02 Nov 2023

Trevor’s surprise leukaemia diagnosis following routine surgery

Trevor Lock’s leukaemia was discovered in December 2019, after having surgery for a urinary tract condition. A surprise leukaemia diagnosis during investigations for another medical condition isn’t uncommon, with patients like Trevor often looking back at what they now know to have been blood cancer symptoms. 

“The scans of my abdomen had detected a very large spleen,” said Trevor, who lives in Havant, Hampshire. “The surgeon said he was referring me to the haematology and oncology units at the Queen Alexandra Hospital Portsmouth, for further investigations.  

“Once I started to think this through and the possibility of what it might be, I realised I had been having night sweats and feeling generally very lethargic. I had put this down to my age and flu. After my referral I saw some friends who had not seen me for some time and were shocked by my appearance. They actually said I ‘looked like death’. But I had had no idea I was ill. 

“On New Years Day 2020, I was doing a six-mile country walk with my wife Hazel, who I’ve been married to for 40 years. I struggled to get up some minor hills. I was out of breath and did not feel at all well. An appointment came through to me from the haematology department for mid-February 2020. Hazel pestered the specialist and said I was very ill and this was brought forward to mid-January.” 

Trevor was given blood tests, a CT scan and a bone marrow test, and was initially diagnosed with macrocytic anaemia – a condition where red blood cells become too large and too few. No treatment was prescribed, just regular blood tests which Trevor had throughout the next 18 months. Then, in mid-2021, doctors decided to give Trevor a course of a steroid called Prednisolone for 12 weeks. This was successful in treating the anaemia but, when it was stopped, the issue returned. 

Further tests revealed an additional problem. On 17 June 2021, at the age of 65, Trevor was told he also had large granular lymphocytic leukaemia (T-LGL), a rare type of blood cancer. 

“By that time my spleen had increased from 17cms to 20cms, but its removal was not considered necessary, nor was there any treatment for the leukaemia,” said Trevor. “A course of Rituximab, a chemotherapy drug, was the next course of action for the anaemia, to be administered in November 2021. By this time I was also diagnosed with haemolytic anaemia, a condition to do with the premature breaking down of red blood cells. This didn’t improve things so in April 2022 I was started on cyclosporine, another chemotherapy drug. 

Trevor, who has two children and two grandchildren, is now on ‘watch and wait’ for his form of leukaemia. He said: “I have had repeated chest infections, but no other issues from the leukaemia. It has made me realise that I must take each day as it comes, and make the most of it. I don’t think people die from this type of cancer, but they die as a result of the infections that they could get as a result of a compromised immune system. I do get many infections of my chest, and have now been told I may have chronic obstructive pulmonary disease (COPD). So, my health problems just increase all the time. 

“I have already outlived both my parents, and I hope to be able to see my grandchildren grow up, but sadly don’t think this will happen. I used to like building scale models of ships and planes, but rheumatoid arthritis in my fingers means and I have lost the dexterity to be able to do this. I enjoy walking, although I can only walk on the flat – any hills I find exhausting. 

“Looking back I did have symptoms, and I would urge anyone who doesn’t feel 100% and can’t figure out what may be wrong – don’t ignore it. Get a blood test and find out if all is OK.”

Learn about the signs and symptoms of leukaemia.

Want to read more about others who have been diagnosed with leukaemia? Read Phil’s story about his diagnosis.