Drs Graeme Greenfield and Phil Weir explain that "blood cancer can affect young, old and everyone in between with aggressive and indolent disease forms. Perhaps the most striking image of blood cancer that comes immediately to mind is the young child with leukaemia. Thankfully, with the advances of treatment which have been driven in part by the hard work of clinicians and scientists but also in no insignificant way by those individuals consenting to and treated as part of clinical trials, we have seen great improvements in survival in this patient group.
Children with a diagnosis of acute lymphoblastic leukaemia, the most common form of childhood leukaemia, now have survival rates close to 90%. However, this still leaves room for improvement, and the side effects of current treatments remain problematic both at the time of treatment and often into adulthood. The ongoing recruitment of new patients to multinational clinical trials like the UKALL and ALLTOGETHER trials will continue to aim to improve treatment options with patients here in Belfast contributing to this research.
Unfortunately, the outlook for adults diagnosed with acute leukaemia remains well below that which we would all like to see. For those fit enough to tolerate intensive treatment, chemotherapy is often combined with stem cell transplantation with the aimed of curing their disease. These individuals will often face many months in hospital with many challenging and occasionally life-threatening complications and side effects of treatment possible. The psychological impact of disease and treatment cannot be understated."
Dr Cristina Branco connected with Aidan McCormick the chair of the NI Cancer Research Consumer Forum. He is also a Non-Hodgkin’s Lymphoma patient, co-diagnosed with type 2 diabetes in 2011. He generously gave us some of his time to share a testimony and a very thorough account of his journey since diagnosis, and I invite you to read through this insightful contribution, which is not only informative, but also a hopeful and reassuring account for fellow patients, as well as an enlightening and humbling read for the PIs at the PGJCCR, working hard to rise to the expectations of Blood Cancer patients.
I am a Service User, a Cancer Patient. I was diagnosed with Non-Hodgkin’s Lymphoma in 2011. It followed an earlier diagnosis of Type Two Diabetes when my GP also examined a red rash/lesion on my side. Originally it was suggested that my condition was a case of Jessner’s Lymphocytic infiltrate of the skin but much later confirmed that the lesions were Non-Hodgkin’s Lymphoma (NHL). Jessner’s is a skin condition that may be characterised by a non-cancerous (benign) build-up of white blood cells. This also presents as lesions or lumps on the skin and this was true for me so probably quite difficult to initially diagnosis NHL.
There is a lesson to be learned for patients here. Individuals know their own bodies best. If a person feels there is something not right, however insignificant to them, they should report it to their GP or GP Practice Nurse. In my case I took advice from my local Pharmacist who directed me to my GP.
In all honesty I knew little about NHL other than it existed as a condition and it was blood related. I’m not sure if I had considered it a blood cancer, probably not. My immediate family had no experience of the condition. My illness was identified as a result of a punch biopsy and later a more substantial biopsy taken in the Royal Victoria Hospital (RVH) Dermatology Department following my GP referral. The samples were sent to a Histopathology professional in the Belfast Trust Laboratories. The diagnosis was empathetically described to me by a consultant Dermatologist in preparation for my first visit to the Belfast City Hospital (BCH) Haematology Department, the next stage. One excellent piece of advice given to me by that Consultant was not to search the Internet looking for my diagnosis and possible outcomes.
In fairness RVH Dermatology referred me, very quickly, to the Haematology Department within the BCH Bridgewater Suite. It is of course challenging walking into any hospital setting never mind to have a cancer diagnosis confirmed. It was worrying. It is a step into the unknown. I was fortunate in having my wife with me for support and eleven years later she is still there attending my appointments, offering support and understanding and providing care. The same goes for my children and close family. That’s an important point. The Haematologist formally gave me the results of my biopsies. I had a bone marrow sample and a bone sample taken from my pelvis the following day. I also had a CT (Computed Tomography) Scan, which uses X-Rays, to determine the progression of my complaint and more bloods taken. Unfortunately I had a reaction to the contrast medium given intravenously prior to the scan which brought a little concern, on my part, to the proceedings. In those early days my particular cell histopathology identified two different NHL cell types, one in 2011 and another in 2012. I have had numerous biopsies taken over the years identifying further NHL lesions. My treatment to date has consisted of surgical excision and/or radiotherapy. In addition, I am a Type Two Diabetic now using insulin as part of my treatment. After learning the extent of my condition, that there was no cure available but it could be managed over time, I was fortunate that my doctors were happy to explain the aspects of my conditions and discuss my scan and biopsy results in detail. Pre-COVID, specific booklets and leaflets from Macmillan Cancer Support and Leukaemia & Lymphoma NI were available in waiting areas and these were helpful. During this time I continued to work.
In my case I didn’t feel information was lacking or held back. Initially I probably didn’t know what questions to ask and that needs to be appreciated. That changed over time. My Haematology Consultant was very clear in her delivery and her staff, including Northern Ireland’s first lymphoma clinical nurse specialist, increased the amount of information they offered as the years progressed and I began to understand the nature and development of my disease. It was a similar case when I attended additional Departments such as Oncology, Dermatology, Diagnostic radiography, Therapeutic radiography and the Clinical Genetics Service where I encountered sensitive and well informed professionals including from my friendly Phlebotomist.
Before diagnosis I was aware of the function of the PGJCCR but not of the individual areas and aspects of cancer research. Joining the NI Cancer Research Consumer Forum and the Queens University PPI-Hub and Network as a PPI Representative has afforded me the opportunity to visit the Centre, pre-COVID, and join guided tours of the various departments and meet researchers who, kindly and enthusiastically, described their fascinating work. Ultimately the results of this work can be life changing for many patients. I’m always conscious of the critical medical and technical work of the Hospital and Research Diagnostic laboratories.
I would like to understand better the future of Hematology research and in particular of NHL research in Northern Ireland and its funding in challenging times. I would be very interested in learning of the impact genetics research, particularly in Belfast, is making in understanding the condition and of course the development and refinement in diagnosis and treatment options offered to patients on a similar journey to mine. Are there any current clinical trials focused on NHL? Clinical trials introduces the amazing work of the NI Clinical Trials Network and the NI Experimental Cancer Medicine Centre.
I believe the PGJCRC is a centre of cancer research excellence. I can understand that many research projects can be daunting to some individuals particularly without that level of training. However, there is no reason not to offer a description of research projects and research success, in plain English, available for students, patients, their carers, our schools and colleges of further education educating the next generation of researchers and members of the general public. Celebrating the work of the Centre regionally, nationally and internationally is important.
If I was involved in a research project or clinical trial I would want to know who the members of the research team were, the aims of the research, how it would be carried out, and what would be done with the results. In addition, the possible impact the research programme might have on a particular disease and its benefits to patients.
Also, I would like to know how I was identified as a possible candidate and what my participation would involve including any risks and benefits. Finally, how would the research findings be disseminated, to me and also more widely to a bigger audience.