Newly diagnosed CLL/SLL (took a long time to receive diagnosis)

Hi. I presented with symptoms to GP in 2013 and had lots of blood tests but nothing diagnosed. Then the symptoms went away only to return 6 months later. Again lots of blood tests no diagnosis but GP did notice my PSA was raised and after a biopsy of my prostate I was diagnosed with prostate cancer (at age 57). I had cryotherapy for PC which they unfortunately messed up and froze a hole in my bladder. This resulted in my being very ill for 2 years, and in 2018 I slowly started to recover. Fast forward to April 2020 and I was diagnosed with a recurrence of prostate cancer (following a further biopsy) and this time rather than receiving any treatment they were “watching and waiting” under the care of the palliative care team. It was not until November, when a large armpit lump appeared, that was biopsied that I was finally given a CLL/SLL diagnosis. My mum died of non hedging lymphoma and she was diagnosed in 1980s as a result of a routine blood test. I am very surprised it’s taken NHS England 11 years to arrive at my diagnosis despite my suggestions that maybe I had NHL. Have the diagnostic capabilities of NHS really become that much worse in 40 years, or do you think my particular version of the disease was much harder to find? Just asking for informed opinion I appreciate it may be difficult to be definitive without knowing exactly the variety of the disease my mum had, and I have. Don’t know my exact sub-type yet until they do more blood tests.

  • Hi Scuba_chris,

    Welcome to Cancer Chat. I'm sorry to hear of the time this has all taken and I can understand you having questions about this.

    It's of course very difficult to advise on this, particularly as everyone's situation is always a little different. If you haven't already, it might be worth discussing this with your doctor, to try to get any information you feel you'd like.

    Our nurses are also available if you'd like to talk things through with someone. You can reach them on freephone 0808 800 4040 - Monday-Friday, 9-5.

    Aside from this, I hope that this forum can be helpful for you.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator