Not sure about my diagnosis

Hi

At any stage you can ask them for all the reports, they by law have to give them to you. I’ve no idea which hospital your with, wether there overrun with covid or trying catch up. You’ve had the same treatment as I did except mine was in 2016 on the stampede trial. It should keep you in good ish health for a good few years before they review your treatments.

Stay safe

Joe

Thanks Joe I have a appointment with my oncologist on the 18th Jan so will try to get the information then. What is this stampede trail I have never heard of it.

Hi,

Use your appointment to fill in the gaps, and you can ask your GP and consultant to send you copies of all the correspondence - it usually runs a few weeks late, but you get all the reports.

But do be clear on one thing: there is no "all clear" in prostate cancer, especially when there are metastases. What we all hope for is a long remission - which simply means there are no changes to report and no rising PSA. For some people, that remission may actually be a cure - but there's no way to know without autopsy. Remission is the best many of us are likely to get, and we always know that it could change tomorrow, because that's how PCa works.

They check PSA regularly, because it can be a useful  guide to whether a more expensive test is needed ...

PSA is an unreliable and misleading test; "Gradient is far more important than absolute level".

A single PSA result is virtually meaningless (unless it suddenly appears where there's no prostate), though it can be an indicator that further investigation is required. PSA varies tremendously from person to person, and can influenced by many things. That's why if you get a worrying result, the first reaction should be "leave it a week or three, then repeat"

PSA change can often suggest that change is happening (positive or negative). (minimum 2 tests, several weeks apart): a rising PSA after treatment must be taken seriously.

The Rate of PSA change can be very useful in confirming trends. (minimum 3 tests, over months) - a fast rising PSA matters. A fast falling PSA during treatment suggests that it's probably working.

But, as I said, it's an unreliable test, and can mislead, positively or negatively.

Your doctor should have told you what level they would see as requiring intervention or investigation - but if worried, always go back and ask!

Your friend may have misunderstood, or may be using an optimistic form of words. I can't advise on your 'chances' without knowing more about your disease (TNM score, particularly), and we're each unique, so whatever applies to your friend is unlikely to apply to you.

Thanks good advice I will ask what my TNM is as I have no idea

Hi

The stampede trial was offered to me straight away because of my condition, I had PSA 893/Gleason 9/10 and stage four, there were a couple of trials I was offered, after looking them all up I went with that one which at the time had the best overall longevity or you lived longer.

There are many new trials about now, mine was in 2016, so there improving how they tackle incurable PC all the time, you can go on the web and look for trials there are a fair few.

Stay safe

Joe

Without knowing it looks like I was on the stampede trail as that was the treatment that I had. Blood test on the 14th before I see the oncologist on the 18th hopefully my pas is still low, my back is killing me at the moment with it radiating around my pelvis area and my groin but not worth having a doctors phone call for him just to give you some co-codamol got diagnosed with 3 enlarged disks 9 months ago but no treatment due to COVID

Hi

The stampede trial is finished as far as I know, they use the results as standard first line attack, hit it hard hit it fast. I had two blown vertebra l 3 l 5 the doctor there shown me the scan, I had an epidural it worked for about ten months, now I have the co codormol and tramadol as back ups for pain, down to see the specialist in March about my back, see what happens then.

stay safe

joe

Same to you hope they sort out your back. My doctor fobbed me off to some private medical all your gave me was phone calls ,I said these phone calls are not curing my back so they transferred me back to my doctor nothing since

We feel the same way , my oh diagnosed in November,  all scans done , still waiting on biopsy as the first failed , still waiting on oncologist,  he has mets to pelvis spine and rib , they seem so chilled over it all and feel maybe they are not bothered any more , he's on prosap 3 but nowhere other treatment has been discussed,  so worried 

Once my biopsy and bone scan were done everything seemed to move very quickly for me saw the oncologist treatment plan put in place and started the treatment within weeks so hopefully when he gets a biopsy done things will move quickly here's hoping and fingers crossed.