Was referred to the haematologist at the start of Feb due to peasize lump in the left side of my neck. (The lump was firm but squishy & painless) Also had lost 10kg (unintentionally) since July 2025 (which is more concerning for me as I have a physical disability and PCOS so losing weight is incredibly difficult usually). I had also been extremely exhausted for several months, needing to take naps as I physically couldn’t keep my eyes open. I had also been experiencing night sweats & neck swelling since the end of Jan. I had an ESR of 39 (it had been 14 two weeks before) but a CRP of 6 and my WBC & Hb was low, I also had a ferritin of 10. The GP had already ruled out glandular fever.

I had a neck to groin CT on the 24/02 that only found “a few small reactive nodes” in the left side of my neck where the peasize lump was located. There was also some around the area under my jaw. Later that same week I had the scan, I noticed the left side lump started to ‘cluster’ with other small lumps and the neck swelling got worse. I also found another lump on the right side of my neck (at the base of my neck/above the collarbone area this time) and the swelling spread down to the collarbone area. The night sweats also started to get more intense around this time and progressed from ‘just getting a bit sweaty at night’ to my pyjamas being noticeably damp.

I saw the Haematologist on the 13/03 to discuss my CT results and my in depth blood results (I had these on 23/02). I already knew what was in the CT as I had gone back to the GP due to being concerned about the progression of the lumps & night sweats and they told me the result - I wanted the GP to contact the Haematologist for advice/try and get my appointment sooner given the changes but they didn’t due to the CT being ‘okay’ and them believing this was caused by a virus. (Even though these changes had occurred after the CT). The Haematologist told me the results of my in depth bloods - my viral screening came back normal. My ESR was still raised at 29. My WBC was 3.8, specifically lymphocytes being 1. But they were mainly looking at my haemoglobin and iron levels so wanted me to have an iron infusion as it was evident my body wasn’t responding to the iron tablets. The Haematologist was also reassured by the CT scan and said there was no point in progressing to a biopsy as the nodes were just too small anyway. I said about the progression since the scan and he examined me and pointed out how my neck swelling was concerning and he could feel lumps on both sides, so said we should be going for biopsy next and he was even considering a PET CT. He eventually decided to opt for a ultrasound core biopsy first and then do a PET CT if needed as he was weighing up the radiation risk as I had obviously just had a CT. He also ordered a repeat of the in depth bloods again.

I had my iron infusion on 19/03. It went okay but I’m still waiting to see if it’ll have any effect. I’m still exhausted and needing naps!

I had the appointment for what I thought was meant to be the ultrasound core biopsy yesterday (23/03). It actually turned out to be a standard ultrasound (the radiologist said he doesn’t perform biopsies only ultrasounds so I’d probably have a separate appointment for it) I had the scan and the radiologist told me he could see the multiple nodes on the left side but said they were small (didn’t specify the exact size). He said that the node on the right side (at the base of the neck/above the collarbone) measured 5mm. Which in his opinion wouldn’t warrant a biopsy because it wasn’t big enough and the structure was okay. He said he could see the swelling/thickening of my neck too. But it would be the doctors decision on what to do next. 

I have seen some of the results of the most recent in depth blood tests: My WBC is even lower at 3.4 (it was 3.8 last time). My lymphocytes are also lower at 0.8 (were at 1 last time). My LDH is 183 (it was 169 last time).

My review with the Haematologist is on 17/04 to discuss the blood results and the biopsy results. 

I’m now finding it extremely hard to sleep at night because I’m getting so sweaty and I can’t lie down because my neck feels so swollen & tight. I’ve also been having raised intracranial pressure symptoms including headaches since 2025 (and no one can work out the cause!) and these headaches are so much worse when my neck is swollen and tight like this, I cannot bear to lie down! I have to be propped up on several pillows and it’s still not working! I’ve also lost another 2kg since Feb…