My prostate cancer journey

Hi and thanks for the post. I hope your next PSA is as good as the last one.

Thanks l will continue my post hopefully it will add to the Community Knowledge

I have just looked at your journal and PSA levels you are doing really well. PSA levels less than 0.8 after your treatment is what several consultants have told me . In fact The Christie Assay doesn't go below 1.op ?

Hi topcat, just read your post, it will be very interesting to follow your journey, especially with the knowledge you have, your PSA is Very good, long may it continue.

All the best Ulls

Hi Ulls nice to talk. I will continue if l may. My first impressions of treatment were very good and l tolerated radiation well. Hormone treatment eg Lupron which is now considered obsolete by the manufacturer reduced my PSA almost instantly to 0.03 ish l wasn't offered SpaceOar which is gel they inject to increase the space between prostate bowel and bladder ? On completion of radiation the consultant at Weston Park Sheffield told me the aim was to achieve a PSA of 0.8 or less but that was meaningless to me at this early stage. My lowest PSA was 0.03 this is called the Nadir or lowest point and 3 years later it's still the same. However it may not be next week when l have my first PSA in 6 months after the last injection. Currently l believe that a maximum of 18 months is sufficient for any stage of cancer but that is only recently but to anyone reading this discuss with your team. I moved house and came under The Christie Manchester . My GP made a mess of my referral even lying that they had done this. At this point I took over management of my own personal as obviously the practice hadn't a clue what they were doing and even my specialist nurse isn't any better. Any l decided to write to the senior urologist consultant Dr Wiley and he personally review ed in detail my results and stated that he was delighted very useful to hear that from a top man . Over time l have studied prostate cancer and learned a great deal about different stages new treatments , trials and such . Since l want to achieve a PhD people are extremely helpful . I learned from a senior radiologist that the best recipient s for radiation therapy are very high Gleasons but he didn't know why. This appears to be borne out by my own case a Gleason score of 4+5=9 which is less aggressive than 5+4 by the way. Almost all prostectomy cases recurrs usually missed cancer cells in the prostate bed and margins. Radiation and hormone treatment sorts that out. I am preparing for recurrence in particular the doubling rate of PSA or velocity. I would need 2 more PSA Tests to establish that. Now the nadir comes to play. My current PSA is 0.03 so say it doubles to 0.06 in 6 months l could have a problem. However if you keep doubling l may still have many years before it possibly started to spread. However this usually takes 7 years or 8 if post prostectomy. Also 50% of all prostate cancers NEVER spread but no-knows why. To be continued Tony

Hi Tony. We are on a very similar path as i was diagnosed a week before you with T3A No Mo a Gleason of 8 and PSA 11. I had twenty fractions and have spent 36 months on Prostap. My PSA has dropped from the first one after RT of .06 to the last one two weeks ago at 0.01. Next one six months time. Get over Easter and try to loose a bit of the weight gain and I'm sure that will be easier said than done.

Hope all goes really well for you with future results.  Best regards Reg

My posts are purely anecdotal and are aimed at my research and experience. I am not a medical professional. However I have researched cancer for 25 years to MSc level. After being diagnosed with prostate cancer l started a PhD focusing just on this although there are 17 variants the communist being adenocarcinoma . For the last three years l have researched all aspects of PCa vigorous ly and not from Google but from experts in their fields. Including The Christie , Weston Park Sheffield , MRI , The Royal Marsden London and Harvard Medical School at senior consultant levels. In particular l am looking at the possibility of reducing fatigue as there is no relevant research on this . Also l am a sufferer too and found also that my fellow patients having radiation therapy were ex prostectomy patients having salvage treatment for missed cancer cells left in the prostate bed and in the margins. I even contact NASA nuclear engineering department for very technical advice on the molecular structure of cancer cells at a sub atomic level and also have had to take up biology to understand the very advanced nature of cancer . My view of prostectomy is that it is way behind new radiation therapy and my comments are my own and not intended to be prescriptive. Do your own research and ask your consultant about subsequent radiation therapy after prostectomy it is very effective . Best wishes Tony

• From my experience that's a great result and a nadir of 0.01 is really good. I am hearing more and more from consultants that just 18 months Hormone treatment is as effective as 36 but check with your professional. Best of luck. Tony

• Next Tuesday 25thApril l have my first PSA test after completing 36 months of Lupron hormone treatment and 37 fractions of external radiation. I cannot find any details of what levels to expect. My Specialist Nurse states up to 2.00ng/ml but l don't think that can be correct. Anyone any ideas as it is worrying ?