Hello, I have been lurking on here for the past year since my positive diagnosis and have finally decided to post. Briefly, my GP had been monitoring my PSA since 2012 when an ultrasound following a UTI showed I had an enlarged prostate. My level has fluctuated between 3.6 and 4.8 and had dropped to 4 at the last test in 2016 (I am now on the verges of becoming a pensioner at 65). The 2017 test showed a rise to 6 and my GP referred me. This unwelcome news arrived on the same day that our then 19 year old daughter was diagnosed with Hodgkin's Lymphoma and faced 4 months of unpleasant chemo (to which she has fortunately responded and is now free of the disease.)
Anyway, off to our local urology unit for a DRE which showed nothing abnormal, then an MRI followed by a trip back to the urology unit for a TRUS biopsy. The somewhat avuncular urologist who performed this reassured me by saying that the MRI was clear and that if there was anything in the prostate it would be small and contained. The 2nd January 2018 found OH and me in front of a locum urology consultant being told that the biopsy was positive but don't worry too much as only 2 of 12 samples were affected with a Gleason of 6. In view of this and my daughter's situation, AS was recommended and I was happy with this. Obviously the MDT agreed with this decision because I didn't get an appointment to see anyone until the 24th April which reassured me further as I figured that if there was a gap of 4 moths from diagnosis to consultation then nobody was too concerned.
April 24th arrived and I saw a specialist nurse who went through treatment options should treatment be deemed necessary. RT was a no no due to a urethral stricture which has been treated twice and which now requires weekly self catheterization (it is not as bad as it sounds, believe me!) But he was happy to continue with AS apart from the anomaly on my MRI. Er, hang on, what anomaly? I was told by the doctor who did the biopsy that my MRI was clear. "No, there is an anomaly," came the reply. So it was agreed that I would have another MRI, a PSA test immediately, and another consultation in June with an instruction to have another PSA test the week prior to this.
I received a phone call a week later to tell me that my latest PSA result was 9 but not to worry as it can fluctuate. So I had the MRI, and had another PSA a week before the next appointment. At the June consultation, it was revealed that the anomaly on the MRI had not changed since the original scan 8 months earlier and my PSA had dropped to 6.5. So continue with AS, a further PSA test in October and a template biopsy in December.
I received an appointment on the 7th January to discuss the biopsy results and apart from the usual pre-appointment jitters, I went along reasonably confident that AS would be continued. Then the bombshell! 9 out of 34 samples are positive with a Gleason of 10! I now have an appointment with a urology consultant on the 15th, a CT scan tomorrow, a bone scan on the 17th, and am waiting for an appointment with an oncologist. I am booked in for RP on the 15th February assuming that the scans show that everything is still contained. The nurse did give me a bit of reassurance by saying that if the cancer had broken out of the prostate then we would be looking at HT and a time of years rather than months!
I am still trying to make sense of all this. I spoke to a very supportive PCUK nurse when I got home who said that a move from low grade and volume cancer to the current level was very unusual and thought that the original biopsy could have missed some of the cancerous cells and that I could have had a Gleason score of 10 all along.
So here I am, wondering what the future holds, but still reeling from the news. I am doing the pelvic floor exercises in the hope that I will actually need them rather than going on to HT and presumably chemo.
Thanks for reading this and best wishes to you all.