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Starting Salvage RT earlier than I expected.

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User
Posted 28 Jan 2023 at 15:56

MY PSA has been creeping up over the last 9 months or so, undetectable, 0.03, 0.07, 0.13 & then down to 0.11 in December. My Urology Consultant phoned me in October to discuss how things were progressing & said he was referring me to Oncology as he expected my PSA to breach the 0.20 threshold shortly & it was time to look at "the next steps" as always anticipated.


1st appointment with Oncology on Friday 13th (!) January this year, I expected just for a chat and talk about possible options in the future.


Not quite, their plan is to hit it hard & early to achieve the best outcome (apparently because I was Gleason 9 & cancer was deemed very aggressive, RT when PSA rises 3 times or more to above 0.10 is the current thinking) 


So I'm down for 33 fractions along with HT - Bicalutatamide 150mg & Tamoxifen 10mg, although if I'm not happy with the HT, it can be stopped if requested. Marker session is booked for next week. They don't hang about!! 


 


 

User
Posted 13 Mar 2023 at 15:28

Chris, many thanks, it what it is, just another step along the way. Sods law that my last RT appointment at Derby conflicts with my next lot of spinal injections at King's Mill Hospital by 1 day although Consultant there has said he will work around my RT.


It looks like you are going through the mill again, really sorry to see this, if you want to chat, just let me know my friend. 


Steve

User
Posted 29 Jan 2023 at 17:44

I'm just coming to the end of six months 150 mg of Bical. I've not found it too bad. The side effects of the RT were in fact more bothersome. I've not had any hot flushes, it's mainly been sore nipples and the loss of libido. I didn't get Tamoxifen at the start of HT, so hopefully sore nipples won't be a problem in your case.

User
Posted 31 Jan 2023 at 19:14

Originally Posted by: Online Community Member


ProstatePete, started the HT this morning, so far no hissy fits, went for a brisk ish stagger around the village. SRT is now anticipated to be in 5 to 6 weeks. Many thanks. Steve



 


Well done. Cardio / resistance exercise and a good diet are important on HT as it can cause some muscle loss (I emphasise some!)


 


P

User
Posted 30 Mar 2023 at 23:17
With positive margins and that PSA pattern, you seem to be a classic case for recurrence in the prostate bed. If the PSMA doesn't spot anything, I think I would take a punt on the salvage RT. John had salvage RT 11 years ago and it mostly seems like a distant memory now.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Apr 2023 at 22:59

Perhaps the scholars would have a look at the above article that popped up today on practice update. It relates to when salvage RT should be carried out. It is research that was done between 1990 and 2020.


https://ascopubs.org/doi/full/10.1200/JCO.22.02489


Thanks Chris


 

Edited by moderator 06 Jul 2023 at 13:14  | Reason: Not specified

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User
Posted 28 Jan 2023 at 21:37

Staggered, sorry to see you back on here with not so good news. Hope things work out for you. 


Thanks Chris 

User
Posted 28 Jan 2023 at 23:58

Cheers Chris,


I was told to expect it at some point & I've had almost 3 years without any real issues since the surgery, so all in all I'm quite lucky. The Onco Consultant seems well respected - he's also in partnership with my surgeon in East Midlands Urology practice. I've been following your progress & watching the numbers, how are you doing?


Take care buddy.


Steve

User
Posted 29 Jan 2023 at 01:12

Very similar to John; his urologist would have referred him to oncology at 0.1 but J was in denial and said no thank you (denial has been a very good strategy for him as it turned out, although it drove me to distraction in those early years). By the time he was referred, his PSA had risen to 0.14 I think - bicalutimide started that day and his SRT was 2 months later. He had the HT for 6 months. That was nearly 11 years ago so turned out well! 

Edited by member 29 Jan 2023 at 01:15  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jan 2023 at 06:33

Your case is very similar to mine.  Prostatectomy in December 2016.


Jan 17 PSA 0.014  April 17 0.015 July 17 0.019 October 17 0.023


Jan 18 decided I needed salvage radiotherapy.


This is the important bit......without a scan, salvage treatment is a bit of guesswork.  My Oncologist planned to treat a small area.  I paid for a psma scan and it showed 2 nodes outside the proposed treatment area.  This completely changed my treatment plan.


I also had bicalutimide for 18 months and tamoxifen. 


My PSA has been <0.006 ever since.  ((Although I get my annual blood test result tomorrow....hopefully it'll still be the same.))

User
Posted 29 Jan 2023 at 15:19

Many thanks for the reply, appreciate the denial bit (from both sides) I think Julie would set about me if I said I don't want treatment although, she has yet to experience me during the Manopause!!   I was tempted to say wait, but would just be stressing that it was spreading, so sod it, what's the worst that can happen (living in the toilet probably).It's just another little adventure & it gets me out of the house for a while. 😂😂

User
Posted 29 Jan 2023 at 15:57

Steve, despite having SABR treatment to a pelvic lymph node last August, the PSA is still rising. Next scheduled test in 7 weeks with appointment with onco a week later. 


Onco says it is a possibility that the PSA is coming from a different source. 


I do have a bias towards PSMA before salvage RT, mainly because there was possibly something outside my prostate bed and SRT didn't get all the cancer and did my bladder no favours. 


Your PSA level is below the traditional level for a successful scan and waiting for a rise presumably is a risk.


Hope all goes well for you, are the support meetings back to normal,do you still attend.


Thanks Chris 


 

User
Posted 29 Jan 2023 at 15:58

Really hope your PSA remains that low. I asked about getting a fresh scan but both the Consultant & his Registrar were adamant in the opinion that my PSA is still too low for a PSA scan to highlight any lesions & that if there was a liklihood of breakout, my PSA 3 years after RP would be much higher, as such I can't really argue with the logic. I suppose only time will tell! I'm not too concerned about the radiotherapy, not looking forwards to the HT but reassured that I can stop if it gets too much, also that the Consultant at another hospital I attend for spinal injections every 3 months has said he will work around any other appointments I may have.

User
Posted 29 Jan 2023 at 17:44

I'm just coming to the end of six months 150 mg of Bical. I've not found it too bad. The side effects of the RT were in fact more bothersome. I've not had any hot flushes, it's mainly been sore nipples and the loss of libido. I didn't get Tamoxifen at the start of HT, so hopefully sore nipples won't be a problem in your case.

User
Posted 29 Jan 2023 at 20:55
I would say don't turn down the HT - my reading of most recent papers suggests it has a major impact on success rates.

For most people the side effects are annoying rather than a real impediment to life but weight gain and emotional issues are important to look out for.
User
Posted 31 Jan 2023 at 15:17

ProstatePete, started the HT this morning, so far no hissy fits, went for a brisk ish stagger around the village. SRT is now anticipated to be in 5 to 6 weeks. Many thanks. Steve

User
Posted 31 Jan 2023 at 15:32

Hi Chris, many thanks for your reply, sorry you're still having issues, the meetings seem to be back now although I haven't been since Covid, I went to a few after surgery but other things got in the way. I must get back into a routine - although if they gave advance notice of the topic it may be useful. Take careSteve

Edited by member 31 Jan 2023 at 15:33  | Reason: text

User
Posted 31 Jan 2023 at 15:34

Hi Chris, many thanks for your reply, sorry you're still having issues, the meetings seem to be back now although I haven't been since Covid, I went to a few after surgery but other things got in the way. I must get back into a routine - although if they gave advance notice of the topic it may be useful. Take careSteve

User
Posted 31 Jan 2023 at 19:14

Originally Posted by: Online Community Member


ProstatePete, started the HT this morning, so far no hissy fits, went for a brisk ish stagger around the village. SRT is now anticipated to be in 5 to 6 weeks. Many thanks. Steve



 


Well done. Cardio / resistance exercise and a good diet are important on HT as it can cause some muscle loss (I emphasise some!)


 


P

User
Posted 13 Mar 2023 at 14:20

Well, Phone rang this morning, I start 33 fractions SRT tomorrow 11am- at least no time to dwell on the upcoming. Am now 7 weeks into the HT with no discernable effects other than a bit of belly & unusual for me constipation, the biggest pain is having to chop my Tamoxifen in half every other day (my GP changed my scrip to 20mg in half a day as, 10mg tablets cost NHS 10 times more) so happy to do it.Keep you updated as the weeks drag on.


Cheers, Steve 

User
Posted 13 Mar 2023 at 14:50

Steve,


Thats interesting, following my 3rd Prostap injection my gut has been all over the place. Constipation mainly and just no urge to go. I’m normally as regular as clockwork after breakfast. Also my gut felt inflamed as if someone was twisting it inside and I felt nauseous at times. My GP said he thought my bowel had slowed down and gave Laxido which has at last helped. A also learned that massaging it can help so been doing that. I’ll be interested to hear how you get on moving forward.


Derek

User
Posted 13 Mar 2023 at 15:02

Steve, hope all goes to plan.


Thanks Chris 

User
Posted 13 Mar 2023 at 15:28

Chris, many thanks, it what it is, just another step along the way. Sods law that my last RT appointment at Derby conflicts with my next lot of spinal injections at King's Mill Hospital by 1 day although Consultant there has said he will work around my RT.


It looks like you are going through the mill again, really sorry to see this, if you want to chat, just let me know my friend. 


Steve

User
Posted 13 Mar 2023 at 15:39

Derek, when I was diagnosed, I told the Uro Consultant that I really didn't want HT & he was prepared to support me & perform the surgery. When I met the Onco Consultant in January, he referred to my reluctance about HT & put me on tablets rather than injections as side effects are likely to be less severe & if I experience problems with them I can stop at any time. Hope your issues ease off going forward. 


Cheers, Steve 


 

User
Posted 30 Mar 2023 at 22:06

Just starting on this ‘Round Two’ journey. RALP Jun21. Contained, Gl7(4+3) with tertiary 5. PT2c. 2x positive margins, no lymphs removed. Undetectable 3-monthly PSA up to the 12m point, then 0.04, 0.04, 0.08 and 0.10 @ 21m post-op. Saw Oncologist today after requesting referral from Urology. He considers this recurrence, but likely localised. Bloods taken (at third attempt and with second nurse). No plasters (hadnt realised the NHS was in such dire straits, lol). PSMA PET scan being booked. Currently 10 weeks due to isotope manuf issues, but should come down to 6-8 weeks during April, apparently. Assuming prostate bed only, he suggests four weeks of daily dose. Now  cr&pping myself that there’ll be metastases seen on the scan. Read some papers and played with the MSKCC nomograms - surprised at how the long-term stats have worsened vs. post-RALP. Having a drink - rough day, its a bit like being at the start again…

User
Posted 30 Mar 2023 at 23:17
With positive margins and that PSA pattern, you seem to be a classic case for recurrence in the prostate bed. If the PSMA doesn't spot anything, I think I would take a punt on the salvage RT. John had salvage RT 11 years ago and it mostly seems like a distant memory now.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Mar 2023 at 07:37

Thanks Lyn - indeed. Thats the plan, just coming to terms with it. 

User
Posted 02 Apr 2023 at 11:09

Hi Staggered. 


I had surgery in June 2020. Positive margins and PSA of 0.2 rising to 0.5 after 3 months. T3a.


Started HT (Prostap 3) and RT in Dec. Didn't mind the RT at all. A bit of a faf with hydrating before but treatment itself easy.


I found the HT quite hard with loads of flushes and big loss of strength and energy. Last HT injection in April 22, so in my system fully until July. 


My testosterone has started coming back over the last couple of months and my energy has increased tremendously.  👍


Good luck on your journey.


Jim


 


 

User
Posted 05 Apr 2023 at 13:18

Short update - PSA now at 0.2, thats doubled (or jumped 0.1, depending on how you look at it) in just four weeks. There was me thinking we were ahead of the game having ‘the chat’ at 0.1 …


ONC saying they don’t see any benefit in pursuing a private PSMA PET scan, but with current 6-10wk wait I’m very concerned at growth in the meantime.


They don’t see next treatment step as urgent; they suspect radiotherapy but need to await scan to ensure this is correct way forward (obviously); and are “hopeful that unless the scan shows cancer away from the prostate bed that we are still hoping to cure you”.


Any thoughts? All seems a bit too relaxed to me, but then I’m on this side.

User
Posted 05 Apr 2023 at 22:29
With that positive margin you know where you have some cancer left. I think you are right to be concerned about your oncos ambivalence.

You really have 2 choices press for salvage RT now OR wait until you can get a scan anticipating it may change the RT targets.
User
Posted 05 Apr 2023 at 22:39

Am actively pursuing a private scan, assuming that should be available on a more reasonable timeline. Sod the cost. 

User
Posted 05 Apr 2023 at 22:55

Chippers, my private onco requested a PSMA scan on 31/3/23, my scan is booked for 24/04/23. I have got to travel just over 100 miles.


Thanks Chris 

User
Posted 05 Apr 2023 at 22:59

Perhaps the scholars would have a look at the above article that popped up today on practice update. It relates to when salvage RT should be carried out. It is research that was done between 1990 and 2020.


https://ascopubs.org/doi/full/10.1200/JCO.22.02489


Thanks Chris


 

Edited by moderator 06 Jul 2023 at 13:14  | Reason: Not specified

User
Posted 06 Apr 2023 at 14:05

Thanks Chris, I did a huge amount of reading on these factors before I had SRT. All studies seem to point towards early initiation of SRT and with PSA below 0.2 or 0.25 being significant in terms of all cause mortality and prostate cancer mortality.
Thus study confirms this. It also states that the actual delivery program of SRT is altered after PET and MRI scans show where any recurrence is. Whether being able to tailor the SRT according to scan information improves mortality is now to be studied, it will be interesting to see what that concludes.


Most studies also show that higher risk recurrences benefit more than lower level recurrences from aggressive salvage treatment including ADT. 


In my case my PSA very quickly reached 0.8 before HT was administered bringing it down to 0.1. I still am concerned my PSA was relatively high before commencement of SRT. But happily my PSA remains <0.1. 

Ido4

User
Posted 06 Apr 2023 at 14:48

Originally Posted by: Online Community Member


Short update - PSA now at 0.2, thats doubled (or jumped 0.1, depending on how you look at it) in just four weeks. There was me thinking we were ahead of the game having ‘the chat’ at 0.1 …


ONC saying they don’t see any benefit in pursuing a private PSMA PET scan, but with current 6-10wk wait I’m very concerned at growth in the meantime.


They don’t see next treatment step as urgent; they suspect radiotherapy but need to await scan to ensure this is correct way forward (obviously); and are “hopeful that unless the scan shows cancer away from the prostate bed that we are still hoping to cure you”.


Any thoughts? All seems a bit too relaxed to me, but then I’m on this side.



So sorry to read this Chippers. Wishing you all the best brother.


Jamie

User
Posted 06 Apr 2023 at 15:39

Chippers, given the results of the study Chris highlighted earlier and your rising PSA . Salvage radiotherapy sooner rather than later seems sensible. 

Ido4

User
Posted 17 Apr 2023 at 13:04

Just had a call for private PSMA-PET scan (need to drive Cheshire to Oxford), £2500, 10th May ... after referral around 5th April. Have been told NHS (in Cheshire certainly) is a 2-3 month wait, and privately at The Christie is no faster.


Just keen now to know how significant this recurrence is... every day passing seem like weeks.

 
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