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Possible biochemical recurrence.

User
Posted 08 Aug 2021 at 11:47

 


Hi All


I was 54 when I was diagnosed with PCa. Gleason 8, T3A, PSA of 25.8.


I had a robotic prostatectomy approaching 2 years ago, full nerve sparing on one side and partial on the other,


Prior to my RARP I had a PSMA PET scan which showed that the cancer was mostly contained within the prostate, but breaking out very slightly.


Post-surgery, my PSA dropped to 0.04 and stayed there for a year. However, it has started to rise again fairly sharply and I am now at 0.14.


My next PSA test is in September. My consultant's advice is "wait till you hit 0.2 and get another PET scan". Based upon the trajectory of my PSA readings, I have a hunch that my next result will be approaching the 0.2 level.


I have done some reading, but have seen conflicting information. One article mentioned that with my pre-surgery numbers recurrence is a 95% probability. Another mentioned that because I was quite young at diagnosis there is a higher likelihood of metastasis.


Can anyone suggest a reliable source of information on this please, or otherwise offer some advice?


Many thanks.


 

User
Posted 11 Aug 2021 at 20:22

I am often referred to as an exception by members of the forum.


Diagnosed at 46 with T3a and Gleason 7.  PSA around 7.


Upgraded post radical prostatectomy to T3b and Gleason 9.  Seminal visicle involvement, positive margins, perineural spread.  Non nerve sparing.


Post operative PSA 0.014.  After 1 year, it had progressively risen to 0.023.  Oncogist recommended radiotherapy to the prostate bed.  She planned on a narrow field.  I asked for as wide a field as possible.  She was reluctant.  I also asked for ADT and she was resistant to say the least.


I paid for a PSMA scan.  It showed very small amounts of cancer in two nodes outside the narrow field She proposed but within the limits of the wider field she could treat.  She also agreed to bicalurimide.


I took one tablet per day for three months before 33 days of SRT.  Was on bicalutimide for 18 months in total.


Fatigue was, quite frankly, a challenge.  I put on about 8kg.  My body hair fell out, not ny head hair.  I also took tamoxifen to stop breast growth.


SRT finished 3 years ago, ADT 2 years ago.  My PSA since SRT has been stuck at <0.006.  The lowest they measure at my hospital.  My oncologist said that she would have expected a G9 to have reappeared by now.  She said it could still be there, but if it is it isn't behaving as aggressively as she expected.


Any regrets?  No.  I'm alive.  I'm well.  My daughter graduates next year as a doctor, my son in two years with a business degree.  He'll be the next Lord Sugar or the next Del Boy.  I'll get to both graduations.  I think I'll reach retirement and beyond.  Plenty of reason to think you'll still be running your business for many years.


Remember  oncogists know your case best.  Your PSA is only one factor in deciding when to go for salvage treatment.  But I personally would insist on at least bicalurimide.


I was lucky that my psma scan worked at 0.023.  It may have saved my life.


Finally, don't be afraid to challenge the medics.  Armed with what I'd learned here I am known as the most informed patient they've ever had.  This forum and the people on it are a force for good and a source of patient empowerment.  To all those who helped me to get to this point, alongside the pcuk specialist nurses  a huge thank you.

User
Posted 08 Aug 2021 at 17:17
Yep it’s hard for sure ! None of us know quite what is round the corner. Thing is they didn’t know I had it in lymph’s but 5 of 18 were cancerous , so once it’s in them chances are it will recur at some time somewhere anyway. If sex is your bag like mine , then you could always put it off like I did and let your PSA reach about 3 before a scan to make sure you know what is going on. Or just do as they say and face the SRT issues and the sex loss thing again ? Discuss it with them. My Onco was fine with my choices as long as they were well informed.
As for business etc this cancer seems to progress reasonably slowly with no big surprises until the end , so you have a good few years to make your mind up. As for depression get a councellor if you can afford one. It really helps just to talk to someone neutral. Good luck

If life gives you lemons , then make lemonade
User
Posted 11 Aug 2021 at 14:19

Here is a risk Nomogram for the success of SRT


https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy


 

User
Posted 08 Aug 2021 at 14:27
Hi mate maybe read my profile. I was 48yrs at surgery. My post op results so high and lymph’s positive that they knew I’d have spread and mets so I avoided RT as it was likely in curative. However your results possibly show just cancer cells left around in that area which could be successfully treated with SRT and a cure gained. Did they remove and check local lymph nodes? A scan could show something but normally they would want a bigger PSA to get an accurate scan. Some say that Prostate cancer can be more aggressive in younger men but I’m not sure if the evidence on that one. Your numbers are still so low you needn’t panic unnecessarily ok. My post op psa was 1.5 and then 2.4 three months after. Good luck

If life gives you lemons , then make lemonade
User
Posted 08 Aug 2021 at 17:15

Hi Piers12, it sounds like you are dealing with a biochemical recurrence, official once you reach a PSA of 0.2. I had recurrence around a year after prostatectomy in 2015. My PSA went from <0.1 to 0.3 in 3 months between tests (June to September 2016) and then rapidly to 0.7. Because my PSA doubling time was only 1.2 months I was treated quite aggressively. A choline PET scan was carried out eventually after quite a wait and showed recurrence in a seminal vesicle remnant, an MRI showed recurrence on the prostate bed too. I started hormone therapy towards the end of 2016 and had salvage radiotherapy April 2017 with hormone therapy continuing to April 2019. 
I did a lot of reading about possible metastasis which my oncologist never stopped mentioning and how little time I might have left. Some predictions were horrific but we are all different and no one really knows how long we will survive. I went through some very dark moments, still do from time to time but less so. I still get very nervous before each PSA test. 
Have a read at my profile for more information. 

Edited by member 08 Aug 2021 at 17:23  | Reason: Wrong date entered

Ido4

User
Posted 08 Aug 2021 at 18:35
I get the mental side as you know. Struggled badly over the years. You are wrong about SRT. Yes you can get immediate effects with radiation such as gas and the runs etc , but the longer term effects are ED which is permanent when it arrives ( unlike surgery ) and rectal bleeding and urgency and proctitis. Also possible bladder damage and leakage and stricture. Add to that HT and your desire to have sex ultimately diminishes anyway along with fatigue and weight gain etc. I’m not the expert but if you want to maintain quality of life you have to look at the cancer a different way and take some control. Oncos are duty bound to offer you anything and everything. Thats their job. Even at deaths door they operate on you to try and help which could be pointless. My GPis head of palliative care at a hospice and he totally gets my choices and decisions. It’s not all about survival at any cost

If life gives you lemons , then make lemonade
User
Posted 08 Aug 2021 at 18:40

John had salvage RT with HT - he had no problems during the RT except needing a short afternoon nap some days towards the end - but he was working full time and continued to play rugby and go to the gym as normal. He has had no medium or long term side effects apart from hot flushes sometimes.


That was 10 years ago; his PSA remains at or around 0.1 and most of the time, prostate cancer is just a thing that happened to him in the past. He was 50 at diagnosis.


The thing about your situation is that the T3 makes recurrence in the prostate bed more likely than distant mets, and your PSA (starting below 0.1 post-op and then beginning to increase 1 - 2 years post op) is behaving in a classic way for local recurrence. CJ's PSA was high immediately post-op which is indicative of mets. 

Edited by member 08 Aug 2021 at 18:43  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Aug 2021 at 18:47

Originally Posted by: Online Community Member
I get the mental side as you know. Struggled badly over the years. You are wrong about SRT. Yes you can get immediate effects with radiation such as gas and the runs etc , but the longer term effects are ED which is permanent when it arrives ( unlike surgery ) and rectal bleeding and urgency and proctitis. Also possible bladder damage and leakage and stricture. Add to that HT and your desire to have sex ultimately diminishes anyway along with fatigue and weight gain etc. I’m not the expert but if you want to maintain quality of life you have to look at the cancer a different way and take some control. Oncos are duty bound to offer you anything and everything. Thats their job. Even at deaths door they operate on you to try and help which could be pointless. My GPis head of palliative care at a hospice and he totally gets my choices and decisions. It’s not all about survival at any cost


 


That's a bit unfair CJ - not everyone has these awful side effects developing later as you suggest. ED caused by RT is no more permanent / untreatable than ED after RP. And surgeons do not generally operate on people with cancer at death's door - they have ethical and financial frameworks that would prevent this. 

Edited by member 08 Aug 2021 at 18:48  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Aug 2021 at 18:54

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
John had salvage RT with HT - he had no problems during the RT except needing a short afternoon nap some days towards the end - but he was working full time and continued to play rugby and go to the gym as normal. He has had no medium or long term side effects apart from hot flushes sometimes.

That was 10 years ago; his PSA remains at or around 0.1 and most of the time, prostate cancer is just a thing that happened to him in the past. He was 50 at diagnosis.


I've read conflicting reports about the benefits of ADT alongside SRT. Some would have it that it is unnecessary, others that it significantly improves outcomes.



BAUS and the European Uro-oncology association stats indicate that SRT is most effective if delivered following 3-6 months of HT first to weaken the cancer and then 12-15 months of further HT (18 months in total). More recent data (Stampede trial maybe?) was that the more common 3 years of HT provided no benefit over just 18 months. My understanding is that it is just individual oncologists who may decide on a case by case basis that AHT is unnecessary? 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Aug 2021 at 07:02
My apologies Piers yes a bit unfair on the side-effects of RT but all very possible. However I disagree with Lyn on the ED thing. With surgery if you get some sparing then you can recover from it over time and get EF back using PDE5 tablets like Viagra etc. But with RT the damage happens later after the treatment over a few years and has the effect of burning out both nerves or the ones that were left after previous surgery , leaving you essentially nerve free. From hereon tablets don’t work and you have to switch to injectables for an erection. Lyn has testified after all this time that tablets no longer work for her husband and he is using Invicorp now.

If life gives you lemons , then make lemonade
User
Posted 09 Aug 2021 at 08:53

Originally Posted by: Online Community Member

Lyn

Not sure if you saw my earlier question. Don't say if you'd prefer not to. But I am interested in what ADT did to your chap.

I ask because I am also very physically active and am intrigued as to whether I will be able to hide / deal with hormone therapy if I need to have it.


Sorry. He had bicalutimide - should have been for 9 months but he stopped early because he hated how it made him feel. Bical side effects can be quite different to the SEs from other hormone therapies though. 


There are many members on here who are highly active (particularly cycling / marathon running) and manage to remain competitive during HT. If and when you get to the stage of discussing salvage hormone treatment with the oncologist, there will be plenty of inspiration and advice for you on here! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Aug 2021 at 10:35

Originally Posted by: Online Community Member


I opted for a higher risk and more likely return to normality. Of course, now I may be staring down the barrel of a recurrence I am questioning my decision! 


I think the difficulty is the lack of information and the different opinions of different surgeons. Some appear to prefer a more aggressive surgical approach, and SRT if problems recur. Others prefer to strip out more tissue to reduce the likelihood of SRT.



There is no point in regretting your decision. Whatever you decided it was right for you at the time. You couldn't have predicted the future. The surgeons disagree because they don't know either, and how could they, this is an unpredictable disease.


People on this site just happened to draw the short straw, we got cancer. Some treatment decisions would best be made by the flip of a coin, as at least then no one can regret their choice.


Even though I say we drew the short straw, there were a lot shorter straws to be drawn, if you were born in the third world, you would have probably been dead long before you got the chance to acquire prostate cancer. 

Dave

User
Posted 09 Aug 2021 at 13:16

Originally Posted by: Online Community Member


Quote:


You are wrong Chris - perhaps just showing some of the anti-RT beliefs that you hung onto when you decided to refuse adjuvant treatment. But honestly, think about it - if what you are saying was true, that would mean that every single man on here who has had brachy/IMRT/EBRT has signed up to permanent ED? What rubbish! 





Firstly Piers sorry to hack your thread. Lyn has been an immense help to me over the years and many others and she does it selflessly. But it’s NOT rubbish and I’m not quite sure what she means. Any man that has first line treatment whether it be RP or EBRT or IMRT or Brachy has a 90% chance of permanent ED  ie the ability to achieve natural erections unaided suitable for penetration . Only the extremely lucky recover without the need for pumps and tablets or constriction rings or injections etc. 
I consider myself extremely lucky in the erection recovery department with sexual function on tap , but I still need Cialis and a cheap ring , so I have permanent ED right ? 
Also the same for men who take the HT/RT/Brachy route. ED isn’t as apparent instantly but can set in over years. Normally the whole prostate area is covered by radiation so the nerves get damaged also. And if HT is added as normal that can cause irreversible ED with the need for meds in the future. 
And if you have RP and SRT then there is more likelihood of ED developing or worsening. 
Any man that has Prostate cancer and accepts treatment of any sort is very likely to have permanent ED and will have to rely on physical or medicinal means to achieve an erection 


Good luck with your future discussions , scans and treatment. If there is a cure still hopeful then go for it maybe - I’m learning more and more that the alternative is a frightening thing as it gets nearer. 


If life gives you lemons , then make lemonade
User
Posted 09 Aug 2021 at 14:43
Piers when it was eventually found that I had actual mets in bones and distant lymph nodes last August I was told if I didn’t do anything I would be really ill in 12 months time ( now ! ). I accepted 3 rounds of palliative RT to spine and ribs in September last year and then took the plunge to start HT this February. My Onco said he has patients walk through his door already as advanced as I am , and that the median survival is 3 to 5 yrs. I guess that includes Enza and or Chemo then the last-ditch stuff like Radium 223 etc
I’ve always been an awkward patient re sex-life and fear and QOL and I guess the fact I left it so late ( PSA was 990 AFTER RT ) means that HT may fail more quickly and that those averages don’t count. But no turning back time. I have a young son who is 11 so I want to see him grow up obviously. If I’d started HT 2 yrs ago I may well be in a worse place than I am now and with it failing. Who knows ? I’m a nervous wreck also with cancer on my shoulder day and night , but I’ve put off next PSA till November to reduce the stress load

If life gives you lemons , then make lemonade
User
Posted 10 Aug 2021 at 10:39
Yes, 'prostate specific' is a misnomer - PSA can be measured in breast milk and a woman who has just had an orgasm can have a detectable reading, it is also produced in tiny amounts by the adrenal glands and in breast cancer (both male and female).

A few years ago, MoJ guidance on rape cases had to be changed when it was realised that detectable PSA in swabs was not necessarily reliable forensic evidence of penetration of a body part by a male.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Aug 2021 at 20:25
😂🤥
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2021 at 11:14

Originally Posted by: Online Community Member


The questions that remain in my mind are:


1. Where is the recurrence? Prostate bed? Nearby tissue? Somewhere remote? Is there any way of telling? 



PSAM Pet scan is best way of telling. You had one before the op and it was clear, so to the best of our knowledge you have no distant mets. They may do another one of these, they may need to wait until PSA has increased quite a lot so they know the mets are big enough to show on the scan. Different tracer chemicals can be used, Choline etc. Someone else may know the best tracer, and what level the psa needs to reach before the scan is reliable. 


Originally Posted by: Online Community Member
 


2. If it's the prostate bed, how effective is SRT likely to be?



If there are no mets very likely to be effective. If there are distant mets which were too small to show up on any scan you are back at square one. Do not pass go, do not collect £200.


Originally Posted by: Online Community Member
 


3. If I have to have SRT, how much is actually to be gained from ADT alongside? Experts seem divided.



This is your final role of the dice, throw everything at it including ADT, maybe stop after six months if you find it unbearable. 


Originally Posted by: Online Community Member
 


4. If SRT doesn't sort it, and the problem remains in the prostate bed, can they have another go?



That area of tissue and adjacent regions will have received lifetime limited radiation dose, they won't try again. I don't think any other targeted treatment is possible. 


Originally Posted by: Online Community Member
 


5. I have read many times that distant mets cannot be treated. But I have also heard of some people having them removed. What is the current state of play?



In the last few years it does seem that distant mets can be targeted. I think the technique used is SBRT. Once you have cancer cells in your body which have adapted to spread I think you will have constant recurrence, but I have no evidence for this. 


Originally Posted by: Online Community Member
 


6. If I have distant mets and there is no treatment, is 3 years a reasonably achievable lifespan with ADT? Or is that entirely dependent upon where the mets are? 



Yes at least 3 years. Chris J has managed about 5 years with no treatment, and has only just started ADT now, we wish him many more years. So if you accept the treatment and the reduced quality of life you have a number of years ahead of you, we have a member at 15 years now (I'd say that was exceptional) I would be thinking at least five years. If the mets are in organs rather than bones then things are much worse. 

Dave

User
Posted 11 Aug 2021 at 11:19
Oncologists have years of experience and data to help them determine where a recurrence might be - sometimes they will seek detailed scans to confirm their view, but not always. Generally, if a man has RP and his post-op PSA is above 0.1, that suggests mets further afield. If the post-op PSA is below 0.1, stays there for a while and then starts to climb, that suggests cells left behind in the prostate bed. SRT to the prostate bed or pelvic area tends to be successful for a number of years although the statistical chance of full remission is quite low. Once you have had RT to the pelvic area you can't have sny more although it nay be possible to have something like HIFU for recurrence after RT.

If scans identify just a couple of clear mets away from the prostate bed, some oncologists will offer targeted short course RT to the mets but if the PSA is rising quickly and they suspect more mets than can be seen on the scans, there is little point.

John's post-RP details are very similar to yours. At 0.12 he was referred to oncology and he started the HT at 0.14. Technically, biochemical recurrence is defined as 0.2 or three successive rises above 0.1 or a reading above 0.1 with poor post-op pathology. In practice,your PSA of 0.14 means you have a recurrence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2021 at 12:45

Is there any data on the success or failure of salvage RT, there does seem to be a number of us who have another recurrence after  SRT.


Thanks Chris

User
Posted 11 Aug 2021 at 22:16

The side effects of bicalutamide and zoladex(and the like) are quite different. Bicalutamide can cause breast growth (which can be controlled). I think if you were on zoladex for six months no one would notice, other than a bit of weight gain. 

Dave

User
Posted 16 Aug 2021 at 18:45
Yes, for me fatigue was a big issue us the general lack of strength. Whenever I was on the floor there was no way I could just get up again had to roll over and haul myself up using the couch/chair. It has been said that in general we get over effects of HT in 18 months or so but the effects may last for as long as we were on treatment. The latter certainly seems to be the case with me - I finished Zoladex summer 2018 and, in my opinion, getting over it 'properly' only recently. Doing a lot more now than even a few months ago and weight going down.
Peter
User
Posted 15 Sep 2021 at 17:38

The PSMA PET scan will not show up the cancer cells if there are not enough of them, so you need to wait until the PSA has reached a reasonably high threshold. I believe there are a few types of PSMA PET scan Galium, Choline, maybe others. I don't know which is more sensitive and what the PSA threshold is for each, hopefully Old Barry, or Andy62 will post they can probably remember.


Your pre-op PSA was 25 post op it was 0.04 that means the op removed about 99.84% of the cancer cells. If you post op PSA had been 2.5 we could clearly say 10% of the cancer was left and that would suggest it was in a met somewhere in your body, but in your case only 0.16% of the cancer was left in your body. Now it is an absolute certainty that if you had metastatic cancer at some point exactly 0.16% of the cancer would be metastatic, but I would say there was a higher probability that with a T3 operation that a small amount (0.16%) was left behind at the operation site. Certainly no guarantees, just reasonable probability. 

Dave

User
Posted 19 Sep 2021 at 11:42
John had his RT consultations privately but the actual zapping was on the NHS. It is possible to have RT privately; usually just means you are on the same machines as NHS patients in the same NHS clinic but you get priority for choosing appointments, etc. There are also a small number of private hospitals with their own LINACs.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Sep 2021 at 18:07

 


Colwickchris


As you know, City Hospital can be a PITA to get to and park at. I have also had some pretty poor care there. So I am not massively enthusiastic to go back.


All


With regard to the urologist referring me immediately:


How important is time at this stage? My original cancer was quite aggressive and my PSA was rising quickly. However, it's now rising by about 0.01 / month. Is 6 months or a year really going to have much of an impact upon outcome? I am assuming that my readings are indicative of a fairly small number of cancer cells.


 


 

User
Posted 20 Sep 2021 at 06:14

Private RT is available at the Genesis centre next to BMI The Park Hospital although that's a bit out of the way. I had my RARP up there this summer when City weren't performing surgery.

User
Posted 26 Sep 2021 at 08:27
Is it worth a PSMA scan?
What happens if I do nothing?
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User
Posted 08 Aug 2021 at 14:27
Hi mate maybe read my profile. I was 48yrs at surgery. My post op results so high and lymph’s positive that they knew I’d have spread and mets so I avoided RT as it was likely in curative. However your results possibly show just cancer cells left around in that area which could be successfully treated with SRT and a cure gained. Did they remove and check local lymph nodes? A scan could show something but normally they would want a bigger PSA to get an accurate scan. Some say that Prostate cancer can be more aggressive in younger men but I’m not sure if the evidence on that one. Your numbers are still so low you needn’t panic unnecessarily ok. My post op psa was 1.5 and then 2.4 three months after. Good luck

If life gives you lemons , then make lemonade
User
Posted 08 Aug 2021 at 16:35

The surgeon left the lymph nodes alone. The reason being he was using frozen section technology and was confident that they weren't involved, also apparently there is increased risk with lymph node removal.

I was given the choice of more aggressive surgery and greater chance of no recurrence, or a less invasive approach with a greater probability of retaining a normal sex life. I chose the sex.

Your story is quite something. You seem to have outlived early predictions. I am sure your positive mental attitude is a great help.

Whilst my problems are nothing when compared to yours, I am struggling with it a bit at the moment. I run my own businesses and at present I don't know what "planning for the future" actually means. Am I planning 3, 5, 10 or more years ahead? I cannot leave the businesses for my family to run, so if things turn out badly I am going to have to engage in some swift unwinding of business interests, just when I don't want to be doing that sort of thing.



User
Posted 08 Aug 2021 at 17:15

Hi Piers12, it sounds like you are dealing with a biochemical recurrence, official once you reach a PSA of 0.2. I had recurrence around a year after prostatectomy in 2015. My PSA went from <0.1 to 0.3 in 3 months between tests (June to September 2016) and then rapidly to 0.7. Because my PSA doubling time was only 1.2 months I was treated quite aggressively. A choline PET scan was carried out eventually after quite a wait and showed recurrence in a seminal vesicle remnant, an MRI showed recurrence on the prostate bed too. I started hormone therapy towards the end of 2016 and had salvage radiotherapy April 2017 with hormone therapy continuing to April 2019. 
I did a lot of reading about possible metastasis which my oncologist never stopped mentioning and how little time I might have left. Some predictions were horrific but we are all different and no one really knows how long we will survive. I went through some very dark moments, still do from time to time but less so. I still get very nervous before each PSA test. 
Have a read at my profile for more information. 

Edited by member 08 Aug 2021 at 17:23  | Reason: Wrong date entered

Ido4

User
Posted 08 Aug 2021 at 17:17
Yep it’s hard for sure ! None of us know quite what is round the corner. Thing is they didn’t know I had it in lymph’s but 5 of 18 were cancerous , so once it’s in them chances are it will recur at some time somewhere anyway. If sex is your bag like mine , then you could always put it off like I did and let your PSA reach about 3 before a scan to make sure you know what is going on. Or just do as they say and face the SRT issues and the sex loss thing again ? Discuss it with them. My Onco was fine with my choices as long as they were well informed.
As for business etc this cancer seems to progress reasonably slowly with no big surprises until the end , so you have a good few years to make your mind up. As for depression get a councellor if you can afford one. It really helps just to talk to someone neutral. Good luck

If life gives you lemons , then make lemonade
User
Posted 08 Aug 2021 at 17:26

Looking ahead: I gather that SRT can cause ED and gut problems, but they will diminish over time leaving the patient with what they had previously. Can anyone confirm this?

I really am not keen on the idea of ADT with SRT due to the side effects of that.

I might be overstating the mental side. I was fine until I had COVID for a month, followed by a week of gut infection. It may be that those problems took the mental stuffing out of me.

User
Posted 08 Aug 2021 at 18:35
I get the mental side as you know. Struggled badly over the years. You are wrong about SRT. Yes you can get immediate effects with radiation such as gas and the runs etc , but the longer term effects are ED which is permanent when it arrives ( unlike surgery ) and rectal bleeding and urgency and proctitis. Also possible bladder damage and leakage and stricture. Add to that HT and your desire to have sex ultimately diminishes anyway along with fatigue and weight gain etc. I’m not the expert but if you want to maintain quality of life you have to look at the cancer a different way and take some control. Oncos are duty bound to offer you anything and everything. Thats their job. Even at deaths door they operate on you to try and help which could be pointless. My GPis head of palliative care at a hospice and he totally gets my choices and decisions. It’s not all about survival at any cost

If life gives you lemons , then make lemonade
User
Posted 08 Aug 2021 at 18:40

John had salvage RT with HT - he had no problems during the RT except needing a short afternoon nap some days towards the end - but he was working full time and continued to play rugby and go to the gym as normal. He has had no medium or long term side effects apart from hot flushes sometimes.


That was 10 years ago; his PSA remains at or around 0.1 and most of the time, prostate cancer is just a thing that happened to him in the past. He was 50 at diagnosis.


The thing about your situation is that the T3 makes recurrence in the prostate bed more likely than distant mets, and your PSA (starting below 0.1 post-op and then beginning to increase 1 - 2 years post op) is behaving in a classic way for local recurrence. CJ's PSA was high immediately post-op which is indicative of mets. 

Edited by member 08 Aug 2021 at 18:43  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Aug 2021 at 18:44

Originally Posted by: Online Community Member
John had salvage RT with HT - he had no problems during the RT except needing a short afternoon nap some days towards the end - but he was working full time and continued to play rugby and go to the gym as normal. He has had no medium or long term side effects apart from hot flushes sometimes.

That was 10 years ago; his PSA remains at or around 0.1 and most of the time, prostate cancer is just a thing that happened to him in the past. He was 50 at diagnosis.


I've read conflicting reports about the benefits of ADT alongside SRT. Some would have it that it is unnecessary, others that it significantly improves outcomes.

User
Posted 08 Aug 2021 at 18:47

Originally Posted by: Online Community Member
I get the mental side as you know. Struggled badly over the years. You are wrong about SRT. Yes you can get immediate effects with radiation such as gas and the runs etc , but the longer term effects are ED which is permanent when it arrives ( unlike surgery ) and rectal bleeding and urgency and proctitis. Also possible bladder damage and leakage and stricture. Add to that HT and your desire to have sex ultimately diminishes anyway along with fatigue and weight gain etc. I’m not the expert but if you want to maintain quality of life you have to look at the cancer a different way and take some control. Oncos are duty bound to offer you anything and everything. Thats their job. Even at deaths door they operate on you to try and help which could be pointless. My GPis head of palliative care at a hospice and he totally gets my choices and decisions. It’s not all about survival at any cost


 


That's a bit unfair CJ - not everyone has these awful side effects developing later as you suggest. ED caused by RT is no more permanent / untreatable than ED after RP. And surgeons do not generally operate on people with cancer at death's door - they have ethical and financial frameworks that would prevent this. 

Edited by member 08 Aug 2021 at 18:48  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Aug 2021 at 18:54

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
John had salvage RT with HT - he had no problems during the RT except needing a short afternoon nap some days towards the end - but he was working full time and continued to play rugby and go to the gym as normal. He has had no medium or long term side effects apart from hot flushes sometimes.

That was 10 years ago; his PSA remains at or around 0.1 and most of the time, prostate cancer is just a thing that happened to him in the past. He was 50 at diagnosis.


I've read conflicting reports about the benefits of ADT alongside SRT. Some would have it that it is unnecessary, others that it significantly improves outcomes.



BAUS and the European Uro-oncology association stats indicate that SRT is most effective if delivered following 3-6 months of HT first to weaken the cancer and then 12-15 months of further HT (18 months in total). More recent data (Stampede trial maybe?) was that the more common 3 years of HT provided no benefit over just 18 months. My understanding is that it is just individual oncologists who may decide on a case by case basis that AHT is unnecessary? 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Aug 2021 at 19:15

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
John had salvage RT with HT - he had no problems during the RT except needing a short afternoon nap some days towards the end - but he was working full time and continued to play rugby and go to the gym as normal. He has had no medium or long term side effects apart from hot flushes sometimes.

That was 10 years ago; his PSA remains at or around 0.1 and most of the time, prostate cancer is just a thing that happened to him in the past. He was 50 at diagnosis.


I've read conflicting reports about the benefits of ADT alongside SRT. Some would have it that it is unnecessary, others that it significantly improves outcomes.



BAUS and the European Uro-oncology association stats indicate that SRT is most effective if delivered following 3-6 months of HT first to weaken the cancer and then 12-15 months of further HT (18 months in total). More recent data (Stampede trial maybe?) was that the more common 3 years of HT provided no benefit over just 18 months. My understanding is that it is just individual oncologists who may decide on a case by case basis that AHT is unnecessary? 



 


Can I ask what ADT did to John?


The reason I ask is twofold. Firstly, I have so far managed to keep my cancer journey from my children. They don't know I've had cancer, they don't know that I nearly died of sepsis following my biopsy and they don't know about my RP. I want to leave it as long as possible before they are told. Ideally until they are adults!


Secondly I am a vain individual and I don't want the side effects of ADT to spoil my unquestionable beauty. ;-)


 


 

User
Posted 09 Aug 2021 at 07:02
My apologies Piers yes a bit unfair on the side-effects of RT but all very possible. However I disagree with Lyn on the ED thing. With surgery if you get some sparing then you can recover from it over time and get EF back using PDE5 tablets like Viagra etc. But with RT the damage happens later after the treatment over a few years and has the effect of burning out both nerves or the ones that were left after previous surgery , leaving you essentially nerve free. From hereon tablets don’t work and you have to switch to injectables for an erection. Lyn has testified after all this time that tablets no longer work for her husband and he is using Invicorp now.

If life gives you lemons , then make lemonade
User
Posted 09 Aug 2021 at 08:10

Originally Posted by: Online Community Member
My apologies Piers yes a bit unfair on the side-effects of RT but all very possible. However I disagree with Lyn on the ED thing. With surgery if you get some sparing then you can recover from it over time and get EF back using PDE5 tablets like Viagra etc. But with RT the damage happens later after the treatment over a few years and has the effect of burning out both nerves or the ones that were left after previous surgery , leaving you essentially nerve free. From hereon tablets don’t work and you have to switch to injectables for an erection. Lyn has testified after all this time that tablets no longer work for her husband and he is using Invicorp now.


I've heard that ED issues can occur after time, post-SRT. However I have also read that EF will return. The consultant who did my RP said that function USUALLY returns to what you had pre-SRT, but halts any post-surgery improvement.


Edited to add: After 2 years I have a pretty normal sex life, but use a constriction band. PDE5 also works, but I don't like the feeling of having a cold for the remainder of the day.


I am nearly 56 now and hoped to be sexually active for a few more years yet. But injectables give me the heeby jeebies, if I am honest. 


 


 


 


 

Edited by member 09 Aug 2021 at 08:23  | Reason: Add more info.

User
Posted 09 Aug 2021 at 08:30

Originally Posted by: Online Community Member
But with RT the damage happens later after the treatment over a few years and has the effect of burning out both nerves or the ones that were left after previous surgery , leaving you essentially nerve free. From hereon tablets don’t work and you have to switch to injectables for an erection.


You are wrong Chris - perhaps just showing some of the anti-RT beliefs that you hung onto when you decided to refuse adjuvant treatment. But honestly, think about it - if what you are saying was true, that would mean that every single man on here who has had brachy/IMRT/EBRT has signed up to permanent ED? What rubbish! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Aug 2021 at 08:41

Lyn

Not sure if you saw my earlier question. Don't say if you'd prefer not to. But I am interested in what ADT did to your chap.

I ask because I am also very physically active and am intrigued as to whether I will be able to hide / deal with hormone therapy if I need to have it.

User
Posted 09 Aug 2021 at 08:42

Originally Posted by: Online Community Member
Lyn has testified after all this time that tablets no longer work for her husband and he is using Invicorp now.


Lyn has testified no such thing! I have posted many times that John fully recovered his erectile function on a mechanical level but has been left with psychological/ emotional ED. A couple of years ago I thought we might be seeing the start of some RT damage but that seems to have resolved itself. He still uses Levitra or Viagra, sometimes uses Invicorp instead and sometimes (if I surprise him or he hasn't had time to worry about it) his natural erection is just fine 😊

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Aug 2021 at 08:53

Originally Posted by: Online Community Member

Lyn

Not sure if you saw my earlier question. Don't say if you'd prefer not to. But I am interested in what ADT did to your chap.

I ask because I am also very physically active and am intrigued as to whether I will be able to hide / deal with hormone therapy if I need to have it.


Sorry. He had bicalutimide - should have been for 9 months but he stopped early because he hated how it made him feel. Bical side effects can be quite different to the SEs from other hormone therapies though. 


There are many members on here who are highly active (particularly cycling / marathon running) and manage to remain competitive during HT. If and when you get to the stage of discussing salvage hormone treatment with the oncologist, there will be plenty of inspiration and advice for you on here! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Aug 2021 at 09:08

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member

Lyn

Not sure if you saw my earlier question. Don't say if you'd prefer not to. But I am interested in what ADT did to your chap.

I ask because I am also very physically active and am intrigued as to whether I will be able to hide / deal with hormone therapy if I need to have it.


Sorry. He had bicalutimide - should have been for 9 months but he stopped early because he hated how it made him feel. Bical side effects can be quite different to the SEs from other hormone therapies though. 


There are many members on here who are highly active (particularly cycling / marathon running) and manage to remain competitive during HT. If and when you get to the stage of discussing salvage hormone treatment with the oncologist, there will be plenty of inspiration and advice for you on here! 



Ah, great, thanks.


As I mentioned earlier in the thread, the surgeon gave me a choice between more aggressive surgery and higher probability of ED or more sparing and higher risk of recurrence.


I opted for a higher risk and more likely return to normality. Of course, now I may be staring down the barrel of a recurrence I am questioning my decision! 


I think the difficulty is the lack of information and the different opinions of different surgeons. Some appear to prefer a more aggressive surgical approach, and SRT if problems recur. Others prefer to strip out more tissue to reduce the likelihood of SRT.

User
Posted 09 Aug 2021 at 10:35

Originally Posted by: Online Community Member


I opted for a higher risk and more likely return to normality. Of course, now I may be staring down the barrel of a recurrence I am questioning my decision! 


I think the difficulty is the lack of information and the different opinions of different surgeons. Some appear to prefer a more aggressive surgical approach, and SRT if problems recur. Others prefer to strip out more tissue to reduce the likelihood of SRT.



There is no point in regretting your decision. Whatever you decided it was right for you at the time. You couldn't have predicted the future. The surgeons disagree because they don't know either, and how could they, this is an unpredictable disease.


People on this site just happened to draw the short straw, we got cancer. Some treatment decisions would best be made by the flip of a coin, as at least then no one can regret their choice.


Even though I say we drew the short straw, there were a lot shorter straws to be drawn, if you were born in the third world, you would have probably been dead long before you got the chance to acquire prostate cancer. 

Dave

User
Posted 09 Aug 2021 at 12:54

Thanks for your advice, everyone.

As many of you know, having what appears to be a biochemical recurrence is at best disappointing. My surgeon seemed quite confident that he had got it all and now that it appears he didn't it reopens a can of worms.

This appears to be a good site with unbiased experience and opinions. I think there is a tendency amongst medics to do a bit too much self-promotion. As a surgeon once said to me "the main difference between God and a medic is that God knows he isn't a medic".

User
Posted 09 Aug 2021 at 13:03

Originally Posted by: Online Community Member

As a surgeon once said to me "the main difference between God and a medic is that God knows he isn't a medic".


Sounds like the kind of egotistical surgeon I'd prefer to avoid. My surgeon was a Christian, which made me very happy. 

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 09 Aug 2021 at 13:07

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member

As a surgeon once said to me "the main difference between God and a medic is that God knows he isn't a medic".


Sounds like the kind of egotistical surgeon I'd prefer to avoid. My surgeon was a Christian, which made me very happy. 



 


The opposite I would have thought, the comment was self-effacing.


I must be honest, I don't much care what religion my surgeon pursues, so long as he is the best person for the job technically.


 


 


 

Edited by member 09 Aug 2021 at 13:12  | Reason: Spelling

User
Posted 09 Aug 2021 at 13:16

Originally Posted by: Online Community Member


Quote:


You are wrong Chris - perhaps just showing some of the anti-RT beliefs that you hung onto when you decided to refuse adjuvant treatment. But honestly, think about it - if what you are saying was true, that would mean that every single man on here who has had brachy/IMRT/EBRT has signed up to permanent ED? What rubbish! 





Firstly Piers sorry to hack your thread. Lyn has been an immense help to me over the years and many others and she does it selflessly. But it’s NOT rubbish and I’m not quite sure what she means. Any man that has first line treatment whether it be RP or EBRT or IMRT or Brachy has a 90% chance of permanent ED  ie the ability to achieve natural erections unaided suitable for penetration . Only the extremely lucky recover without the need for pumps and tablets or constriction rings or injections etc. 
I consider myself extremely lucky in the erection recovery department with sexual function on tap , but I still need Cialis and a cheap ring , so I have permanent ED right ? 
Also the same for men who take the HT/RT/Brachy route. ED isn’t as apparent instantly but can set in over years. Normally the whole prostate area is covered by radiation so the nerves get damaged also. And if HT is added as normal that can cause irreversible ED with the need for meds in the future. 
And if you have RP and SRT then there is more likelihood of ED developing or worsening. 
Any man that has Prostate cancer and accepts treatment of any sort is very likely to have permanent ED and will have to rely on physical or medicinal means to achieve an erection 


Good luck with your future discussions , scans and treatment. If there is a cure still hopeful then go for it maybe - I’m learning more and more that the alternative is a frightening thing as it gets nearer. 


If life gives you lemons , then make lemonade
User
Posted 09 Aug 2021 at 13:56

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Quote:


You are wrong Chris - perhaps just showing some of the anti-RT beliefs that you hung onto when you decided to refuse adjuvant treatment. But honestly, think about it - if what you are saying was true, that would mean that every single man on here who has had brachy/IMRT/EBRT has signed up to permanent ED? What rubbish! 





Firstly Piers sorry to hack your thread. Lyn has been an immense help to me over the years and many others and she does it selflessly. But it’s NOT rubbish and I’m not quite sure what she means. Any man that has first line treatment whether it be RP or EBRT or IMRT or Brachy has a 90% chance of permanent ED  ie the ability to achieve natural erections unaided suitable for penetration . Only the extremely lucky recover without the need for pumps and tablets or constriction rings or injections etc. 
I consider myself extremely lucky in the erection recovery department with sexual function on tap , but I still need Cialis and a cheap ring , so I have permanent ED right ? 
Also the same for men who take the HT/RT/Brachy route. ED isn’t as apparent instantly but can set in over years. Normally the whole prostate area is covered by radiation so the nerves get damaged also. And if HT is added as normal that can cause irreversible ED with the need for meds in the future. 
And if you have RP and SRT then there is more likelihood of ED developing or worsening. 
Any man that has Prostate cancer and accepts treatment of any sort is very likely to have permanent ED and will have to rely on physical or medicinal means to achieve an erection 


Good luck with your future discussions , scans and treatment. If there is a cure still hopeful then go for it maybe - I’m learning more and more that the alternative is a frightening thing as it gets nearer. 



 


Chris


I admire your courage.


When I was first diagnosed with PCa I considered not having it treated. But a surgeon in London said that my cancer was aggressive and that I may have 6 months of natural erections left, with a risk of significant disease progression in that time. I have a young family and my sense of responsibility to them was mainly what drove my decision to have the RP.


If I can hang around long enough to send my children to Uni I will be happy. My direct influence upon them will end at that point naturally.


Would I like to see my grandchildren? Of course, but it is not essential. Also, an early PCa death may avoid a raft of other unpleasant age-related issues!


ED: I guess you're correct. If you need any sort of "help" I suppose that is ED. I am currently quite happy with what I have. I had no loss of dimensions and with a ring I am 90% as firm I was before. The surgeon said he thought that after 3 years I would not require help.


That was when he thought I wouldn't need SRT however.


He has been upbeat all the way through, but when I started with a PSA rise he said "not surprised given your data" which suggested that he wasn't QUITE as sure about a cure as he'd let on.


Do you have a current idea of how long you have? I seem to recall that you're already over early predictions. I hope that is not too insensitive a question.

User
Posted 09 Aug 2021 at 14:26
There is no certainty about side effects after any treatment but as a generalisation as regards surgery and ED, it seems this is more of a problem early on but with perseverance and mechanical/chemical aides many men gradually have improved function over time. With RT, the effect of which is made worse with HT, function often deteriorates over time. This was also my experience, although I did not try any of the artificial means of argumentation. However, there are exceptions to this. One of these was a member called 'Athalays', who despite having RT and HT still had a very full sex life.

So, I agree with the comment that neither consultants nor patients know for certain the way things will work out. Certainly, many men live beyond the time they suggest a patient may live. Advances in treatment, follow up and additional and new treatment can also help in this respect.
Barry
User
Posted 09 Aug 2021 at 14:43
Piers when it was eventually found that I had actual mets in bones and distant lymph nodes last August I was told if I didn’t do anything I would be really ill in 12 months time ( now ! ). I accepted 3 rounds of palliative RT to spine and ribs in September last year and then took the plunge to start HT this February. My Onco said he has patients walk through his door already as advanced as I am , and that the median survival is 3 to 5 yrs. I guess that includes Enza and or Chemo then the last-ditch stuff like Radium 223 etc
I’ve always been an awkward patient re sex-life and fear and QOL and I guess the fact I left it so late ( PSA was 990 AFTER RT ) means that HT may fail more quickly and that those averages don’t count. But no turning back time. I have a young son who is 11 so I want to see him grow up obviously. If I’d started HT 2 yrs ago I may well be in a worse place than I am now and with it failing. Who knows ? I’m a nervous wreck also with cancer on my shoulder day and night , but I’ve put off next PSA till November to reduce the stress load

If life gives you lemons , then make lemonade
User
Posted 09 Aug 2021 at 15:13

Originally Posted by: Online Community Member
Piers when it was eventually found that I had actual mets in bones and distant lymph nodes last August I was told if I didn’t do anything I would be really ill in 12 months time ( now ! ). I accepted 3 rounds of palliative RT to spine and ribs in September last year and then took the plunge to start HT this February. My Onco said he has patients walk through his door already as advanced as I am , and that the median survival is 3 to 5 yrs. I guess that includes Enza and or Chemo then the last-ditch stuff like Radium 223 etc
I’ve always been an awkward patient re sex-life and fear and QOL and I guess the fact I left it so late ( PSA was 990 AFTER RT ) means that HT may fail more quickly and that those averages don’t count. But no turning back time. I have a young son who is 11 so I want to see him grow up obviously. If I’d started HT 2 yrs ago I may well be in a worse place than I am now and with it failing. Who knows ? I’m a nervous wreck also with cancer on my shoulder day and night , but I’ve put off next PSA till November to reduce the stress load


I have teenage children who, as I mentioned, know nothing of my condition. I don't want them to worry and instead enjoy their time as children. Once they have left home they will take the news better I think, if I am not cured. I hope that they would miss me if I were not around (and the minute I start believing otherwise I will spend their inheritance!) but it will be easier for them if they have left home and I am not "dad" in the day-to-day sense.


Only my wife, her parents and my brother know. My parents in law know because my wife needed their support. My brother only knows because I had a duty of care to tell him, in case he is similarly affected. It's strictly on a need to know basis.


It seems that you are struggling mentally, do you have professional help for that?


 


 

Edited by member 09 Aug 2021 at 15:15  | Reason: Not specified

User
Posted 09 Aug 2021 at 15:18
I had a regular councellor for 2 yrs but she dropped me during the first lockdown. I think she may have had something happen in her own life. I now get monthly councelling from the hospice I am already registered with for when the time comes ….

If life gives you lemons , then make lemonade
User
Posted 09 Aug 2021 at 15:43

Originally Posted by: Online Community Member
I had a regular councellor for 2 yrs but she dropped me during the first lockdown. I think she may have had something happen in her own life. I now get monthly councelling from the hospice I am already registered with for when the time comes ….


 


That sounds inadequate. Have you asked your GP for more help?

User
Posted 09 Aug 2021 at 19:10

Originally Posted by: Online Community Member


Firstly Piers sorry to hack your thread. Lyn has been an immense help to me over the years and many others and she does it selflessly. But it’s NOT rubbish and I’m not quite sure what she means. Any man that has first line treatment whether it be RP or EBRT or IMRT or Brachy has a 90% chance of permanent ED  ie the ability to achieve natural erections unaided suitable for penetration . Only the extremely lucky recover without the need for pumps and tablets or constriction rings or injections etc. 



I'm pretty sure I was told it was about 45% chance of ED for RARP with nerve sparing. With your 90% do you mean with non-nerve sparing surgery? I'll see if I can find my source. 


Edit to add source:

Online Community Member wrote:


As far as erections are concerned I explained that it would be reasonable to perform a unilateral on the right nerve-sparing procedure which will give him up to 50% chance of recovering spontaneously erections and this may take up to two years to be fully realised...


Edited by member 09 Aug 2021 at 19:18  | Reason: Not specified

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 09 Aug 2021 at 19:22

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Firstly Piers sorry to hack your thread. Lyn has been an immense help to me over the years and many others and she does it selflessly. But it’s NOT rubbish and I’m not quite sure what she means. Any man that has first line treatment whether it be RP or EBRT or IMRT or Brachy has a 90% chance of permanent ED  ie the ability to achieve natural erections unaided suitable for penetration . Only the extremely lucky recover without the need for pumps and tablets or constriction rings or injections etc. 



I'm pretty sure I was told it was about 45% chance of ED for RARP with nerve sparing. With your 90% do you mean with non-nerve sparing surgery? I'll see if I can find my source. 


Edit to add source:

Online Community Member wrote:


As far as erections are concerned I explained that it would be reasonable to perform a unilateral on the right nerve-sparing procedure which will give him up to 50% chance of recovering spontaneously erections and this may take up to two years to be fully realised...




I was quoted 60% chance of retaining EF, assuming nerve sparing on one side and use of a PDE5.


In the end I had full nerve sparing on one side and 60% on the other, but still need "help" to get a viable erection after 2 years. The choice of help is usually a band, but pills work too.


An aside: My surgeon recommended a vacuum pump for use immediately after catheter removal and ongoing. It wasn't wholly effective because I got a good erection but with a flexible base. It did however ensure that I did not experience shrinkage.


 


 

Edited by member 09 Aug 2021 at 19:25  | Reason: Not specified

User
Posted 09 Aug 2021 at 22:37


My Histology was T3a, G4+3 pre op PSA was 10. My bio lists the slow PSA progression.  About three years post surgery my PSA went over 0.2, there was lots of talk on here about having one of the more sensitive scans, my oncologist refused saying they were for the future. When I asked about SRT to the prostate bed without evidence, he said it was a very educated guess based on years of experience. After SRT my PSA dropped from 0.27 to 0.08 then to 0.04 Did that mean there was some cells outside the bed or they didn't get all of the cells in the prostate bed.


After the drop to 0.04 it has steadily risen over the last four years to around 0.63.


The salvage RT didn't do me any favours, but the adverse effects I have only happen to around 5-10 percent of guys receiving SRT, something I was only told six months ago. My surgeon did have numerous excursions into my urethera and bladder. I do cope with the adverse effects and I am still here. I didn't have HT with my SRT.


Good that you are getting one of the better type scans. I was told that if cells were found outside the prostate bed SRT would not happen and I would only get HT. Things have progressed in the last few years and I have seen where guys get local treatment to a few areas if detected outside the pelvic area.


I was supposedly non nerve sparing but even seven years on I get the odd surprise.


Thanks Chris


 

User
Posted 10 Aug 2021 at 06:59

Originally Posted by: Online Community Member



My Histology was T3a, G4+3 pre op PSA was 10. My bio lists the slow PSA progression.  About three years post surgery my PSA went over 0.2, there was lots of talk on here about having one of the more sensitive scans, my oncologist refused saying they were for the future. When I asked about SRT to the prostate bed without evidence, he said it was a very educated guess based on years of experience. After SRT my PSA dropped from 0.27 to 0.08 then to 0.04 Did that mean there was some cells outside the bed or they didn't get all of the cells in the prostate bed.


After the drop to 0.04 it has steadily risen over the last four years to around 0.63.


The salvage RT didn't do me any favours, but the adverse effects I have only happen to around 5-10 percent of guys receiving SRT, something I was only told six months ago. My surgeon did have numerous excursions into my urethera and bladder. I do cope with the adverse effects and I am still here. I didn't have HT with my SRT.


Good that you are getting one of the better type scans. I was told that if cells were found outside the prostate bed SRT would not happen and I would only get HT. Things have progressed in the last few years and I have seen where guys get local treatment to a few areas if detected outside the pelvic area.


I was supposedly non nerve sparing but even seven years on I get the odd surprise.


Thanks Chris


 



 


Your PSA not dropping to zero is normal I gather. There are other organs that generate a small amount of PSA - the breasts for example.


Was it City hospital Nottingham where you had your work done?


 


 

User
Posted 10 Aug 2021 at 08:13


I don't think many of us would ever get a zero reading.  Standard  hospital testing doesn't go that low. A less than 0.001 is probably the best you would see in the hospital environment. 


The PSA from other organs is in Lyn's domain, I think the PSA was detected in breast milk, not sure it was in male breasts.


Yes City hospital, are you there ?


Thanks Chris


 

User
Posted 10 Aug 2021 at 08:30

Originally Posted by: Online Community Member



I don't think many of us would ever get a zero reading.  Standard  hospital testing doesn't go that low. A less than 0.001 is probably the best you would see in the hospital environment. 


The PSA from other organs is in Lyn's domain, I think the PSA was detected in breast milk, not sure it was in male breasts.


Yes City hospital, are you there ?


Thanks Chris


 



According to my consultant, male breasts, the prostate stump and other organs produce PSA at a level reflected by my post-surgery 0.04 readings (for a year or so).


City - No, I am not there. I was misdiagnosed there initially and went back there a couple of times. Your experience chimes with my own. I very much hope not to return there.


 


 


 


 


 


 

User
Posted 10 Aug 2021 at 10:39
Yes, 'prostate specific' is a misnomer - PSA can be measured in breast milk and a woman who has just had an orgasm can have a detectable reading, it is also produced in tiny amounts by the adrenal glands and in breast cancer (both male and female).

A few years ago, MoJ guidance on rape cases had to be changed when it was realised that detectable PSA in swabs was not necessarily reliable forensic evidence of penetration of a body part by a male.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Aug 2021 at 13:48

Originally Posted by: Online Community Member
PSA can be measured in breast milk and a woman who has just had an orgasm can have a detectable reading,  


Hah, but can she fake a PSA reading? ;-)


 


 


 


 


 


 

User
Posted 10 Aug 2021 at 20:25
😂🤥
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2021 at 10:09

 


Okay, this has been a very interesting thread and it has helped me get a better grasp of what is or may be going on. Thank you all.


To recap, and assist me with getting my head straight about this:


I was diagnosed with T3a, Gleason 8, PSA 26 at age 54.


PSMA PET scan showed no mets.


I had a RARP, negative margin, no lymph node involvement. I retained full nerves on one side and some on the other.


My PSA results have been:


0.04


0.04


0.04


0.05


0.08


0.14


So it appears that I am experiencing a biochemical recurrence, probably, and that will be made official at 0.2.


The questions that remain in my mind are:


1. Where is the recurrence? Prostate bed? Nearby tissue? Somewhere remote? Is there any way of telling?


2. If it's the prostate bed, how effective is SRT likely to be?


3. If I have to have SRT, how much is actually to be gained from ADT alongside? Experts seem divided.


4. If SRT doesn't sort it, and the problem remains in the prostate bed, can they have another go?


5. I have read many times that distant mets cannot be treated. But I have also heard of some people having them removed. What is the current state of play?


6. If I have distant mets and there is no treatment, is 3 years a reasonably achievable lifespan with ADT? Or is that entirely dependent upon where the mets are?


 


 


 

User
Posted 11 Aug 2021 at 11:14

Originally Posted by: Online Community Member


The questions that remain in my mind are:


1. Where is the recurrence? Prostate bed? Nearby tissue? Somewhere remote? Is there any way of telling? 



PSAM Pet scan is best way of telling. You had one before the op and it was clear, so to the best of our knowledge you have no distant mets. They may do another one of these, they may need to wait until PSA has increased quite a lot so they know the mets are big enough to show on the scan. Different tracer chemicals can be used, Choline etc. Someone else may know the best tracer, and what level the psa needs to reach before the scan is reliable. 


Originally Posted by: Online Community Member
 


2. If it's the prostate bed, how effective is SRT likely to be?



If there are no mets very likely to be effective. If there are distant mets which were too small to show up on any scan you are back at square one. Do not pass go, do not collect £200.


Originally Posted by: Online Community Member
 


3. If I have to have SRT, how much is actually to be gained from ADT alongside? Experts seem divided.



This is your final role of the dice, throw everything at it including ADT, maybe stop after six months if you find it unbearable. 


Originally Posted by: Online Community Member
 


4. If SRT doesn't sort it, and the problem remains in the prostate bed, can they have another go?



That area of tissue and adjacent regions will have received lifetime limited radiation dose, they won't try again. I don't think any other targeted treatment is possible. 


Originally Posted by: Online Community Member
 


5. I have read many times that distant mets cannot be treated. But I have also heard of some people having them removed. What is the current state of play?



In the last few years it does seem that distant mets can be targeted. I think the technique used is SBRT. Once you have cancer cells in your body which have adapted to spread I think you will have constant recurrence, but I have no evidence for this. 


Originally Posted by: Online Community Member
 


6. If I have distant mets and there is no treatment, is 3 years a reasonably achievable lifespan with ADT? Or is that entirely dependent upon where the mets are? 



Yes at least 3 years. Chris J has managed about 5 years with no treatment, and has only just started ADT now, we wish him many more years. So if you accept the treatment and the reduced quality of life you have a number of years ahead of you, we have a member at 15 years now (I'd say that was exceptional) I would be thinking at least five years. If the mets are in organs rather than bones then things are much worse. 

Dave

User
Posted 11 Aug 2021 at 11:19
Oncologists have years of experience and data to help them determine where a recurrence might be - sometimes they will seek detailed scans to confirm their view, but not always. Generally, if a man has RP and his post-op PSA is above 0.1, that suggests mets further afield. If the post-op PSA is below 0.1, stays there for a while and then starts to climb, that suggests cells left behind in the prostate bed. SRT to the prostate bed or pelvic area tends to be successful for a number of years although the statistical chance of full remission is quite low. Once you have had RT to the pelvic area you can't have sny more although it nay be possible to have something like HIFU for recurrence after RT.

If scans identify just a couple of clear mets away from the prostate bed, some oncologists will offer targeted short course RT to the mets but if the PSA is rising quickly and they suspect more mets than can be seen on the scans, there is little point.

John's post-RP details are very similar to yours. At 0.12 he was referred to oncology and he started the HT at 0.14. Technically, biochemical recurrence is defined as 0.2 or three successive rises above 0.1 or a reading above 0.1 with poor post-op pathology. In practice,your PSA of 0.14 means you have a recurrence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2021 at 12:45

Is there any data on the success or failure of salvage RT, there does seem to be a number of us who have another recurrence after  SRT.


Thanks Chris

User
Posted 11 Aug 2021 at 13:32

Originally Posted by: Online Community Member


Is there any data on the success or failure of salvage RT, there does seem to be a number of us who have another recurrence after  SRT.


Thanks Chris



I have read 50%

User
Posted 11 Aug 2021 at 14:19

Here is a risk Nomogram for the success of SRT


https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy


 

User
Posted 11 Aug 2021 at 16:22


 


Assuming I have the right data, I have a 75% chance of no progression after 6 years.

User
Posted 11 Aug 2021 at 16:25

Originally Posted by: Online Community Member
SRT to the prostate bed or pelvic area tends to be successful for a number of years although the statistical chance of full remission is quite low.


Do you have a link for stats please?


This thread is increasingly making me think that dealing with PCa will be a new hobby for my old age. I had considered golf, but you have to keep an open mind don't you!

User
Posted 11 Aug 2021 at 16:44

Originally Posted by: Online Community Member



 


Assuming I have the right data, I have a 75% chance of no progression after 6 years.



P


Assuming I have entered the right data I should have had a 68 % chance of no progression for six years.  In reality my PSA hit 0.22 26 months after SRT . If I add HT into the calculation I should have achieved 83% chance of no progression for six years. I guess this is where the educated guess comes into the equation.


Thanks Chris

User
Posted 11 Aug 2021 at 16:47

 


Can anyone who has had ADT please advise how easy it is to maintain the same weight /  physique during treatment? Assuming ADT alongside SRT, not long-term palliative ADT.

User
Posted 11 Aug 2021 at 16:49

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member



 


Assuming I have the right data, I have a 75% chance of no progression after 6 years.



P


Assuming I have entered the right data I should have had a 68 % chance of no progression for six years.  In reality my PSA hit 0.22 26 months after SRT . If I add HT into the calculation I should have achieved 83% chance of no progression for six years. I guess this is where the educated guess comes into the equation.


Thanks Chris



 


Sorry if I am missing something, did you have HT or not?

 
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