Popeye Posted July 3, 2018 Share Posted July 3, 2018 This is for members who may be interested in my little adventures with this disease. Since my salvage prostatectomy, cystectomy, appendectomy back in November 2014 my PSA remained undetectable until 2016 and then started rising. Over the past 18 months the PSA was doubling approx every four months. In March 2017 when my PSA was 0.26 I had a PSMA gallium 68 scan that was negative so I was back to just hanging about. My PSA recently hit 1.8 and I have just returned from Townsville after another PSMA scan that returned positive results. The news was good and bad news. Bad news because there were two mets discovered with another area suspicious. Good news because my mind was expecting much more invasion than was found. I have one 10mm tumour adjacent to my S3 vertebrae and another 10mm tumour adjacent to my rectum. The suspicious reaction was in an area near my left ureter of my urinary diversion. Interestingly no bone reactions just tissue related stuff. Members of this forum may be surprised that I had almost made up my mind not to have any treatment based on the results of the scan if it was real bad news. My previous experience on eligard ADT and search information on chemo that I have read about led me to that decision. I was not looking forward to a downward spiral in my quality of life on these treatments. I figured my QOL at the moment was reasonable and the fact that I will turn 71 in September will do me nicely thank you and I was not looking forward to senility with adt and chemo brain. Discussion with my urologist in Townsville has changed my attitude somewhat. He was sympathetic to my arguments but has suggested I go back on ADT using firmagon which is different than the luprons etc. The downside is of course the injections are monthly and painful for some patients, he then gave me two things to ponder about while making a decision. Firstly he guaranteed that firmagon would put these lessions to sleep for at least two years and secondly I could always choose to stop the firmagon at any time. So I have re-thought this matter since my visit and the fact that the lessions are small in number I have decided to give firmagon a go and see where it leads to. On a related matter the patient travel subsidy scheme recently declined my application for this latest visit to Townsville. Their reason for this decision is that the Mackay Base Hospital now has a resident urologist and my treatments should be done locally. I have appealed this decision and am hoping to take this further. While I have no issues personally with the resident doctor my preference is to stay with my urologist in Townsville as we have built up a mutual respective doctor patient relationship. He was the surgeon who demonstated great skill in my salvage surgery in 2014 and has carried out numerous other procedures prior to and since that time. My belief is that this medical relationship should continue for the betterment of my chronic condition. While I will be able to afford to travel the 1000km return trip and pay for accomodation there is sure to be other chronically ill patients who will not be able to do so. I accept that the public system has the beaurocracy to rigidly adhere to rules and that I am a public patient now. The original reason I went to this doctor was because I was then in private health and the Base Hospital in Mackay did not have a resident urologist at the time. Thank you for reading this. Popeye Link to comment Share on other sites More sharing options...
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