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Worried over side effects

User
Posted 22 Jan 2019 at 17:14

I'm now 61 and my PSA levels have been raising since 2016.
I had a Radical Prostatectomy in November 2014 at the time I had a gleason score of 9 . I came out of the procedure with No major side effects. Never incontinent or bowel problems. Sexually active after about 2 months and fine now. Also never suffered any major Fatigue, was back cycling and did the coast to coast .

So now my psa has doubled in the past 3 months from .68 to 1.36 and my oncologist is suggesting I have SRT and HT treatment. Although 1.36 seems low it is the rate over the last year(test every 3 months) it is raising that is their concern .
My concern is I see very little as to positive outcomes re the side effects for this treatment on any pages. I have asked for a bone density test and a ct scan to see if anything shows up other than in Prostate bed, which is where they suspect the failure is.
So my main and major concern is side effects , level of them , any of them . Has anyone had virtually none ?

Steve

User
Posted 22 Jan 2019 at 17:30
Steve

Guess it's a choice of side effects or an early death. I've been on HT 5 months, side effects are awful, I'd be amazed if anyone remains unscathed by removing testosterone from their bodies.

Its life Steve but not as you know it.

John

User
Posted 22 Jan 2019 at 17:37
Check my story. My post op psa is now 82. I’m only 51. I’ve refused RT and HT si far. It took me 2 yrs to regain an erection and I’m not in a rush to lose it again. I’m opting QOL till something starts hurting. I know I wouldn’t cope mentally with monkdom!

If life gives you lemons , then make lemonade

User
Posted 22 Jan 2019 at 18:11

Steve

I has salvage radiotherapy last year at the age of 48.  I’m also on 18 months of HT.  Radiotherapy wasn’t easy with serious continence issues.  Fatigue also a problem.  I had the symptoms of radiation proctitus about two months after treatment.  Bowel control a major issue.  Less so now, six months on, but did manage to soil myself on my way to an appointment in town just last week.  The HT has made most of my body hair fall out and i’ve put on about 6kg in weight - the equivalent of 24 250g blocks of butter!  Fatigue is an issue but not as bad as it had been.  I'm on bicalutimide tablets which, i understand, have fewer side effects than the injections.

i hated RT and i hate HT, but i've no regrets - i want to live.

Ulsterman

Edited by member 22 Jan 2019 at 18:14  | Reason: Not specified

User
Posted 22 Jan 2019 at 18:28
I am a bit shocked that they have left you to get to such a high PSA before suggesting salvage treatment - your PSA is 10 times higher than I would have expected as a trigger point. Are the decimal points definitely in the correct place?

John had salvage RT / HT 6 years ago - or possibly longer. He had no side effects from RT and never missed a day's work, carried on playing rugby and going to the gym. He is just now starting to see some delayed ED issues; he can get an erection but is starting to find it more difficult to sustain erections for a long time. Otherwise, it was a breeze.

The HT was a different matter; he hated it and stopped early (6 months).

Depending on whether your PSA was good and low post-op and has only risen subsequently, you are displaying a classic trend for cells left in the prostate bed and I can see why there might be resistance to giving you fancy scans on the NHS. If on the other hand, your PSA has never been undetectable, a PSMA or Gallium 68 scan might be really useful.

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

User
Posted 22 Jan 2019 at 18:30
PS I forgot to say ... you comment that you see few positive stories on here for the outcomes of salvage RT. One outcome that should not be discounted is remission, or at the very least a significant delay. John is only one of many men on here who continue to have great PSA results many years after salvage treatment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jan 2019 at 19:42

 Steve, like Lyn I am surprised your PSA has been allowed to reach this level before suggesting SRT/HT. 

Your recurrence does appear to fit a pattern of local cells in the prostate bed but i personally would ask for a bone scan and an enhanced MRI to check things out.

 A PET scan would be appropriate too but would unlikely be funded.

I have been through prostatectomy, SRT and am finishing 27 months of HT.

The side effects are significant for me and for many others I’m sure and my recurrence fits a different pattern. But despite that i went ahead with a final curative attempt as that was my choice(and my wife)

Your PSA is increasing so you  can either choose not to do anything about that with QOL a priority over time or you tackle it with SRT, HT, or both to possibly extend life.

At 61 and with a rising PSA i would think very carefully about what you do.

If you do decide to have treatment the quicker you get started on HT the better.

Not an easy choice, none of this is.

Ian

 

Ido4

User
Posted 22 Jan 2019 at 20:27

Thanks all for replies so far,

My psa at the start off all this was 5.4 in 2013, then at pre operative it was 9.57 in 2014 . It dropped to 0.01 after the operation and stayed there till 2016 when it started to climb on 3 month checks approx. . 0.08, 0.10, 0.15, 0.22, 0.28, 0.29, 0.38,0.54, 0.68, finally 1.36 as of today . I have had a galidium pet scan in London in july  2017 which picked up nothing at all . 

So I have opted to observe , yes I could have initiated treatment earier but I really struggle with them not knowing where any issues are exactly and my health has and is very good. I have requested bone test and a ct scan to see if anything can be located . 

Then I will decide what I will do 

 

Steve

User
Posted 22 Jan 2019 at 21:03

Unfortunately, a small number of men, like our member Chris, do not show clearly where their cancer is on advanced scans or even on pretty standard ones in some cases. This of course makes it very difficult to know where to aim RT. Quite often this is directed at the area in and around Prostate Bed as being the most likely affected area though not definitively. It follows that the earlier salvage RT of one type or another can be accurately aimed, the better the chance of it stopping spread and gaining heterogeneity. I agree it would make sense to discuss with an Oncologist what scans might be helpful to possibly show and then treat any cancer found.

Edited by member 22 Jan 2019 at 21:05  | Reason: Not specified

Barry
User
Posted 22 Jan 2019 at 21:28
I’m not sure what benefit there is stating his medical team should have intervened earlier. We don’t know what conversations have taken place. It could also have caused unnecessary anxiety. Fortunately that doesn’t seem to be the case.

I had adjuvant RT 5 years ago and to this day have not had any noticeable side effects.

Bri

User
Posted 22 Jan 2019 at 22:18

Sorry i asked why psa was allowed to reach that point, no distress intended just trying to help. 

Ian

 

Ido4

User
Posted 22 Jan 2019 at 22:32

Hi Ian i also applogise as i wasnt intending to have a go. It is possibly the way i am feeling at the moment but i do think we sometimes say things in posts without considering possible consequences

Hope you are well

Bri 

User
Posted 22 Jan 2019 at 22:48

Thanks Bri, sometimes the written word can come across differently than intended. When I was working in my school this happened many times with emails so I know exactly what you mean.

I hope your PSA is remaining undetectable and that you are well too.

Cheers,

Ian

 

Ido4

User
Posted 22 Jan 2019 at 23:04
I will know how the PSA is behaving on the 5th Feb. Real squeaky bum time after the last rise.

I see you are in Edinburgh. I have lots of family who live in and around there. My dad was from there.

Bri

 
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