In spring 1994, I noticed a lump forming in my right arm, just above my elbow. I eventually went to see my Doctor in mid-September ’94. He sent me for a x-ray after examining my arm, the result of which was clear. The Doc. said that the lump might be fatty tissue and if it was still there to come back in four weeks. I went back at the end of October ’94, when he sent me to see a Specialist for a ‘non-routine’ appointment.
Within two weeks I was seeing a surgeon. He had x-rays and ultra-sound tests carried out. Again the x-ray was clear; the ultra-sound showed the lump had blood flowing to it. The surgeon operated on 5 December ’94 and excised the lump, which measured approximately 1.5″ x 1.25″. I was discharged after two days, with a follow-up appointment four weeks later. At this visit the surgeon, informed my wife, Anne, and I that the lump had been a ‘clear cell sarcoma’. Also, as a routine precaution, they were referring me to Clatterbridge Centre of Oncology. However, not to worry as the entire lump has been excised and that I will not need any further treatment.
I first attended Clatterbridge on 16 January ’95. The Oncologist informed us “that I had cancer and would need radiotherapy, which would last six weeks”. As you can imagine this shocked us, after being told the referral was routine and that we wouldn’t need further treatment. He also told us that the type of cancer I had was very rare and that most family Doctors wouldn’t see a case in their whole career. He gave me a ‘CT scan’ and a ‘MRI scan’, the results of these were that my arm and liver were clear but there was something in my right lung. At this stage, he said that there was no suitable treatment, as that my cancer type didn’t react to chemotherapy and that the only option available would be surgery. However, this wasn’t a realistic option as the item was so small, it would be hard to find to do a needle biopsy on it. Also, the operation is it self, life endangering and would only be carried out if there was no other option.
I had my radiotherapy daily from January to March, during which I continued working and the only side-effect I had was after the treatment finished, when my operation scar went all soft and pussy. I had a follow-up CT in April ’95, the result of which was that the lung was clear. I then had follow-up appointments quarterly with a further CT in October ’95, again clear. These follow-ups continued quarterly then half yearly all them going okay, with no problems found. In August ’97 the hospital changed my appointments to 12 months between visits.
In the following 12 months, my family suffered several shocks. My mother-in-law died in December due to breast cancer that had spread to her liver. In March ’98 my brother-in-law had an ‘aortic aneurysm’ and was diagnosed as having ‘Marfans Syndrome’. In April, I started having pains in my chest, which the Doc. thought was a virus of my chest muscles but to make sure I was sent for a chest x-ray. The result – my lungs were clear.
At the end of June I was still suffering, so I contacted Clatterbridge and re-arranged my check-up appointment for July. At this consultation, Anne & I talked to the oncologist about the family’s last twelve months. He gave me a physical examination and was quite happy. However, due to our worries he sent me for a chest x-ray, so that we could be convinced that I was okay. Unfortunately, the x-ray showed a shadow in the right lung, of about 1.5″ in diameter. I duly had a CT of my chest and a MRI of my arm over the next few days. At the follow-up appointment the next Monday, he informed us that the MRI was clear. However, the CT showed 2 lumps in my right lung and 1 lump in my left lung that concerned him. He was sure these were secondaries from the cancer in my arm. We were advised that Radiotherapy was not suitable, as the amount needed to breakdown the lumps would destroy my lungs first! Chemotherapy wasn’t suitable due to the type of cancer. The only realistic option was surgery.
We saw a surgeon two weeks later at The Cardiothoracic Centre, Broadgreen Hospital, Liverpool. During this appointment he advised us that he was concerned about 3 lumps in my right lung and 2 in my left lung. This meant having two operations, one for each lung. He would do the right lung and then about five weeks later do the left lung. On 3 September I had the operation on my right lung, when 10 lumps were removed from it. I was discharged six days later. I had the second operation on 15 October when the lower half of my left lung was removed and 11 lumps from the remaining top half were removed. I was discharged from hospital, again six days later; with the surgeon saying ‘if anything comes back, don’t worry we’ll simply remove them’.
Since the operations I have been having regular check-ups on a quarterly basis, alternating between both hospitals, with chest x-rays or CT’s, all of which have shown no recurrence of my cancer. At the first check-up I was informed that there is a very high probability that I will have more secondaries, unfortunately, they are unable to say when. Since the operations I have suffered breathlessness, pains/discomfort in my chest and back, very dry coughing and depression. My doctor says I would feel better if I could be told that the cancer would never come back! Which unfortunately is not going happen. Concerning the breathlessness and pains/discomfort, the doctors feel these may be post-operative. However, since March ’00 Clatterbridge have started seeing me bi-monthly and Broadgreen have decided to give me a bone-scan but are positive it will be clear.
Ray Britland, Wallasey, England (D.O.B.: 31 January 1960)
8 July 2000
Follow-up, July 2002
Following on to my original biography, which was written on The 8th July 2000, several things have happened that I feel, are worth telling you about.
I had my bone scan which as predicted was basically normal. Life progressed satisfactorily until around October 2000, when I started suffering headaches and had noticed a slight lump on my right forearm. The headaches progressed to the stage were I couldn’t bear lights on in the house, this was in December 2000. I saw my General Practitioner several times, who prescribed painkillers. I eventually saw my Oncologist in mid-December, who organised a MRI scan at Clatterbridge Centre of Oncology but dismissed my forearm as if it didn’t matter the only, date available for the scan was the 22nd December, with the results in the new year.
However, on Christmas Day I was rushed into Arrowe Park Hospital after having collapsed at home and was delirious. The hospital couldn’t get any information from Clatterbridge, due to it being Christmas. The hospital did a CT scan, told my wife that I had two large secondary brain tumours and promptly put me onto Dexamethasone steroids, which within hours relieved my suffering. To the extent that when my wife saw me the next morning, I was my old self, sitting up eating breakfast. She was so amazed she felt it was a miracle. I left Arrowe Park on 2nd January 2001 and went straight to Clatterbridge where my Oncologist informed my wife and I that I had two large tumours and many tiny tumours. For these the only treatment was radiotherapy to my whole head and to stay on the steroids. (I was slowly taken off the steroids by Easter 2001.) I was given fifteen days radiotherapy treatment, which made all my hair fall out. He also arranged a CT scan of the rest of my body, which showed that I had two more mets in my lungs. The brain tumours and lung mets were deemed inoperable. The lung mets might have a chance with chemotherapy but the type available affects your heart so I could only be given one course of treatment. It was decided that the chemo would wait until the mets were affecting my breathing, etc. The radiotherapy to my head knocked my feet from under me and I became wheel chair bound until about October 2001, when I was able to get around with two sticks. From January everything was all downhill, with the Oncologist eventually realising my right forearm was important, he sent me for a CT scan around April and I subsequently needed radiotherapy to my arm, right shoulder and neck. All the tumours being inoperable.
In May I became very ill and all the weight I had put on with the steroids just fell off me, I also needed a blood transfusion, as I had become very anaemic. I had a further two transfusions by October.
Since then I have been going from strength to strength, with everyone being surprised at how I am doing. Unfortunately, I found a lump at the top of my left leg, for which I had an MRI scan on Monday 8th April. Also my weight has started going down again. The decision following the MRI scan’s result was to operate on my left leg, this was done within a couple of weeks. The surgeon had to take out the whole muscle affected by the tumour. The pathology of the tumour showed that it was a metastases of my clear cell sarcoma. I am slowly improving following the surgery but have had a blood transfusion (4 units). It is now approximately 3 months since the op. The Oncologist has decided that I do not need radiotherapy on my leg as the tumour wasn’t disturbed in the operation. I had a further blood transfusion 2 weeks ago and had 3 units. I had a bone scan a month ago which showed only a few hot spots of arthritis, which we felt was good news. Things are going fine apart from being weary.
31 July 2002