PSA doubling time after RALP I'm worried

Thanks Steve,

It's the waiting and watching a fast rising PSA that has cemented the decision to proceed with salvage radiotherapy while my psa is low.

The 50/50 cure chance is based on the possibility other cells may have moved outside the prostate area. However with the pathology high risk features and positive margins, I am pretty sure there are microscopic cells there to be zapped.

There are other treatment options further down the line shouldn't need them.....fingers crossed this gets them.

Planning appointment for RT 2moro and getting my first ever tatoos to mark for the laser so I have one up on my kids now lol

Hi Onestepforwards,

Yes I agree with Millibob you should definitely have that conversation, the PSMA PET SCAN seems to be the one to have atm. It would be good to know when you should have it and at what numbers. I've had that chat with my partners Consultant and he said when PSA gets to .1 he will have a PSMA PET and if they find anything it will be targeted with RT.  Partner is having a strong combo of HT which is supposed to be holding things down so maybe in his case .1 denotes change? Are you having HT? I guess that's a different set of rules and numbers if you are not, anyway nothing is lost by having that conversation.

*Well I'm guilty of not reading the whole thread, so ignore .but at the same time useful for someone on HT 

L 

Now looking at your update and YES! definitely have RT now. Hopefully it will clear it up nicely.

Best wishes

L

Hi ,

I didn’t have surgery, so not quite the same , however raising PSA causes anxiety and concerns .

My PSA has gone from 0.34 to 5.12 over 14 months , I have had 2 pmsa scans which have been clear , so I hope this helps as it doesn’t always mean the worst. I have a blood test at the end of May so I want it to finally stabilise.

i wish you all the best moving forward.

Tony

Hi Onestepforward 

Please take a moment to review my profile, where you'll find a detailed account of my journey. In January 2022, I underwent surgery, followed by radiation and hormone therapy eight months later. Despite my PSA not reaching 0.4 and above, my medical team proceeded with treatment. 

Unfortunately, six months after radiation, my PSA began to climb once more. A recent PSMA PET Scan at 0.23 revealed no detectable abnormalities. I am scheduled for a follow-up at the end of June. Should my PSA exceed 0.4, another PSMA PET scan will be conducted.

I understand the uncertainty and concern you may be experiencing, as we all seek answers and solutions in the face of this complex disease. While PSMA PET scans may not be ideal, they are crucial for pinpointing cancer hotspots. I know it may be difficult to wait for your PSA to increase, I am in that boat at the moment, but I feel they need to see where the abnormalities lie to deliver a targeted curative solution. The question is that if they do another PSMA PET scan today and it is clear, what is the the treatment plan? This was the position I was in, my Oncologist treated me based on what he felt was most likely causing the PSA increase. It did bring me massive comfort. I still believe I will be cured despite my PSA climbing again.

The message I am trying to get across is:

• Don't panic or overthink the increase, you have time - Stress is not your friend.
• Get ample sleep, exercise, and eat healthy - these things are very important.
• Stay strong and Believe that you will be cured, don't read to much on google and in the Statistics.
• It is your life and your body, put your mind at ease. If you feel that a PSMA PET scan is right for you now then get it done.
• You are not alone in this.

All of the best

Kind Regards

Munster

Hello Munster 

Thank you for such a supportive post - I love your positive attitude and the 5 bullet points at the end. Thanks for taking the time to post that.

Best wishes - Brian,

Thanks Munster,

Your 5 rules of life are inspiring and I will be using them on the 'down days'. I'm doing the Macmillan mighty hike on Irelands North Coast on June 22nd. 26 miles. This is a great motivation for me and raising money for this charity at the same time.

I'm down for Salvage radiotherapy planning appointment today and I'm going to ask the clinical team about PET scan again. My PSA never went undetectable after surgery and my surgeon said there is cancer cells invaded into my bladder neck so I'm hoping getting this area zapped will sort that. However, if PSA starts to climb again I will be getting a PET scan done straight away. If I can get one done now, I'm going to do that too.

Thanks for the advice mate and taking the time to respond to me. It is very much appreciated and I wish u the best of luck on your journey too

Based upon the history that you have provided, I think I would have made the same decision.  However, given that you have been re-graded T3b (aggressive traits), have you discussed whether the salvage radiation will be prostate bed only, or whole pelvic area (probably up to L5 lumbar) to cover the additional lymph nodes?  The side effects are only marginally more if this extended area is covered. See my bio for more info (although I did not have RALP, I had brachytherapy, which, in a way, mimics it).  AW

Oh, and if they go down the RT route, I expect that they would propose adjunct HT.     AW

Thanks Tony,

Yes, I agree and I am very lucky.....there are a lot of people worse off than me. I'm fit, healthy and relative youth on my side (51).

I hope they can pinpoint your source soon and eradicate it. It all comes down to trusting your team I suppose.

Cheers