Conflicting information re diagnosis

I went to A&E in June for a severe pain in bottom of back both dides, which had only come on that day, and whilst at the hospital did go, and has never returned.

I had a CT scan, blood and urine test at A&E and the Dr i saw before i left had my symptoms totally wrong and i did have to ask if he had the right person as he told me that i had had right loin pain for 3 weeks.....this was never said by me once. (1st issue,,)

He then went to explain about low T cell count and enlarged periaortsl lymph nodes and referred me to haematology as he thought it was an infection

Haematology consultant rang me a week later and again had incorrect information, then arranged an MRI scan to be done

Went for MRI which was actually another CT scan!, this time with contrast

2 appointments were sent to my NHS app that were not for me for pre operation appointments

Refer to Urologist who told me i had stage 4 metastatic prostrate cancer with possibly 3 to 5 years to live and immediately put on bicalutamide (no other tests done to see whether i had any problems that this could cause bigger problems with. PSA level 3595

Sent for prostate biopsy

Refer to Oncology

1 more appointment on app for someone else again for pre operation check

Haematology discharged me, i then receive an appointment to see haematology! Went to see Oncologist who answered some questions, told me i needed the triplet (chemo, ADT and hormone inhibitor) i said i needed time to think sbout it

Oncology confirmed i did need to go to Haematology appt as it was an error

Day of haematology appt that id been told was another error, consultant phoned to see where i was and couldnt understand why an appointment had been made as it was urology and oncology dealing with it

Letters on app and through post contradict what oncologist has said

Letter fron oncologist has errors in it

Everytime i received something it is different to ehat has been said

I have seen no results, no scans (despite asking)

I have no symptoms what so ever, feel sbsolutely fine (apart from hot flushes that prostrap is causing) 

Nothing makes sense and now they are wanting me to go on apalutamide as well as the prostrap which realistically could make me seriously ill....so cause problems when at the moment i have no problems at all

I have been messed about by hospital and GP so much since June that i do not trust anything now and oncologist is not a very nice or helpful man

I need help as i am at the stage where i just want to tell them all to leave me alone as this is seriously affecting myself and my partner, this has been the worst 2 months of my life and no one even cares that i have been muddled up with someone else 5 times now, no explanations, no evidence of anything. Hoe can i even be sure that i have prostate cancer?

I dont know whether there is anything you can do, but i need help

Kind regards

Andy

  • Hi Andy, and thank you for your post.

    I’m sorry to read about your recent experience with the NHS and can appreciate how stressful it has been.

    I can understand how you now feel you have lost confidence in your oncologist and GP.

     If you have not yet done so, it may be helpful to contact the hospital's Patient Advice and Liaison Service (PALS). They should be able to look into each of your concerns. 

    You can also request a second opinion. You could ask your GP or current specialist to refer you. We have some general information on our website about getting a second opinion.

    You may also find it beneficial to visit the NHS Feedback and Complaints website, as it could provide useful guidance on how to proceed.

    I hope you can get some answers soon.

    Please get back to us if you need any more information or support. You may find it helpful to talk things through with one of the nurses on our helpline. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5 pm Monday to Friday.

    Kind regards

    Tina