I’m a 62 year old man who has been living with prostate cancer for around 12 years. I’ve had a radical prostatectomy and salvage radiation three years after RP. My PSA is currently rising again, 0.67 now. The rise is slow but it’s troubling me! Current doubling time is 26 months.
My post op pathology was very favourable showing cancer organ confined with a Gleason of 3+4, my oncologist didn’t expect me to have further trouble..
I’d be interested to hear from anyone with a similar experience as getting clear answers is difficult.
Thanks
Adrian
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Adjsurf
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Have you received any ADT at any point? RP fails much more often urologic surgeons will have you believe, so unfortunately the recurrence is no surprise. Did you have only the prostate bed radiated or the entire pelvis?
Thanks for your reply. No, I haven’t had ADT yet. I had the prostate bed irradiated, it did result in an undetectable psa for a year but since then there has been a slow steady rise with periods of stability. My specialist nurse team keep saying it’s likely some benign tissue left around nerve sparing, I don’t buy that. My oncologist wants to hold off any further investigation/treatment until my psa reaches 2. I think this is very risky.
You are correct. Have you always had the same oncologist? Your profile seems to indicate a history of a somewhat passive approach. I’m not saying that’s wrong, but it does continue to let the disease regain a foothold.
That’s the risk. In return the good part is you get better QOL early. The bad part is obviously the better odds of advancing metastatic disease.
Have you ever been recommended whole pelvic radiation, ADT, any other drugs along the way? Genetic testing? PSMA pet scans or similar?
My oncologist did send me for a PSMA scan at 0.2 (accepted bcr) and it showed NED I had a further scan at 0.4 and the result was the same. I do feel there is triage occurring in our cancer care system here now, it is counter intuitive to wait to grow a larger problem before acting. I’m going to insist on a further PSMA scan when I meet with my oncologist later this month. Thank you for replying, I knew this situation wasn’t being handled properly and to have a conversation that confirms that makes me more determined. I opted for RP early on to try and find a cure despite the consequences when I was relatively young (52) I also opted for early RT for the same reason. I don’t believe I can have further broad RT to the same area.
I’m hoping my next PSMA scan will show where the recurrence is so a strategy can be planned. Couldn’t sleep much over Xmas with the belief I was sleep walking towards a big problem.
52, that is young for sure. Though not rare of course. I lost a friend to Pca recently that was diagnosed at 52 de novo metastatic. He had a good 15 years having discovered it far at a more advanced stage than most. Your situation couldn’t be more different.
Agree with another commenter to continue to educate yourself about this complex, heterogeneous disease. Be direct with your doctors, make your points known and don’t let yourself get tossed about carelessly, which as you know can happen nowadays almost anywhere. I got my treatment at one of most prestigious centers of excellence in the world and I still have some doubts about the navigation I received.
You’ve come a long way with this already, so I would say more good fortune awaits. There’s a non medical opinion for you, worth what you paid for it. I get lots of that. ‘You look great’, ‘you’ll be fine’ etc. Optimism from others is a wonderful thing, but especially your own. That and plenty of exercise. Stay vigilant and great luck to you!
Thanks! It’s good to talk! My young Spaniel takes care of exercising me every day and keeps my mind away (mostly) from dealing with the crab as I call it. It really is helpful hearing from fellow travellers.
I see from your profile that you are based here in the UK so like me subject to the vagaries of the NHS. Not that I am knocking the treatment I got and continue to get, but things work differently here to how they do in the USA.
My journey sounds similar to yours, but I am a bit further down the line from where you are now.
I was your age when I had my RP and that was followed by salvage radiation 3 years later which knocked my PSA down to a nadir of 0.16 two years later.
It was 6 and a half years after my RP that my PSA started to rise again. It has done that steadily for the last 15 years. Doubling times at the start was troubling but over time the increases slowed so that doubling time was about 36-48 months. Sometimes my PSA would drop too so it was not accelerating away.
At 12 years like where you are now my PSA was 1.89 so yours is lower.
When things took a bit of a troubling rise, I had MRI’s & Bone Scans to see if things were getting out of control.
My consultant always said that if my PSA reached 10 or my doubling time came down to less than a year they would look to start ADT.
Unlike when I was first diagnosed, I did my research as to what this involved and tempered any decision I made with how I felt the outcome would be. It is always best to question what an NHS consultant thinks you should do and I have disagreed with them on numerous occasions and taken as much time as I want before agreeing to more treatment.
When my PSA hit 10 I had a PET Scan and it showed no spread, plus my doubling time was still over 4 years. They wanted me to start ADT then but I declined.
I had made a decision in my head that I would consider it further once my PSA hit 15 or my doubling time came down significantly. When it finally hit 15 I was still not prepared to start ADT as my doubling time was still over 2 years.
But when it hit 20 just 2 years later I agreed to intermittent ADT. Had my first 6 months of treatment and it looks like after 9 months I will need to restart.
That is my journey and one thing I have learned from this site is that no two people’s journey, reaction and outcome are the same, but I hope this may ease your mind a little, as I know how I felt once things seemed to be going pear-shaped again.
Thanks Brian, yes the dreaded psa test can cause a lot of stress. Your reply has given me more room for thought. It’s such a weird disease that doesn’t follow any kind of pattern/prediction. I feel better equipped to talk to my consultant after only two days on this form, I’m grateful for that.
hi. I’m 63 and been living with prostate cancer 4+3 medium grade for 3 1/2 yrs now. Last MRI showed cancer not growing but prostate doubled in size. . PSA is around 12. Have turned down treatment and surgery. Also have BPH. Was having a weak stream and hard to get started sometimes. Tried Dutesteride ( probably misspelled), after 3 weeks of it I felt awful in my butt and had a burning sensation like I had to pee. I stopped taking it and now take saw palmetto and pumpkin seed oil. They work! Now my stream is good and no trouble starting. Than you god. My view on prostate cancer is this. In my case, really nothing to worry about. I don’t understand why the ones with a lesser cancer worries so much. It’s the slowest growing cancer there is and how old do you think we’re going to live anyway??? Guys getting treatment for less than 4+3 just doesn’t make sense to me. It’s quite obvious that the medical profession is geared to make money and they will play on your fears to get you to take some kind of treatment. They scared ME to death with this mess. I was miserable for a whole year. But now that I’m somewhat educated on the subject I’m not worried at all. Now I can relax and be at peace and enjoy the rest of my life and be happy with my wife. I don’t have incontinence nor ED. No diapers for leakage. No complications from any treatment or surgery and I’m still fine. Will monitor by taking an MRI once a year. I’m sorry about all the guys that have had treatment and complications from it. Good luck to everyone and PLEASE do your homework and educate yourselves before deciding on any kind of treatment. I went to proton therapy and saw an old guy waiting for his treatment. I asked how old he was and he said he was 83 yrs old! So I asked him why even get treatment at that age? How long did he think he was gonna live? He said he wanted to be able to go on with his life. Doesn’t add up to me. Seems he was scared into doing it. Heck, I know he was. They’ve tried to do it to ME. Twice!
If you got PMSA scans at 0.2 and 0.4, that does not seem like a passive approach to me. I am in the US, at a major cancer center, and my MO will not order a PSMA test for me unless and until the PSA exceeds 0.5 and preferably is approaching 1.0, in order to improve the odds of detecting any disease.
Yes Gary that sounds right. I think at 0.67 I’m keen to get another scan before it reaches 1.0. I’d rather not wait until 2.0 but my doubling time does give me some time to think. Thanks for taking the time to reply, it’s exactly what I needed from this forum.
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