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3 Years Since Surgery

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User
Posted 17 Jun 2019 at 12:34

Hi all,

I had an RRP in May 2016 aged 49, my 6 week PSA showed my reading to be still 2.8 so I had 61/2 weeks of radiotherapy which reduced it to the negligible 0.01 (or something similar...)

I requested to stop the hormone treatment and my PSA rose to 0.1, however, the hospital were not concerned and deferred my next appointment for 12 months...

Today I have seen my consultant and she advised that my PSA is now 4 so I am having a bone scan on Friday and a CT scan sometime after...

She said it has possibly risen because I stopped the hormone treatment...?

Anyone been in a similar position, obviously a bit worried but I feel fine!

Andy

User
Posted 17 Jun 2019 at 13:11
Hello Andy you should click my picture and read my profile. Very similar to you. I am now exactly 4 yrs post op. My post op psa was 1.5 and doubling rapidly. I had lymph nodes cancerous too. They offered me RT but said it wouldn’t be curative so I’ve never had it. I did 11 months on tablet HT which reduced PSA but we decided to look for cancer so stopped HT. I’ve had two PET , numerous bone and CT scans. They still can’t find anything anywhere. My psa is over 100 now. I think they won’t start further treatment until they visually see something. This is because I’ve refused RT S six times now. I’ve had four amazing years with instant continence post op and full erectile function for the last two years. I’ve been living every minute. I’m not even sure I want HT or Chemo. My GP said my cancer will be symptom based and will just show up somewhere and we can devise a plan from there. Good luck
User
Posted 17 Jun 2019 at 15:14
With high post op results , it’s always likely the cancer has already moved on from the prostate area. Yes you went for the best bet but it seems you’ve reduced the chance of recurrence down there but not stopped the cancer. RT is best for people with really low post op psa which then very gradually rises. Cure is on the cards then !! I don’t think I’ll ever regret not having RT and I have it in the bag for anything that arises. With my psa as high as it is , then it would be visible by now if it was in my prostate bed. I sometimes lie awake wondering what the hell is happening and where , but mostly I’m just trying to live a totally normal life and put it to the back of my mind. Maybe I was better advised than you. Maybe not !! But yes they wanted me to have RT but they advised it was unlikely to be cure. To be honest I was devastated by the surgery as a young man and I didn’t want further damage on a whim.
User
Posted 17 Jun 2019 at 15:30

Andy

I had my prostatectomy at the age of 46.  Within a year, my PSA had risen on each test and so I had radiotherapy.  Unlike you, I stuck at the HT, though there are days I'd really like to just stop taking it.  I finish 18 months of HT in August.  Afterwards, I'm hoping my PSA will not rise.

You're doing the right things getting the scans as your oncologist will have a better idea how to proceed.  However, the scans don't always provide the clearer picture the oncologists are looking for.

Ulsterman

 

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User
Posted 17 Jun 2019 at 13:11
Hello Andy you should click my picture and read my profile. Very similar to you. I am now exactly 4 yrs post op. My post op psa was 1.5 and doubling rapidly. I had lymph nodes cancerous too. They offered me RT but said it wouldn’t be curative so I’ve never had it. I did 11 months on tablet HT which reduced PSA but we decided to look for cancer so stopped HT. I’ve had two PET , numerous bone and CT scans. They still can’t find anything anywhere. My psa is over 100 now. I think they won’t start further treatment until they visually see something. This is because I’ve refused RT S six times now. I’ve had four amazing years with instant continence post op and full erectile function for the last two years. I’ve been living every minute. I’m not even sure I want HT or Chemo. My GP said my cancer will be symptom based and will just show up somewhere and we can devise a plan from there. Good luck
User
Posted 17 Jun 2019 at 13:25
Thanks Chris,

I'm really not sure what to think... I had some lymph nodes removed during my RP because the cancer had 'popped out' the back of my prostate...

The RT was supposed to be 'belt and braces', it did seem to work in clearing the cancer completely but affected me from an ED perpective, nothing in that department though I was prescribed a pump and Invicorp injections!

I guess it's just wait and see and deal with whatever is thrown at me! :-)

User
Posted 17 Jun 2019 at 15:14
With high post op results , it’s always likely the cancer has already moved on from the prostate area. Yes you went for the best bet but it seems you’ve reduced the chance of recurrence down there but not stopped the cancer. RT is best for people with really low post op psa which then very gradually rises. Cure is on the cards then !! I don’t think I’ll ever regret not having RT and I have it in the bag for anything that arises. With my psa as high as it is , then it would be visible by now if it was in my prostate bed. I sometimes lie awake wondering what the hell is happening and where , but mostly I’m just trying to live a totally normal life and put it to the back of my mind. Maybe I was better advised than you. Maybe not !! But yes they wanted me to have RT but they advised it was unlikely to be cure. To be honest I was devastated by the surgery as a young man and I didn’t want further damage on a whim.
User
Posted 17 Jun 2019 at 15:30

Andy

I had my prostatectomy at the age of 46.  Within a year, my PSA had risen on each test and so I had radiotherapy.  Unlike you, I stuck at the HT, though there are days I'd really like to just stop taking it.  I finish 18 months of HT in August.  Afterwards, I'm hoping my PSA will not rise.

You're doing the right things getting the scans as your oncologist will have a better idea how to proceed.  However, the scans don't always provide the clearer picture the oncologists are looking for.

Ulsterman

 

User
Posted 19 Jun 2019 at 17:55

Hi, I often wonder how it works and from what you've written:   Your psa was 2.8 after the op.  Then you had RT and it went down to 0.01.  Then you had hormones and stopped taking them and it went from 0.1 up to 4 in 12 months.

I'd have thought it having gone down to 0.01 after RT would be a good result.  Presumably the hormones are a belt and braces after the RT.    When it went up to 0.1 you would have thought they'd be more interested than offering annual psa checks.

Now it's gone to 4 and they're looking for where it is.  As Chris has written his is 100 and they can't find it.  Yet some it never goes above 4 and they have a bad case.   My psa was 9.9 and the tumour was 13mm diameter you might think with a psa of 4 it might be 7mm diameter and with a 100 much larger but perhaps more diverse.

I hope they find yours, there are moves to improve the treatment of external spread so you could perhaps ask about that.  They seem to be treating you correctly although the annual blood checks perhaps would make you query about any extended timescales they might offer you.  All the best Peter 

 

User
Posted 19 Jun 2019 at 18:42
It is more likely that it was the HT that brought the PSA down to 0.01 rather than the RT. With a post-op PSA of 2.8 many oncos would not have offered adjuvant or salvage RT as the likelihood was that the active cancer cells were not just a few leftovers in the prostate bed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jun 2019 at 20:14

Did you have a PET scan to try and find the source of the 2.8 PSA before the radio therapy? 2.8 is enough to stand a good chance to show up on a choline or PSMA PET scan.

If not, it does rather sound like the RT didn't hit the source of the 2.8 PSA. That might mean that if a scan can find it, it may be in a different area, enabling you to have more RT on it. You might not be able to have more RT where you've already had it, depending if you had the max lifetime dose already. (As a multimodal treatment, you probably didn't, but if it was done as salvage RT, you might have.) If it's pinpointed to one or two lymph nodes, those might be treatable with one of the more focused RT techniques.

Ideally, you start HT 3-6 months before the RT to get PSA to a minimum so the PCa cells are restricted in growing as much as possible, which helps prevent them recovering between RT fractions. RT carries on "cooking" prostate cells for up to 18 months after the treatment, and continuing HT as long as possible over this period continues to make the "cooking" time more effective.

Were you given any advice on outcomes if you stopped HT early? If the source of the 2.8 PSA is in the prostate bed (or wherever they directed the RT), then coming off it early increased the risk (but no one can say it's entirely responsible - it might have happened anyway). If the source of the 2.8 PSA is elsewhere, then it was going to spring up again whenever you stopped the HT, regardless how long you were on HT.

User
Posted 22 Jun 2019 at 11:34

** Update - 22 June 2019 **

Hi all,

Thanks for your responses...

Since meeting with my Oncology Consultant on Tuesday morning and finding out that my PSA had risen to 4, I have had a CT scan (Tuesday afternoon) and a bone scan on Friday morning...

I spoke to my consultant's secretary Friday afternoon to try and get a quick appointment (currently set for 5th August), howerver, until the results are known she cannot do that...

I have been spending quite a bit of time in Spain over the past year, since my marriage broke down and I have felt a lot better about things, I am flying back tomorrow (Sunday) morning but expect I will have to return within the next couple of weeks if the results show something not quite right...

I really don't know what to think at the moment though I do feel positive...

After the prostatectomy my life was a bit of a blur but from recollection I don't think I was offered a choice with regard to RT, I was basically told that there was still some cancer cells in my prostate bed and they needed 'zapping out' - I still think hat the RT caused me more problems that the initial surgery, my bladder, bowel and sexual function have all been affected with the latter a tough one one to accept particularly as I am still only 52!

Anyway, I will wait and see what the outcome is and deal with it accordingly!

Will keep the post updated!

Thanks again

Andy

Edited by member 22 Jun 2019 at 11:38  | Reason: Not specified

User
Posted 17 Jul 2019 at 15:46

** Further update **

Good news... both scans were clear so that is a huge relief!

My PSA has risen again however, it is now 5.6

My consultant explained that there may be some 'microscopics' lurking but until they materialise then I will continue having 6 monthly PSA checks and urology appointments!

Andy

User
Posted 17 Jul 2019 at 19:27
Sounds very similar to my story. I refused the RT though. Psa well over 100 now. They don’t even test it as I’ve refused treatment till they find something. I’m four years post op and fully recovered in all ways. I’m 52 also. I’ve had that many scans it’s affecting my kidneys so I’m six monthly also. They can’t find anything at all. I know it will get me but I’m enjoying every moment I can .....
User
Posted 17 Jul 2019 at 20:00
Soz forgot I’d posted before !
User
Posted 18 Jul 2019 at 09:27

Andy,

With a PSA of 5.6, there's a good chance the source would show up on a PET scan.

In your position, I would push for one of those, to know what's causing it.

Cheers, another Andy.

User
Posted 21 Jan 2020 at 11:50

** Dec 2019 - Jan 2020 Update **

My PSA is now at 35...

I am dues to have another bone scan this week and a CT scan next week before seeing my consultant on 10th Feb.

Not what I was hoping for, something isn't right, jut need to find it!

Andy

User
Posted 22 Jan 2020 at 08:44
Would not a PSMA Pet Scan be an option for you now?

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 22 Jan 2020 at 10:02
I’ve literally just had repeat scans to confirm two spine mets and two abdominal lymph’s enlarged. Psa was over 200 six months ago. Still nothing at all showing in my pelvis area so I’m still happy I refused RT.

Good luck

 
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