick leave. I have no idea when I will be able to return to work. I am hoping that I will soon be able to try to do some work from home. My employers are making arrangements to send me an automatic car so that I can regain some of my independence. At the moment I don’t know how I will feel once I start chemotherapy. I don’t know if I will be able to work during the chemotherapy. I have to have eight cycles of chemotherapy every three weeks. The chemotherapy commences next week. I am expecting it to continue until June 2007. 30. My wife, Catriona Jones works as head of credit management. She has been off work since 13th November 2006. Her employers gave her one month’s compassionate leave during which she was paid. Since 8th December, however, she has been away from work on unpaid leave assisting me with my recovery. 31. My wife, Catriona Jones has now returned work, but only for a maximum of 2.50 days per week, as she needs to provide care for myself. Catriona started back in early January 2007. 32. I started to attend the limb centre at the Hayward, in January 2007, in an attempt to have a permanent artificial leg fitted. This period was very difficult due to two things, one being my physical strength and adapting to walking with one leg and the other my mental state of mind dealing with life and my new disability. 33. I started my chemotherapy treatment on the 18 January 2007. Each cycle I need to stay in hospital for 2 nights. My first cycle was difficult as I had side effects, which caused problems to my chest. I had a CT scan of my chest to check for blood clots and underwent an Echo Scan to check my heart, all was clear. I had to stay in for a total of 4 nights. 34. My second cycle of chemotherapy was the 8 February 2007, again for 2 nights in hospital. This cycle went to plan, but I fell very ill the following week. I was taken by ambulance from my home on the 21st February 2007 to the North Staffordshire Royal Infirmary, Ward 1. It was found that I had a very bad chest infection. Whilst in hospital it was discovered from tests that I had become Neutropenic (the level of my White Blood Count had become dangerously low leaving me with mo immunity) which meant that I had to stay in isolation with regular injections to boost my blood count. I had to stay in hospital for 5 nights. I was released on the 26th February 2007. 35. Despite recovering from the chest infection I continued to feel unwell in my chest, with pains and found it difficult to get my breath and my heartbeat continued to race. Further tests whilst in hospital for the infection resulted in a diagnosis of a Pulmonary Embolism (blood clot) in my right lung. I was again taken into the North Staffs Royal Infirmary and treated on Ward 1 for the clot. Blood thinners were administered to help break up and dissolve the clot. After a week I was discharged and prescribed Warfarin for six months to continue to dissolve the blood clot. The level of Warfarin required had to be monitored weekly by a blood test taken either in my home by a District Nurse or at the local Outpatients. 36. Between my third cycle of chemotherapy in March 2007 and my sixth cycle in June 2007 the treatment went as planned. As a result of my low Neutropenic level after each cycle I had to remain in isolation at home, away from friends and family and unable to leave the house. Following each cycle I required a daily injection to boost my blood count. My wife, Catriona was taught to administer these injections by the District Nurse. 37. I found it very difficult to have regular visits to the Limb Fitting Centre at the Haywood Hospital to practice with my artificial leg due to the side effects of the chemotherapy. I was unable to receive a permanent artificial leg (cast) until the chemotherapy was complete in late June 2007. 38. Following the Chemotherapy and it’s side effects I was very weak for a couple of months but was recovering well by September. I started to attend the Limb Fitting Centre to practice on my artificial leg but at this stage I still had a temporary artificial leg and was told by the Prosthetist that I would not be able to have a permanent leg until the end of the year. This was due to my weight gain due to steroids taken during Chemotherapy and the associated changing shape of my stump. 39. By the end of September 2007 I agreed with my employer a Back to Work Plan which began with two half days per week building to a full week by January 2008. During this time I found it very difficult and began to feel pain in my stump. In November 2007 I was walking down my hallway at home and had excruciating pain in my stump. During a visit to the Royal Orthopaedic Hospital (ROH) it was confirmed that the muscle had become detached from the femur bone and an operation was required to correct this. At this point I was unable to continue working and was forced to take sick leave once again. 40. In September Catriona also agreed a Back To Work Plan with her employer and began working one day a week building to a full week by the end of October. Catriona found it very difficult coping with her senior management post and continuing to care for me and by the beginning of November was unable to continue and was had to take sick leave for stress and anxiety. 41. In January 2008 Catriona’s employer requested a meeting with her to discuss her continued sick leave. Catriona and I discussed the situation and although Catriona was reluctant to give up work we felt we had little choice but to accept the situation. Catriona finished work at the end of January 2008. 42. In early January 2008 I attended ROH for a routine 3 monthly x-ray of my chest. 43. In early February 2008 I was admitted to the ROH in Birmingham to undergo an operation to correct and repair my stump. During this stay as an inpatient I was given a CT Scan of the chest due to the report of the x-ray taken in January (that we were unaware of). The scan confirmed that the Cancer had metastasised in my lungs – the scan showed a number of nodules (tumours) to my left and right lungs. At this time it was not known what, if any, treatment could be offered. 44. The scan results were discussed at the weekly multi-discipline meeting at the ROH. Following this I received a telephone call from Mr Grimer who advised that I was being given an urgent referral to the Birmingham Heartlands Hospital (BHH) for their opinion as to see if they could operate to remove the tumours from my lungs. 45. Following the referral to the BHH I was advised to call Mr Rajesh (Thoracic Surgeon) to discuss my condition and to find my treatment options. I was relieved when Mr Rajesh confirmed that he was willing to see me and discuss my condition and possible operation to remove the tumours from my lungs. 46. Both Catriona and I found this a very stressful time. 47. During February 2008 I had finally recovered from the operation to my stump and was able to attend the Limb Fitting Centre for a cast of my stump to enable the prosthetist to build my permanent artificial leg. 48. In early March 2008 Catriona and I attended the BHH to see the Thoracic Consultant, Mr Rajesh, to discuss my condition. We agreed at the meeting that Mr Rajesh was willing to proceed with an operation firstly to remove tumours from my left lung with a later operation to remove tumours from my right lung. Mr Rajesh was unable to give a date for the operation at the meeting. 49. Within two weeks I received a letter giving an operation date and an appointment to undergo a series of pre-operative tests the week before the operation. 50. I was admitted to the BHH during the fourth week in March 2008 and underwent the planned operation to remove the tumours from my left lung. During my stay Catriona took delivery of my permanent artificial leg from the Limb Fitting Centre and brought it to me in hospital. During my hospital stay Catriona stayed in local accommodation while I was in the High Dependency Unit (HDU) for three days and thereafter she travelled everyday, balancing hospital visits with family and home. I was in hospital for 6 days. 51. In late April 2008 I was admitted to the BHH for the second operation to remove the tumours from my right lung. Catriona again stayed in a local hotel whilst I was in the HDU and again travelled between home and the BHH following release to the hospital ward. I was in hospital for 6 days. 52. In July 2008 following a routine scan at the BHH it was discovered that the cancer had returned to my lungs. Further operations were required but at this stage we had no dates for these. 53. In August 2008 we attended the BHH to discuss the operations with Mr Rajesh. It was agreed that the first operation, to my left lung, would take place at the beginning of September 2008. This operation took place as expected and several tumours were removed. It was agreed that Mr Rajesh would continue to monitor the left lung and have a further CT Scan in October 2008, this would enable the right lung to heal. 54. During this time it became apparent that due to my lack of exercise following the previous operations a ventral hernia had developed and required surgery to correct. This took place at the Nuffield Hospital in Newcastle-under-Lyme in October 2008. 55. In November 2008, having received no feedback from the BHH concerning the CT Scan in October 2008 I telephoned my GP for information. My GP contacted Mr Rajesh and discussed the CT Scan results. It was decided to re-scan in January 2009 due to little change of the tumours in the right lung. My GP telephoned Catriona to advise of this while I was in hospital recovering from my hernia operation. 56. In January 2009 I attended BHH for the routine CT Scan. The results indicated that the tumours had grown to a size that needed an operation to remove. We met with Mr Rajesh to discuss and agree the timing of the operation and it was confirmed that the operation would be scheduled in March 2009. 57. On 6th March 2009 I was admitted to BHH and the operation took place as planned on Saturday 7th March 2009. Following the operation Mr Rajesh confirmed that he had been able to remove all the tumours but the largest was the size of a grapefruit and was actually within the pluretic wall (lung wall). I was in hospital for 6 days. 58. Post operation meeting on Friday 27th March 2009 at the BHH confirmed that the operation site was healing well apart from a slight infection to the wound on my back. At the meeting it was also confirmed that the next CT Scan will be mid/late April 2009. 59. I attended the BHH for the CT scan in April as planned but now have to wait two week for the results and next appointment in May 2009. 60. In May 2009 I attended the BHH to discuss the scan results and the progress if any of the cancer in my lungs. The registrar confirmed that there was what looked like fluid to the lower part of the right lung. This was confirmed when listening to my chest that the lower right lung was quite and not filling with air. She went onto say that there was something suspicious on the lower left lung but wanted to leave it for yet another scan in June 2009. I asked about the fluid in the right and again they wanted to monitor this. 61. Between the appointments for May 2009 and June 2009 I was becoming more breathless which concerned me. 62. In June 2009 I attended an appointment at the BHH to see Mr Rajesh. I had a lung function test first, then I went to see Mr Rajesh regarding the results of the lung function and the CT scan results. Mr Rajesh confirmed that the cancer had spread rapidly through my lungs but could or would not explain why. He confirmed that the left lung fluid had developed to such a size it would be impossible to remove. Then he went onto the left lung and confirmed that the tumours growing were adjacent to my wind pipe and lower lobe. Again a very difficult procedure. The conclusion was due to my lung function only being 33% and the position and size of the tumours that an operation was not possible. Mr Rajesh would be referring me for alternative treatment with Dr. Peake. 63. During the last week in June 2009 I went to see Dr. Peake to discuss my options for the alternative treatment. At the meeting first we went through any developments with radio versus chemotherapy treatments. Dr. Peake confirmed that that were no radio treatments available and only limited new chemotherapy drugs available to treat metastasis of the lungs. He stated the best option would to have courses every three weeks with a new drug called Trabectedin (Yondelis). He stated that this drug can stop the cells multiplying and even in 20% of patients reduce the tumour size by 10%. He went onto to say there are no guarantees but we would give first of all three courses and see how it goes. If successful and things look good then we will continue up to twelve courses. Beyond that we don’t know at this stage if there is anything else out there. 64. Whilst waiting for my first course of chemotherapy my breathing and coughing worsened and during one spell of coughing I noticed a lump appear on my left shoulder blade. The lump was located next to the scar tissue from a previous operation, the local GP confirmed that it was likely to be tissue forced through the chest wall where the last operation, to remove the cancer, took place. This made sense, as the last operation in BHH they had to remove part of the chest wall to get at the cancer. This lump has not changed shape, size and gives no pain, so therefore not too concerned. 65. At the end of June the local GP decided to have various oxygen tanks and equipment delivered to home to assist with my breathing. This has helped particularly at night when my breathing can become difficult. 66. In the first week of July 2009 I had my first course of chemotherapy over 24 hours in Birmingham. 67. Side effects at the moment from the chemotherapy have been mainly feeling very tired and very out of breath. Looking at information supplied to me my side effects are very common so not too concerned. The oxygen at home is helping with by breathing. 68. Blood count was taken on the 10th July 2009 and all looks good and levels up. 69. Woke up on 11th July with a sore throat. Looked in the mirror and have white spots in my throat. Called the local GP and to discuss my condition. He confirmed it sounds like tonsillitis. I had a course of penicillin to combat the infection prescribed. Very concerned due to possible low immune system. Called Birmingham to confirm what is happening and they confirmed ok but report to them if any change. 70. Throat infection has now eased. My worry now is the reports on Swine Flue and the effects on people with underlying health problems. People are dying from this virus. Precautions are in place but it’s a worry, as the virus is spreading fast around the country. As yet no vaccine will be ready until September 2009. 71. 22 & 23 July 2009, had second course of the Yondelis chemotherapy. All went well. 72. Had an X-ray whilst in Birmingham and the results was positive. The treatment and combined drugs seam to have stemmed the growth of the cancer in the lungs. There looked to be a very slight improvement to the lung volume, only minor, but in the right direction, so positive news. 73. 25 July 2009, woke yet again with same side effects from the treatment and the throat infection is back. Same course of treatment with antibiotics. Coping ok with effects. 74. Breathing is better than last time following treatment so coping better and feeling brighter, so happy with progress. 75. Since being confirmed with metastases in the lungs in January 2008 my prognosis has changed to terminal and at this point I have not been given a life expectancy period but have been told there is no cure for my condition. The consultants will only operate to remove tumours from the lungs whilst size, number and position permits.