LONG wait from referral to treatment. Is this normal.

  • 2 replies
  • 27 subscribers
  • 189 views

I had breast cancer October 2021. Lump removed, radiotherapy but no chemo. I discovered a lump in my neck, went to my GP who did urgent referral to ENT on Feb 1st. Since then I have had to chase EVERY appointment and finally had a biopsy and CT scan which showed secondary cancers in my lymph nodes, Spine and both lungs. Finally got to see an oncologist  last Thursday (18th April). Treatment plan is Ribociclib/letrozole but need tests prior to starting the treatment. I have now found out there is a 5 week wait to even get an  appointment date, at Chemo unit for these tests, lets alone starting treatment. That will be very nearly 4 months from referral. Has anyone else had these long delays? I am finding it VERY stressful and in my mind picture all the cancer cells reproducing at a rate of knots before any treatment started! Anything I can do to speed things up? I thought there was a 62 day from referral to satrt of treatment set out by the NHS?

  • This is awful get in touch with your local MP this should be priority treatment for cancer sufferers. No time to wait as cancer does not understand this.

  • I’m not sure about the nice guidance but I was having biopsies, mri, ct and pet scans from October 22 to January 2023 till secondary diagnosis in February 2023 and then began letrozole and ribociclib from march 2023. It’s a total rollercoaster and I think that’s how it is.

    Make a complaint to the oncology department and see if it helps you. It’s so stressful waiting though