I've had a hard lump on my skull for a few years and I noticed it was getting bigger. My GP referred my for an ultrasound in Aug 2022, the results came back as inconclusive. I then had a CT Scan in Nov 22. The results didn't come back until Jan 23, I had multiple lytic lesions in my skull and there it all started......
I was referred to bone sarcoma, on the two week pathway on 10/01/23. This referral was bounced back to my GP a week later with a note saying I had been referred to the wrong department. My GP re-referred me to ENT on 17/01/23.
I saw the ENT consultant at the end of January. I sat in her office and was told I had been referred to the wrong clinic!! I was referred on to the breast clinic, for full bloods and haematology. The breast clinic were amazing and I was seen and cleared of breast cancer in a week. I had to wait a few days to get a blood taking appointment and was then seen in Haematology on 14/02/23.
The consultant was great and referred me for full body xrays an head, neck and thorax CT Scan. The blood test were clear and the scan should a further lytic lesion on my spine. At the end of March I was referred back to ENT with a note on my file that the lytic lesions in my skull should be biopsy as was originally indicated in January. So 2.5 months to get back to square one.
I had to chase for an appointment, bearing in mind that this is still part of the two week parhway. I finally saw the original ENT consultant that I had seen in January on 27/04/23. I signed consent forms for a biopsy and thought it wouldn't be long before I found out what had caused the lytic lesions. How wrong is was......... two biopsies were cancelled on me (I was gowned up and ready to go into theatre both times!!), before I finally had my biopsy on 19/06/23.
I had a follow up at 2 weeks and was told my biopsy site was healing OK,but they couldn't tell me when I would get my results.
I end up in A&E the following week. The biopsy site had become infected. It needed to be drained of pus and I was put on week of a double dose if antibiotics.
8 weeks later and I still haven't had my results, even though the results had been with the ENT department for the last 5 weeks.
I have a telephone consultation on 15/08 for the results.
So my two week pathway has so far taken 7 months.
I understood that you should be diagnosed in 28 days and start treatment in 62 days. Whilst I appreciate that it is not always possible to get a diagnosis in that time frame - I can't believe how long the whole process has taken.
PALS have been great, they have been so helpful but can only do so much.
Has anyone else have their two pathway take this long and longer??
Thanks for taking the time to read my rather long and rambling post.
