Hi Everyone,
Especially all of you who supported me through my crisis.
Firstly my apollagies for the delay, in keeping you all updated and informed. As you will have seen from my previous posts I was in a complete tizz, mentally and emotionally at breaking point. At this point I stopped communicating as I was head down a rabbit hole, contemplating a final solution. I was as bad as it gets mentally and emotionally.
So Firstly I need to update on some numbers - I actually had 29 core samples taken - not the initial 12 I thought I had. One core 3+3 , the other core 3+4 , the +4 was 5% of the core. Yes the staging was incorrect as well at 1 - the correct staging was stage 2. Intermediate Favourable. Gleason Score of 4.
The Surgeon, Oncologist and Clinical Nurse all recommended Surgery, and in all honesty I can say that I was been fear managed into there recommendations. Their was no support for my decision to do Active Surveillance , while they all agreed that it was a option.
To cut a long story short, of extreme fear, dark thoughts etc. I than saw a Professor - Using the exact same imaging and information as my first medical team - my Gleason score was downgraded to a 3. (Bear in mind this was approx. 6 weeks after the diagnosis). The Professor confirmed that my choice of active surveillance was correct - and the one to follow, and that we would have 3 PSA tests over the next 12 months with a MRI and contrast in October 2025. In September I went to get my results - I was bricking it - I felt like a convict about to get his death sentence.
Low and behold the Professor tells me that I do not have cancer. I sit there in disbelief. He informs me that it was inflamation. That their is no evidence of disease - My Gleason score is downgraded to 2. Tells me see you in 18 months for a PSA and another MRI.
I sit their gob smacked I cant believe my ears. Needless to say I am ecstatic. Yet filled with anger that my first team were prepared to do surgery - when this was not needed. (Please note I'm not angry that the diagnosis was wrong ,I understand that this can be difficult to interperet.) .
My issue was that no where did they discuss that I had a large prostate - 105 cc- nowhere did they discuss that a larger prostate will make more PSA. , No where did they mention my PSA density - which by the way was very low.
Neither did they mention that the larger the prostate the bigger the chance (40%) of false positives.
This post is not to provide false hope - this post is about do your homework - ask questions about everything, get another opinion. Make sure you are fully informed .