Confused Now

User

Posted 06 Aug 2019 at 15:55

Hi All since last posting, had 33 sessions of RT finished 10th June. Seen Consultants Registrar today who tells me that latest PSA has come down from0.206 to 0.03, which is where it was after RP in January 18. Not what he was looking for, said Cancer has not been removed. Will wait for another PSA in 3 months and make a decision what to do then.

I feel that 33 sessions of RT have been a waste of time, taking into account all the trauma that goes with it.

Has anyone experienced this position, and can let me know what might lie ahead.

Please help. Thanks Barry

User

Posted 15 Aug 2019 at 17:36

Thanks Stew I really hope you get there. Saw Consultant today regarding ED and she said 0.03 is brilliant! I will wait the 3 months now in a better frame of mind, and see what Oncology Consultant (not registrar) has to say. Will let you know then.

Many thanks to all who responded.

Best Wishes

Barry

User

Posted 16 Aug 2019 at 05:37

Barry, did you get a prescription for Tamoxifen for the breast growth? In my case at least, it was very effective.

Best wishes,

Chris

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User

Posted 06 Aug 2019 at 16:30

I’m not sure why he thinks those results are bad. That score is undetectable again surely ?? I don’t think you’ve wasted your time at all. My case is entirely different which is why I rejected RT as a waste of time. Good luck

User

Posted 06 Aug 2019 at 17:31

Hi Barry, I had salvage radiotherapy alongside HT and my PSA is <0.1 so I could be as high as 0.04 but my testing doesn’t go to 2 decimal places. Did you have HT alongside the SRT? It would be useful if you had a complete profile with all your treatments, results with dates. See my profile for how it went for me.

I would ask your oncologist why he thinks 0.03 is a failure.

I would have thought a rising trend would indicate failure.

Ido4

User

Posted 06 Aug 2019 at 17:35

Could the registrar just not be very experienced? Ridiculous to cause you unnecessary anxiety - your PSA is looking pretty perfect to me already and the RT will continue to work for 18 months which is when you should reach your nadir.

I would give your allocated nurse a call (if you have one) or call the consultant's secretary and ask for a phone consultation to clarify.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Aug 2019 at 17:36

PS - is it definitely 0.03 and not 0.3?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 Aug 2019 at 17:24

Many thanks for positive replies, feeling better now. Lyn it is 0.03, and yes we did feel that registrar was not very experienced.

I am taking 150mg Bicalutamide hormone tablets, and explained to him that my breasts were growing and nipples are very sore. He said they would see me in 3 months time and make a decision on what to do then. I notice on blood test envelope he has not only ticked PSA but also Liver, Bone, U & E Creatine and Full Blood Count. Not sure why all these. Just hope my Oncology Consultant is around at next meeting.

Once again many thanks for replies.

User

Posted 08 Aug 2019 at 18:17

Those tests were standard for me 3 monthly. Just an essential organ check to be honest. I’ve not had a blood test in 6 months now nor a psa , despite it being 83 back then. Prob over 200 now. He’s letting me live my life till they can actually identify spread which they can’t despite the best scans. Me refusing RT continuously hasn’t helped I guess. It’s catch 22. My family and I think we are doing the right thing for me.

That’s a great Psa !! Celebrate.

User

Posted 08 Aug 2019 at 18:48

Originally Posted by: Online Community Member

Barry, if there is anything you can do to get this sorted now, then do it. 3 months' time will be too late for RT to the breast buds and may be too late for Tamoxifen to work properly. Not all CCGs permit men to have either treatment but it is definitely worth a call to your clinical nurse specialist / urology nurse or a call to the consultant's secretary.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 Aug 2019 at 16:21

Originally Posted by: Online Community Member

I feel that 33 sessions of RT have been a waste of time, taking into account all the trauma that goes with it.

Has anyone experienced this position, and can let me know what might lie ahead.

Please help. Thanks Barry

Barry, I was at PSA of 16 (down from 62 at diagnosis, Gleason 4:4) at the start of 37 sessions of RT; by the end of those sessions, last November, it was down to 7.1. I saw that as great progress, more than halving it. With the ongoing HT it has come down to 0.5 this week, the first time I've had a "nought point something" reading, so I'm very happy with the progress. I was sold it on the basis of a 3 year treatment programme and am not much more than a year into it, so I am very optimistic about the outcome. I'd be delighted to get a "nought point nought something" reading.

User

Posted 15 Aug 2019 at 17:36

Many thanks to all who responded.

Best Wishes

Barry

User

Posted 16 Aug 2019 at 05:37

Barry, did you get a prescription for Tamoxifen for the breast growth? In my case at least, it was very effective.

Best wishes,

Chris

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