Having just been through a year with advanced stage three SLL, Small Lymphocytic Lymphoma, I thought that I would record my experience and by doing so perhaps help others who may be suffering from this rather unusual extranodal tumour.
I was diagnosed with advanced stage 3(ES) SLL in February 2015. For those who do not know the (E) stands for extranodal. I had a tumour in the orbit of my left eye. (S) Stands for spleen meaning that the SLL has entered my spleen. However, my blood count has been consistently within limits with the exception of my platelets which have consistently been around 40 x 10^9/l. The normal range is between 140 x 10^9/l and 400 x 10^9/l and my lymphocyte count which has been consistently at 1.4 x 10^9/l. The normal range is between 1.5 x 10^9/l and 4.0 x 10^9/l
The whole episode started when my optician picked up an abnormality during a routine eye test. I was referred to the eye clinic at Aberdeen ARI. After examination, bloods and a CT scan of the orbit, I was seen by an ophthalmic eye surgeon and operated on to remove part of the tumour for biopsy. All this was done within three weeks from my visit to the optician.
Then everything ground to a halt!
Stiches out ten days later, but no biopsy results yet. Another two weeks past and I phoned my GP who was furious that I had received no results, but with difficulty she was able to find the results which said that I had been diagnosed with SLL/CLL. Also a note that I had been referred to the ARI Haematology department.
Several weeks later I was given an appointment and saw a registrar at the haematology department who’s English was not very good. She gave me no information and did not answer any of my questions. I assumed that this was as a result of her bad communication skills. Several weeks later I received another appointment, but the day before the appointment I was telephoned by a haematology consultant who asked permission to conduct the appointment on the phone to save me travelling the 160 mile round trip to Aberdeen. The essence of this was that she had referred me to my local hospital for a full body CT scan and to the Clinical Oncology department to have the tumour in the eye dealt with by radiotherapy.
Once again time passed, in fact four months from my visit to the optician, before I was seen by the oncologist. However during this period I had one day in which I bled profusely from my bladder. I could actually feel my bladder filling up several times every hour ending by urinating out the blood. This stopped 15 hours later just as suddenly as it had started, but left me very weak. I had put it down to my very low platelet count, but my GP said the she did not think it was that and referred me to an urologist for further examination.
Shortly after this episode and before I saw any urologist I was in radiology pre-treatment, head mask made, scans completed and the 12 day, twenty-four Gray treatment was started. Again this may help others about to start on radiotherapy, but I must stress that all treatments and people are different and will depend on the tumour and on the person being treated. In my case it consisted of 12 consecutive days of travelling 160 mile round trip, weekends off, to be given 2 Gray’s on each treatment. The treatment only lasts about ten minutes and the only discomfort is being clicked into place on the bench with the head mask. I had discovered a patient’s hand-out given to patients having radiotherapy written by the Beatson Cancer Unit in Glasgow in which it stated that a patient receiving orbital radiography would be reviewed every week during treatment and that a specialist member of the (MDT) multi discipline team would be appointed to assist should the need arise. Well I am sorry to say that none of that happened at the Aberdeen ARI. On the last day of radiotherapy I told the radiology girls that I was starting to have a few side effects and they took me to see a review nurse who gave me some strong pain killers and mouthwash, then I was sent home with a follow up appointment in two months’ time.
Exactly ten days after completing the radiotherapy I started to suffer severe pain in the orbit of my eye and wondered what to do. Who should I contact? Should I call my GP or go to A&E. It was then that I again realised that I had never been given any specialist contact to call in an emergency. This I would state is contrary to all the government propaganda they put out about patient led NHS cancer treatment regimes. I later discovered that it is again a post code lottery as to where you live and in which cancer centre you are treated. I tried to telephone the radiography department at the ARI, but the hospital exchange would not put me through for some reason which they would not elaborate upon. By luck my wife found the telephone number of an oncology clinic that I had attended months before and rang them. They put me straight through to the same review nurse that I talked with on the last day of treatment. She told me that what I was experiencing was to be expected and that I was at the peak of reaction time. No one had told me to expect this. She proscribed stronger pain killers to be collected from my village pharmacist. This worked well and the pain went fully away after a further two days.
I was then requested to have a “Urogram X-Ray” with contrast and an “Ultrasound” of my bladder and later informed by telephone that I required a “Cystoscopy”. This is a camera inserted into the urethra and up into the bladder. Because I have an ongoing campaign about invasive testing, without being offered sedation and as such probably been marked down as a pain in the backside, I was given the opportunity to have this done under a general anaesthetic. What was indeed most surprising and which amazed most of the clinicians that I spoke with was that both the urology and haematology departments agreed to work together and as I was to have a general anaesthetic that haematology would carry out a bone marrow aspiration and biopsy at the same time as the cystoscopy. Wonders will never cease!!
Prior to these tests in October, I saw the ophthalmic surgeon would announced that my eye was back to normal and that he was very pleased with the results of my radiotherapy, as was my clinical oncologist who also cleared me and referred me fully back to haematology.
Initially the haematology department had said that because of the additional symptoms of the SLL, they would want to start me on “FCR” chemo cycles in November. However, following the very successful radiotherapy treatment, it has been decided that because I am felling so well and my symptoms have almost disappeared, I will go onto “watch and wait” with four monthly consultations.
It was also agreed between the urologists and the haematologists that the excessive bleeding episode was most likely attributable to my very low platelet level and my body requiring to get rid of, what it perceived to be waste. The haematologist said that in simple terms my immune system was and still is confused!!
So how do I stand now almost one year after first being diagnosed?
Well I still have SLL and will always have it and am now on “Watch and Wait”.
Both my spleen and liver are affected by the SLL and there are indications of enlarged lymph nodes within the abdominal area.
As a result of my platelets being consistently low I have been diagnosed with chronic ITP “Immune Thrombocytopenia”.
Again as a result of the cancer, my teeth have degenerated over the year to there being almost none left above the gum line. Every day sees more breaking. Because of my low platelet count I have been referred to the Oral and Maxillofacial Surgeons for intensive treatment within the hospital.
The only significant SLL symptom that I still have is nightly leg, bone and muscle pain which I can control with nothing stronger than standard paracetamol tablets.
So there we are!!
As a result of this past year and the worry that it has placed on my dear wife and my fear of the unknown we have decided to have a holiday in Malta in December to celebrate our thirtieth wedding anniversary and the good news that I appear to be in remission.
So It’s now “Watch and Wait” for the next tumour to show itself.
