Lymphoma Transfornation

My mum had been experiencing some discomfort around the bottom of her ribs for a few weeks and the first GP she spoke to on the phone at her practice ordered basic blood tests (at mums request) and said he would do it if she felt it would make her feel better?!!  These came back normal apparently, but she continued to feel unwell and got to actually see another GP at the same practice and she examined mum and ordered full bloods.  2 days later mum had a call from the GP telling her to go straight to hospital and they were expecting her... She spent a week in hospital in December and had various scans and tests and was released to home on Xmas Eve 2020 with the diagnosis that she had low grade lymphoma which they believed originated in her spleen because it was 5 times the normal size.  She had a bone marrow biopsy in January 2021 and it came back clear. The surgical team were then planning on removing her spleen sometime in February and she remained at home awaiting a date for surgery because they felt she was safer away from the hospital environment and Covid risk.

Her condition worsened and on 8th February 2021 she was readmitted to hospital with breathing problems and she had 2 litres of fluid drained from her lungs.  She developed problem after problem with her bloods and her heart rate was all over the place.  The surgical team then told her she only had a 50/50 chance of surviving surgery and left her to consider what she wanted to do. Within 24hrs we had a call to say surgery was no longer an option because she had gone downhill and they were transferring her to another hospital into the care of the haematology team.  My mum transferred hospitals midday on 24th February and passed away at 5pm on 25th February.

We were told by the coroner that the lymphoma had transformed from low grade to high grade at speed and it's very rare for this to happen.

It was only 9 weeks from diagnosis to my mum passing away and up until she went into hospital she had been generally fit and well.  She was 69 and would have celebrated her 70th birthday in July this year.

Has anyone come across this please, we are all struggling to deal with the impact of such a sudden loss.  Mum went through so much in such a short space of time and we weren't allowed to visit her in hospital because of Covid.  The only time we were permitted to see her was for a couple of hours in ITU on the day she passed away.

Thank you.

 

  • Hi Sal1972,

    Welcome to the forum and firstly I wanted to say I'm so sorry to hear of what you have been through. I can only imagine how incredibly difficult this must have been, and continues to be. It sounds like it's all happened very quickly and likely with a lot of emotion and potentially confusion along the way. I hope you're getting on as OK as you can be although I'm sure there must be a lot of thoughts and emotions to process.

    If you feel you'd like to talk things through with one of our nurses at all, you can reach them on 0808 800 4040 (Monday-Friday, 9-5).

    We're always here for support on the forum and hopefully you'll receive further to your post soon.

    Take care and wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Hi Sal

    My mum passed away on Friday (3 May), we were given the Diffuse Large B Cell Lymphoma diagnosis on 18 April. An otherwise extremely fit and healthy 75 year old, was poorly from mid February, which 3 GPS and A&E turned her away saying it was viral. Her liver failed.

    We are struggling to come to terms with how quick it has happened.

    I read your post and wondered how you have dealt with loss and I’m struggling to understand how diagnosis was missed so many times.

  • Hi RS75,

    I'm very sorry to hear of the loss of your mum, and I wanted to send our condolences - this sounds like a lot to process.

    As I saw your post, I just wanted to send a quick note to say that it doesn't look like Sal1972 has been active on the forum for a few years now. It's possible that you'll still get a reply, but if not you may wish to create your own discussion on here to hopefully get some replies from others.

    We are always here for support if you need it, and I hope that the forum can be helpful for you.

    Best wishes,

    Ben
    Cancer Chat Moderator