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ARE RISKS GREATER THAN BENEFITS

User
Posted 20 Jan 2024 at 12:10

I am an Australian male of 80 with limited intelligence and a troubling, to me, history of prostate interference. My BPH of 1988 progressed to Radical Prostatectomy (RP) for PCa in 2015 and now return of PCa in one PCMA detected gland outside the former prostate area near the tail bone. Apparently the PCMA capacity is limited and while only one group of multiple PCa cells was located other cells are said to possibly have escaped the prostate and are sitting there multiplying as yet undetectable.

My RP was not accompanied by any chemical or radiation procedures and subsequent PSAs were 0.01 till 2020 before steady increases to 0.16 in April 2023 and 0.32 in August 2023. My Urologist suggests Radiation Therapy (RT) of the PCMA identified PCa only while my new Oncologist feels Radiation Treatment (RT) for the whole former prostate area could be undertaken along with Androgen deprivation therapy (ADT) for prostate cancer. He used the analogy that if we had a weed in our field we would not just pull it out but treat the whole field. The many side effects of these procedures were put as risks but it seems the benefits are impossible to determine. The life expectancy and quality of life along the way cannot be matched in any real way. There are no numbers or percentages to consider and the effects on the one hand and the other PCa cell likelihood are so questionable. I have type 2 diabetes, incontinence, knee osteo problems, hypertension, reflux, congestion and a few other minor issues. It seems the side effects of these two procedures can attack all the aging conditions our bodies develop. It is impossible for humans to evaluate this position and even IT would have problems.

I performed no real investigation of my prostate journey till after my RP. I then found our prostate treatments here to be very limited in comparison with those in the UK. We seemed to have only rebore or medication for BPH and for me just RP for the PCa. There seemed to be so many more available treatments elsewhere. Is our limited approach simply best practice or was cost comparison the reason? I began to doubt and still do.

In 1990 a scheduled biopsy was abandoned due to doubt over Ultrasound’s (U/S) capacity to recognise cancer. In 2009 a random 6 core biopsy found no evidence of malignancy. In 2015 U/S was still the government’s preferred choice and no assistance was provided for my MRI ($350) that detected the cancer. A biopsy was then required to proceed even though evidence that this did not spread the cancer was scant. I don’t know how happy I would have been then to proceed without more evidence of PCa but have concerns about where I am at now. Our governments boast of Medicare that is supposed to be similar to your NHS. Despite our $5400 per annum private health fund contribution Medicare contributed just $81 to the $240 cost of my initial Oncologist visit. So cost may also be a factor here.

Initially Alpha Blockers did the job for my BPH. Then when increase above 4mg was sought greater volume had not been researched. A 5a inhibitor was introduced together with its own 4mg Alpha Blocker. This took my Alphas to 8mg anyway and the 5a inhibitor had some suspicion of causing its own PCa.

Though overall my RP was a success hospital inappropriate procedures led to problems. Untreatable fungal Infections, rashes, blockages, many catheterisations, stents and ongoing incontinence. Small bickies in comparison to many on these sites. Comparatively more than many others in the general community.

In 1981 my father passed at 67 in hospital for bladder cancer of 2 months. His pneumonia 48 hours, small bowel obstruction days, Septicaemia 12 hours and cardiogenic shock 12 hours were all listed on his certificate. The radiation that he was being treated with and finally discontinued due to his failing condition was not mentioned. If he had made a different choice he would have lived longer. Earlier they had removed two thirds of his stomach due to ulcers. Soon afterwards they learned this could have been cured with just antibiotics. Life is becoming too hard for all of us to manage and now especially for me. I need the numbers, percentages and history of others and do not have the capacity to make this decision that I must without help?????? Barrie

User
Posted 20 Jan 2024 at 12:10

I am an Australian male of 80 with limited intelligence and a troubling, to me, history of prostate interference. My BPH of 1988 progressed to Radical Prostatectomy (RP) for PCa in 2015 and now return of PCa in one PCMA detected gland outside the former prostate area near the tail bone. Apparently the PCMA capacity is limited and while only one group of multiple PCa cells was located other cells are said to possibly have escaped the prostate and are sitting there multiplying as yet undetectable.

My RP was not accompanied by any chemical or radiation procedures and subsequent PSAs were 0.01 till 2020 before steady increases to 0.16 in April 2023 and 0.32 in August 2023. My Urologist suggests Radiation Therapy (RT) of the PCMA identified PCa only while my new Oncologist feels Radiation Treatment (RT) for the whole former prostate area could be undertaken along with Androgen deprivation therapy (ADT) for prostate cancer. He used the analogy that if we had a weed in our field we would not just pull it out but treat the whole field. The many side effects of these procedures were put as risks but it seems the benefits are impossible to determine. The life expectancy and quality of life along the way cannot be matched in any real way. There are no numbers or percentages to consider and the effects on the one hand and the other PCa cell likelihood are so questionable. I have type 2 diabetes, incontinence, knee osteo problems, hypertension, reflux, congestion and a few other minor issues. It seems the side effects of these two procedures can attack all the aging conditions our bodies develop. It is impossible for humans to evaluate this position and even IT would have problems.

I performed no real investigation of my prostate journey till after my RP. I then found our prostate treatments here to be very limited in comparison with those in the UK. We seemed to have only rebore or medication for BPH and for me just RP for the PCa. There seemed to be so many more available treatments elsewhere. Is our limited approach simply best practice or was cost comparison the reason? I began to doubt and still do.

In 1990 a scheduled biopsy was abandoned due to doubt over Ultrasound’s (U/S) capacity to recognise cancer. In 2009 a random 6 core biopsy found no evidence of malignancy. In 2015 U/S was still the government’s preferred choice and no assistance was provided for my MRI ($350) that detected the cancer. A biopsy was then required to proceed even though evidence that this did not spread the cancer was scant. I don’t know how happy I would have been then to proceed without more evidence of PCa but have concerns about where I am at now. Our governments boast of Medicare that is supposed to be similar to your NHS. Despite our $5400 per annum private health fund contribution Medicare contributed just $81 to the $240 cost of my initial Oncologist visit. So cost may also be a factor here.

Initially Alpha Blockers did the job for my BPH. Then when increase above 4mg was sought greater volume had not been researched. A 5a inhibitor was introduced together with its own 4mg Alpha Blocker. This took my Alphas to 8mg anyway and the 5a inhibitor had some suspicion of causing its own PCa.

Though overall my RP was a success hospital inappropriate procedures led to problems. Untreatable fungal Infections, rashes, blockages, many catheterisations, stents and ongoing incontinence. Small bickies in comparison to many on these sites. Comparatively more than many others in the general community.

In 1981 my father passed at 67 in hospital for bladder cancer of 2 months. His pneumonia 48 hours, small bowel obstruction days, Septicaemia 12 hours and cardiogenic shock 12 hours were all listed on his certificate. The radiation that he was being treated with and finally discontinued due to his failing condition was not mentioned. If he had made a different choice he would have lived longer. Earlier they had removed two thirds of his stomach due to ulcers. Soon afterwards they learned this could have been cured with just antibiotics. Life is becoming too hard for all of us to manage and now especially for me. I need the numbers, percentages and history of others and do not have the capacity to make this decision that I must without help?????? Barrie

User
Posted 20 Jan 2024 at 15:39

Barrie, I  can only give you my experience, I  am now 72,I try not to give advice.

I had RARP in 2014, in 2017 I had salvage RT to the prostate bed. The salvage RT to the bed did reduce the PSA but it then started to rise again. The salvage RT to the bed did some rare but severe damage to the bladder. In 2022 had SABR treatment to a lymph node and following another rise I had SABR treatment to another lymph nodes. I will find out how effective that treatment has been next week. 

 The SABR treatments had no side effects for me. I did have bicalutamide for six months with the second set of SABR treatment, the sore nipples, man boobs and reduced labido have all subsided since the bicalutamide finished. My first treatment was free on the NHS ,the second scan, consultations and treatment cost my insurance company around £30k.

Thanks Chris 

 

User
Posted 22 Jan 2024 at 12:33
For some, PCa treatment eradicates their problem, (more likely when diagnosed at early stage). For others it sets back the cancer for a varying number of years but then needs salvage treatment to set it back further and may involve more than one type of salvage treatment. Because there are different types of Prostate Cancer and men react differently to treatment, you can only really consider action at each stage taking as much as possible that can be established into account. With the benefit of hindsight, you might have done things rather differently. Considering your age and histology and the length of time since you had Prostate problems, you might think that treatment has worked quite well so far. The potential downsides of RT and maybe HT are well documented, although reaction by individuals is variable. Only you can decide whether you wish to go ahead, as nobody can tell you the extent to which you might be impacted.
Barry
User
Posted 30 Jan 2024 at 04:16

I got some info from UK Urology that was  more helpful than locally. It was "As always tricky! He can be reassured that whatever he does we would be confident to control his disease for at least 10yrs!

Option 1: do nothing and monitor PSA and start hormonal therapy when PSA gets to close to 10 (may take many years to get to 10). When/if starts hormones prob got 10 years of disease control with all the hormonal treatment options.

Option 2: if single site disease on PSMA could have SABR radiotherapy to the single area.
The aim of this is to defer the need for hormones for as long as possible (side effects of hormones not great) hopefully a few more years before something else springs up and then option 1 vs option 2 all over again

Option 3:  go for cure (relatively small chance) by giving hormones now and radiotherapy (would prob advise giving to whole pelvis rather than just node in this case. 

Problem with option 3 is maximal side effects.  Will have some bowel and bladder toxicity (frequency and urgency of both) and lethargy and hot flushes etc from hormones.

Would def go option 3 if he were 60 but at 80 I may lean option 1 or 2…Complicated!"

I like the UK better as I am OK now and don't expect another 10 years of anything. My Urologist always tells me that something else will kill me before Prostate Cancer but then steers me to all this mammoth treatment with all these horrific side effects. Six and a half weeks then many side effects "you may not have, you may have during treatment or you may have forever". I already have many of these effects from 80 years not looking after myself better. The extent these will expand is an issue. No one is capable of evaluating all this with so many different inputs and as many doubtful outcomes. One minute I am sad the probably wrong choice at first interview cost 6 weeks then it's a possible blessing.

I am not handling this well. The Urology consultation was a mess and neither of us were sure if he recommended the ADT along with the RT of only the PSMA identified area or just the RT alone. He said the Private Oncology he was referring me to would suggest the ADT and the whole pelvic area radiation, no reasoning behind either. Oncology suggested just that. I later phoned the Urology reception and asked for referral to the public system but he failed to get back. I got PSA and Testosterone update yesterday and my GP said she would arrange public referral and advise Urologist tomorrow. As private treatments are outpatient orientated they are not covered by our Health Insurance at all and Medicare is pretty mean. While this is not a deciding issue no one seems to want to mention cost and we are reluctant to bring it up. Just the sheer extent and doubt regarding these two treatments alone is simply impossible. Also the quality of life during the survival years of each option is not mentioned or understood. As we age the time and expense on maintenence seems to exceed the that of joy. My BPH/PCa journey from 1988 has had its many issues along the way and seems to never end. Women rightly complain of their specific issues but their decisions are a lot more straight forward than this.

User
Posted 02 Feb 2024 at 05:08

This weeks PSA was 0.80 and Testosterone 10.6. The latter was low at 7.5 on 18 December 2017. Treatment was not given then due to PCa concerns. I had Polymyalgia Rheumatica that was treated with Prednisone 12 December 2017 to 1 April 2019. That immune supression is a concern now. The PSA rise from 0.16 to 0.32 then 0.80 is more than I would like but when I look at it as a daily percentage 0.79% to 0.93% instead of 2 and a half times  from doubling I can fool myself a bit. I got a referral to the Public System and will probably seek a wait and see what the PSA does. I have been told there is no pain ahead of it entering the bones and I am hoping for a few good years ahead of those side effects. It seems possible that starting treatment down the line will not make a lot of difference. Barrie

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User
Posted 20 Jan 2024 at 15:39

Barrie, I  can only give you my experience, I  am now 72,I try not to give advice.

I had RARP in 2014, in 2017 I had salvage RT to the prostate bed. The salvage RT to the bed did reduce the PSA but it then started to rise again. The salvage RT to the bed did some rare but severe damage to the bladder. In 2022 had SABR treatment to a lymph node and following another rise I had SABR treatment to another lymph nodes. I will find out how effective that treatment has been next week. 

 The SABR treatments had no side effects for me. I did have bicalutamide for six months with the second set of SABR treatment, the sore nipples, man boobs and reduced labido have all subsided since the bicalutamide finished. My first treatment was free on the NHS ,the second scan, consultations and treatment cost my insurance company around £30k.

Thanks Chris 

 

User
Posted 20 Jan 2024 at 21:57

 

Hi Barrie only you can decide what to do but given your age and health issues it seems a bit excessive to me to radiate the whole of your pelvic bed when they have a target 

What was your gleason score and PSA pre RP ?

User
Posted 22 Jan 2024 at 12:33
For some, PCa treatment eradicates their problem, (more likely when diagnosed at early stage). For others it sets back the cancer for a varying number of years but then needs salvage treatment to set it back further and may involve more than one type of salvage treatment. Because there are different types of Prostate Cancer and men react differently to treatment, you can only really consider action at each stage taking as much as possible that can be established into account. With the benefit of hindsight, you might have done things rather differently. Considering your age and histology and the length of time since you had Prostate problems, you might think that treatment has worked quite well so far. The potential downsides of RT and maybe HT are well documented, although reaction by individuals is variable. Only you can decide whether you wish to go ahead, as nobody can tell you the extent to which you might be impacted.
Barry
User
Posted 23 Jan 2024 at 00:33

Thankyou!!!! Guys and Lizz.

I too think whole pelvic bed excessive with a target. The radiation kills other cells than PCa and there are a lot of needed body parts there too. It took 8 years for PCa to get to the edge node and everything close the surgeon removed was clear. There must be some figures and odds out there. These specialists can't be punters.

 

After recording it twice correctly I forgot my Urologist also recemmended the HT. So you can see I am all over the place with this. My fathers death came early as a result of radiation treatment for his bladder cancer of 2 months detection. Items listed on his certificate were side effects of radiation but the word was never used so it seems 1981 stats should not be used in any evaluation but I can't get that out of my mind. There is no way with my expertise and experience I can make an informed decision. Might as well toss a coin.

 

My highest ever PSA was 3.8 in April 2009. Doubtfull Duodart took it from 2.99 to 1.15 in 2013/14. When it hit 2.62 in June 2015 my GP overruled my old Urologist for MRI that detected the cancer. My new Urologist performed the biopsy arranged by my old one on 2 October 2015 and after 2 scans Open RP on 5 Noivember left no time for incontinence preparation. External infections and a mistreated blockage caused a lot of problems but I believe I got off lightly for my 8 years post diagnosis. Gleason Score was 3+4=7 pre and post surgery.

User
Posted 23 Jan 2024 at 01:21
Radiotherapy has progressed a huge amount since your dad had his treatment and the risks are usually more than outweighed by the benefits. However, if you don't want to have it, that is your right.

How would you feel about having just the hormone treatment on its own? There are side effects but not ones that would kill you - and for most men, can hold the cancer at bay for many, many years. Or you could consider orchidectomy (removal of the testicles).

Or you could do nothing for the time being and see what your PSA des over the next few months. My dad has had a recurrence but his PSA rise is quite slow and the urologist estimates that it will take 20 years to kill him - as he is already 87, he feels comfortable taking a chance!

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

User
Posted 30 Jan 2024 at 04:16

I got some info from UK Urology that was  more helpful than locally. It was "As always tricky! He can be reassured that whatever he does we would be confident to control his disease for at least 10yrs!

Option 1: do nothing and monitor PSA and start hormonal therapy when PSA gets to close to 10 (may take many years to get to 10). When/if starts hormones prob got 10 years of disease control with all the hormonal treatment options.

Option 2: if single site disease on PSMA could have SABR radiotherapy to the single area.
The aim of this is to defer the need for hormones for as long as possible (side effects of hormones not great) hopefully a few more years before something else springs up and then option 1 vs option 2 all over again

Option 3:  go for cure (relatively small chance) by giving hormones now and radiotherapy (would prob advise giving to whole pelvis rather than just node in this case. 

Problem with option 3 is maximal side effects.  Will have some bowel and bladder toxicity (frequency and urgency of both) and lethargy and hot flushes etc from hormones.

Would def go option 3 if he were 60 but at 80 I may lean option 1 or 2…Complicated!"

I like the UK better as I am OK now and don't expect another 10 years of anything. My Urologist always tells me that something else will kill me before Prostate Cancer but then steers me to all this mammoth treatment with all these horrific side effects. Six and a half weeks then many side effects "you may not have, you may have during treatment or you may have forever". I already have many of these effects from 80 years not looking after myself better. The extent these will expand is an issue. No one is capable of evaluating all this with so many different inputs and as many doubtful outcomes. One minute I am sad the probably wrong choice at first interview cost 6 weeks then it's a possible blessing.

I am not handling this well. The Urology consultation was a mess and neither of us were sure if he recommended the ADT along with the RT of only the PSMA identified area or just the RT alone. He said the Private Oncology he was referring me to would suggest the ADT and the whole pelvic area radiation, no reasoning behind either. Oncology suggested just that. I later phoned the Urology reception and asked for referral to the public system but he failed to get back. I got PSA and Testosterone update yesterday and my GP said she would arrange public referral and advise Urologist tomorrow. As private treatments are outpatient orientated they are not covered by our Health Insurance at all and Medicare is pretty mean. While this is not a deciding issue no one seems to want to mention cost and we are reluctant to bring it up. Just the sheer extent and doubt regarding these two treatments alone is simply impossible. Also the quality of life during the survival years of each option is not mentioned or understood. As we age the time and expense on maintenence seems to exceed the that of joy. My BPH/PCa journey from 1988 has had its many issues along the way and seems to never end. Women rightly complain of their specific issues but their decisions are a lot more straight forward than this.

User
Posted 30 Jan 2024 at 06:20

Originally Posted by: Online Community Member
He used the analogy that if we had a weed in our field we would not just pull it out but treat the whole field.

I'm in Australia [near Port Macquarie NSW] aged 76, had RT and HT to treat the prostate, seminal vesicles and three lymph glands. The RT was not the least "treating the whole field", each lymph gland was mapped and treated with a margin a few millimeters. In addition some nearby "likely next in line" glands were treated but the RT was not a broad spray of radiation and I've had no after effects 3 years on

Jules

User
Posted 30 Jan 2024 at 13:04

You should ve been informed that ADT could make your osteo knee problems worse also ADT will not help your  diabetes there is a link to dementia too 

With such a low PSA  3.8 and gleason score  3+4  and at 80 years old I would say it would be over treatment to have ADT and RT 

But  it's your body and your choice (and your money)

 

User
Posted 02 Feb 2024 at 05:08

This weeks PSA was 0.80 and Testosterone 10.6. The latter was low at 7.5 on 18 December 2017. Treatment was not given then due to PCa concerns. I had Polymyalgia Rheumatica that was treated with Prednisone 12 December 2017 to 1 April 2019. That immune supression is a concern now. The PSA rise from 0.16 to 0.32 then 0.80 is more than I would like but when I look at it as a daily percentage 0.79% to 0.93% instead of 2 and a half times  from doubling I can fool myself a bit. I got a referral to the Public System and will probably seek a wait and see what the PSA does. I have been told there is no pain ahead of it entering the bones and I am hoping for a few good years ahead of those side effects. It seems possible that starting treatment down the line will not make a lot of difference. Barrie

User
Posted 11 Feb 2024 at 01:32

Had second opinion Oncology and a further option surfaced. He ruled the surveillance out, with or without ADT and also felt the "whole field" radiation may damage waste functions too much for me. I am, so far, going along with his, ADT + RT but excluding former prostate site and the bowel and bladder areas. This, it seems, will take in more area than my Urologist's "just the PSMA identified node" and hopefully include the possible single PCa cells not yet identifiable by the Pet Scan. All too many options, the risks of both side effects and not enough or too much treatment are huge and I don't have the expertise or strength to make this decision. I am relying on the experience of experts  and they are all different. Again I am to receive a fortnight's phone consultation and hope I don't change my mind before then????????????

User
Posted 11 Feb 2024 at 08:43

You have plenty of time to think it over 

 
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