Originally Posted by: Online Community MemberHi Itsback,
Having read your post, not surprisingly I am also of the view that you have not received what I would consider to a reasonable standard of clinical practice. Suffice to say my knowledge of your NHS system is wanting, but where you in Australia in the same predicament, you would have been afforded the answers you are seeking, well before now.
The issue of grounds for litigation is frivolous. Finding expert medical opinion to argue your case is a nonsense and frankly not worthy of your time nor consideration.
Your consultant's opinion maybe a reflection on where they see you in terms of the impact of your comorbidity on prognosis. You do have every right to ask that question of them. Your original markers were high and so with it, BCR was distinct, but your treating Physician should have gone through that scenario with you at the time of your primary treatment.
Thus you should evaluate your need to know. For some they would rather smell the roses and let nature take it's course. For others knowledge is their empowerment to direct treatment structure. If you are of the latter view, then a CT with contrast of the pelvic, abdo and thoracic cavities would be a good starting point essentially looking for bulky mets. PSMA is more definitive for smaller mets.
I texted the Oncology Nurses on Tuesday, setting out my position as above. One phoned me yesterday, Wednesday. (I often miss calls when out cycling but luckily was having a breather sat by the River!)
I gained a little more insight into the Consultant's thinking (the nurse was at our meeting).
She agreed that she could ask the Consultant about 1. my starting hormone treatment now and/or 2. my having CT and bone scans ( which is what would have been on offer, rather than PSMA PET, a year or so ago). Had my PSA been in the 20s upwards then Consultant would probably have gone with 2. in order to save time because spread etc large enough to "find" with the lesser technology. At 2.9, need the most accurate and sensitive investigation possible in order to determine most appropriate treatment options. The source COULD still be within the prostate.
I think that makes sense!
The PSMA waiting time is national - few NHS centres have the capability and the few private sector facilities face the same problems in obtaining the raw, radioactive, materials.
The Consultant worked on a wait time of 8-10 weeks in setting our next meeting. Given the increasing pressures on NHS, especially PC as a result of heightened awareness, I personally doubt even 10 weeks, but that is outwith my hospital's control.
The Nurse did not consider that the delay would shorten my life expectancy! (Nor do I - more likely to be under the wheels of a road raging SUV when I cycle on roads!)
She also briefly touched on potential treatment options. Some I will not countenance and she agreed that most likely outcome is hormone treatment (which might buy me a couple of years of an acceptable quality of life - enough for me).
She was good enough to answer my "what would you do?" (accepting her caveat that she doesn't have a prostate!). She said "wait for PSMA". Good enough for me, she's been in her specialist role for at least 4 years and such folk tend to be more forthright than Doctors.
I doubt I'll secure a cancellation, still having a life I can't always answer my mobile so might well miss out even if I get the call!
An aside, but I do find that looking fit, healthy, definitely not obese and obviously exercising a lot is a drawback - "not much wrong with you for your age!" Even my brain still works!
Got a lot of social and other stuff, including my g.f.'s health, on at moment so put the PC disappointment to the back of my mind. Have a short holiday within a few hours of getting to hospital IF a cancellation!
Onward to inevitable departure!
World affairs may of course get us all first.....
Dave.
PS litigation? No. It's a system thing, not any individuals.