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My Journey

John-Paul
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Hi. I was diagnosed in early 2013 with stage 3 prostate cancer, with a gleason score of 9. I had NO symptoms and was extremely lucky to find out after attending a well man clinic at my doctors, mainly due to me having a non secretive psa score of only 9.  I underwent radio therapy along with a course of hormone therapy. At the start of my treatment I signed up for the sage program, lucky I did, as two years later my psa had started to rise yet again. I was given a pet ct scan and a ct scan, the latter discovered a tumour in a lymph node close to my spine. I was was given chemo and was told I'd be on hormone treatment for the rest of my life. I've been ticking along nicely for the past 6 years or so with zero testosterone and 0.3 psa readings, until two months ago when it started to rise. I was rushed in for emergency pet and ct scans, the latter resulted in highlighting a further two enlarged lymph nodes close to my aorta and spine. Specialist nurse telephoned to say, they are going to wait three months, then re scan to see where we are at, needless to say, I'm extremely concerned what's happening inside my body, but they know best. My journey continues. 

I'm only 65 btw. I have 3 sons, all of which are waiting till they're at an age when they can be tested. A good reason why I strongly believe there should be a national screening program. 

X 

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    Hi John-Paul and a warm welcome from me, As Steph has said it's so nice to hear how well your treatment has worked, though can understand your concerns with recent developments. We have  few similarities so thought i would say Hi, Gleason 9.88, non secreting PCa, max PSA 8, been through HT and RT which is/has worked well, and have mets in nodes, iliac and peri rectal, even have 3 kids 2 girls and a boy, but only 58yo. I would love to see a national screening test for PCa but sadly the PSA test is too unreliable, though there is a new test, just started trials, which is 94% accurate which can not only tell if you have it, but importantly, if you have not. PS, my HT is losing effectiveness and PSA rising, suggested next treatment SBRT, best wishes. Eddie

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    Hi John-Paul and a warm welcome from me, As Steph has said it's so nice to hear how well your treatment has worked, though can understand your concerns with recent developments. We have  few similarities so thought i would say Hi, Gleason 9.88, non secreting PCa, max PSA 8, been through HT and RT which is/has worked well, and have mets in nodes, iliac and peri rectal, even have 3 kids 2 girls and a boy, but only 58yo. I would love to see a national screening test for PCa but sadly the PSA test is too unreliable, though there is a new test, just started trials, which is 94% accurate which can not only tell if you have it, but importantly, if you have not. PS, my HT is losing effectiveness and PSA rising, suggested next treatment SBRT, best wishes. Eddie

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