Newly diagnosed with incurable PC

Polly,

Very sorry to hear about your partners diagnosis at such a young age.

I can understand your concern about tests not being done. I would have thought that thorough testing was essential to properly diagnose people.

My older brother has just been told he has PCa based on a PSA level of 89 and a DRE.  No MRI scan and before he even had a biopsy. The urologist just said based on my experience you have cancer. 

I was a collisions investigation expert and if I had looked at an injured pedestrian and said " based on my experience you've been hit by a vehicle" I'd be hounded out of the profession; could have been a car, a truck, fallen from a tree, assaulted etc.

It just seems to be very hit and miss with consultants and MDTs making decisions with very little explanation or oversight. 

I truly hope that you and your partner have a happy future together and the way you are facing this horrendous diagnosis shows you are setting about things the right way.

Take care, Mick 

Diagnostic tests should only be done if they're clinically significant, which means the results will guide some subsequent actions. A biopsy is part of the diagnostic process, confirming cancer found in the prostate, and giving a Gleason score (a measure of aggressiveness and hence how likely/quickly it is to spread). If the PSA is high and spread can be seen on scans, then the biopsy isn't going to tell you much you don't already know. It is also sometimes used for genetic testing, but that tends to impact treatments further down the line, so might not be relevant yet - they will do a biopsy if/when they want to know this if you haven't already had one.

Sorry for what you're going through. It's oncology who will decide on things like chemo and Abiraterone (or other equivalent drug). I wouldn't necessarily take much notice of what a urology nurse says about this.

By the way, if he finds the Degarelix injections are an issue, there is a daily tablet equivalent, Relugolix/Orgovyx (different drug, but works the same way).

Sorry for what the two of you are going through. You should get some good support here.

Hi.

I think, somewhere, but I cant find it, that your fella had a CT scan which showed nodules on his lungs. You were a bit concerned about these.

It rang bells with me. I dug out a copy of my CT scan it mentioned 'a 6mm nodule in the upper lobe of my right lung and numerous tiny nodules in both lung fields which were indeterminate' ???

It mentioned that my oesophagus appeared collapsed???

It mentioned that some of the bowel loops appeared collapsed. There also appear to be some changes of divertcular disease. Possibility of focal lesions/abnormalities cannot be exluded in the unprepared colon. Clinical correlation is advised???

It mentioned scattered lytic looking areas in pelvic bones and the femoral. These are indeterminate???

My CT scan read as bad as the last MOT on my clapped out car. 😁 

Soon after I had a bone scan which showed mid cervical spine activity consistent with degenerative change??? But fortunately concluded no scintigraphic features of skeletal metastatic disease.

Three years later, I've heard nothing about the lung nodules or the colon lesions. I'm hoping they are not cancerous.

I've still not been told what the holes or lytic areas in my bones were.

I've googled lung nodules they are common and usually benign. I've not researched the colon problem, but recently had a bowel cancer 'through the post' test, which came back negative.

I'm putting the bone problems, which sometimes ache like hell, as some sort of arthritis.

As for my collapsed oesophagus, I'm still eating and drinking okay.

I'm struggling enough with confirmed PCa, to push for follow ups on other likely disorders. 😁

The only reason I've posted this is to warn others that CT scans, aren't limited to prostate problems. They can reveal a myriad of other possible health issues.

Edited by member 25 Jul 2025 at 09:00  | Reason: Typo and additional text