Slow start

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I was diagnosed in September 2022 and had my first treatment a lumpectomy in Feb 2023 any one else had such a slow start? I have asked my team if that's ok but not had much of an answer .had chemo a d radiotherapy which ended last December just having 6 monthly Zometa now.

  • Hi  , just came across your post and was shocked by what I read. I think the simple answer is you should have started treatment way before you did! In fact I would definitely be questioning your hospital on this.

    The NHS guidelines are that you should start treatment no more than 31 days after diagnosis. I believe 62 days in some areas! 
    As we all know the NHS is struggling HOWEVER I cannot understand how you were left for as long as you were! 

    Could I just ask, did your treatment plan change at all from when you saw Surgeon to post surgery? Was Chemo always on the cards or just after surgery?

    Now obviously the main thing in all this is that you have had treatment and I assume doing well? However if I were you I would be contacting the hospital via PALS and just ask why things took so long and if you would of required the same treatment eg Chemo, if they had done the surgery sooner! 

    At your initial diagnosis appointment were you told when your surgery might be? I recall I was told it would be about a month and it was exactly 30days later! 

    I am truly angry on your behalf and can’t help wondering if you were just at a very busy hospital or you somehow fell through a gap and were missed, somehow! Did you need to chase them up at all?

    I think the fact your team aren’t answering your question, speaks volumes!!! Please follow this through! You deserve answers! 

    Hope you are doing well now. Sal xx

  • I really appreciate your reply I just wondered if I was unusual! To be fair I had an MRI after diagnosis then a guided MRI biopsy( very uncomfortable!!) where they founded a second and differt tumour in the same breast.after surgery I actually had less chemo than planned  I was meant to have 4 lots every two weeks followed by 12 weeks of paxiraxcel and I just had the twelve weeks followed be second op to clear margins and nine days of radiotherapy instead of 5. That only finished in December so it does seem a long time. I don't remver being given a time scale for Frist op.but all seems ok so far apart from the non epileptic seizures that started!!! Any one else had those? Fortunately seemed to have stopped since diagnosis which is common.