My dad had prostate cancer about 7 years ago, treated with hormone and radiotherapy and PSA has stayed undetectable.
Despite that, he had a few urinary tract issues and back in late August he required bilateral nephrostomies due to hydronephrosis. A CT scan showed a large pelvic mass and spinal lesions. Originally, the urology consultant said it could be bladder cancer spread to prostate or vice versa and that we should ‘just let nature take its course’. Following this, he had an appointment at hospital, this time with a different urology consultant, who said it was 99% prostate cancer and decided to start hormone therapy, do biopsies, a TURP etc. After feeling quite hopeful over this turnaround, the next day, the palliative care consultant came and signed a DS1500 (life expectancy of less than 6 months) and started talking about hospices etc. She also said he was at risk of spinal cord compression.
Throughout this whole time, my dad has not seen or spoken with an oncologist. The urology consultant sent a letter to the oncologist (with us copied in) telling him of the plan for biopsies etc and asked if he could see my dad, but we’ve heard nothing from oncology and the biopsies were carried out last week.
Yesterday my dad received an appointment letter for a spinal MRI on Jan 1st. NHS guidance is for this to be carried out within a week of spinal lesion detection, but as with everything, it seems like nobody knows what’s going on or who is dealing with what and it’s all taking so long.
He’s had terrible symptoms such as persistent vomiting, severe anaemia, unable to eat due to extreme dry mouth and we spend most of our chasing up the palliative care team, the hospital or the district nurses, just trying to get him some help. I’ve worked in pharmacy for 25 years - many of which were in oncology/haematology (different hospital) and I am appalled by the treatment (lack of) he’s received. I’ve complained to PAL/ numerous times, just to get basic information and semi-decent care.
Has anyone else gone through this - 3 months after being told you have advanced cancer - and not had any contact with an oncologist at all?
Good Morning AM123
I appreciate you are busy now and hope you have received all the help your dad needs. If we as a community can help in any way just ask - we are all with you in this journey.
Good luck with everything and keep us updated when you have the time.
Kind Regards - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Good Morning AM123
Shocking, that's all I can say. Let your anger out on here and once your dad has ben collected and you have time for a brew (or something stronger) and you know he's in good hands I would chronical his treatment (or lack of it) and at that point I would go direct to your MP as his care is still an ongoing case.
I see everything from "the other side" as it's me with the cancer but I see how it affects my wife, children and friends and I really do appreciate what they all do for me - I am sure that even though he might not show it your dad will appreciate what you are going through - keep the faith and well done.
Keep us posted - thanks.
Kind Regards - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
