I haven't found any research yet on removing the 'mothership'. I would want something more convincing than the opinion of one eminent doctor. Remember in the US they do a massive number of circumcisions on babies for no medical or religious reason, "it's just what we do".
Dr Kwon for years was talking about SABR for patients who developed a small number of distant mets. I took that with a pinch of salt assuming he was cherry picking cases, but it has now been proved in a trial and is now standard practice. So maverik doctors can be right or wrong, and any treatment has to start as a hunch "I'm sure my head felt better after eating that willow bark".
Andy has mentioned the stampede trial, which suggested RT to the 'mothership' may reduce distant mets. There is a good video on this page.
http://www.stampedetrial.org/participants/about-stampede/
As Andy says it may have been misdiagnosis of bone mets which caused these results.
It seems the Atlanta trial will probably give an answer on removing the 'mothership'.
Julian has asked for facts not speculation so everything above this sentence are the facts as I know them and they are very limited. Everything below this sentence is my speculation and only of value for entertainment.
My first thought is that there is no reason why cancer would need a signal to grow. Having said that in a well functioning body cells only grow where they should do. Liver cells grow in the liver: kidney cells in the kidney, so cells must be receiving signals (presumably) from their neighbours as to where to grow. I can believe cancer cells may leak these chemical signals to the blood stream so a rogue prostate cancer cell in a bone is still getting a signal that prostate cells are near by.
My next question would be after RT when all the cancer cells in the 'mothership' are dead, would the effect above still apply? I can't see how a healthy prostate could encourage distant mets, any more than a healthy kidney could trigger spontaneous kidney cancer in the brain.
So on balance there may be a tiny benefit to removing the 'mothership'. But could you not argue that when someone is newly diagnosed there is a tiny chance there is a micromet in their right arm so just to be on the safe side we should amputate their limbs to reduce the chances of recurrence, indeed we should remove the whole body and put their brain in a jar fed with nutrients. The reason we don't do this is the side effects are disproportionate.
So it is a case of finding a balance, we don't know if there is any benefit to removing the mothership, but some people are prepared to accept the side effects of an unproven procedure, and the psychological side effects are beneficial to that person's health.
At the time of my diagnosis my medics would not offer me a pointless prostatectomy. I would have been inclined to accept one at the time because I had the sword of Damocles above me. Now with hindsight I am glad my medics did not give me the choice.
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At present, it looks like we will not have a definitive answer on the advantage of removing a radiated Prostate to reduce the chance of spread until after the trial to determine this has run longer enough to produce meaningful statistics but what we do know is that Prostatectomy after RT is particularly challenging and most surgeons don't wish to attempt it. Also, that it considerably increases side effects especially the risk of permanent incontinence, so only makes sense doing if there is a proven advantage in doing so.
Barry |
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Originally Posted by: Online Community Member
Men who are diagnosed with PC seek definite answers which don't exist. It would be helpful to them if the urologists, oncologists and some writers on this platform cease being dogmatic and help PC patients to make the right decision for them.
Unless there are some urologists/oncologists hiding in plain site in the group then the only information anyone can impart is based on their own situation and experience.
The only people who can advise anyone with a PCa diagnosis on their treatment are their doctors who have the training, diagnostic skills and information to be able to advise.
All we, as former and fellow sufferers can do, is explain how it affected us and why we made our choices and hopefully inform/educate newcomers on the questions that they should be asking of their support team.
User
Hello .This is not just a theory postulated by DR Walsh but has been proved in respect of breast cancer treatment and other prostate oncologists are postulating the same idea .Here are two links for you to look at there are other sources of information on the subject too if you care to investigate .The very fact that there is enough information out there to warrent a trial should indicate that there is reason to believe merit in the idea that removal of the prostate in advanced cases may give better outcomes and surely that is what we all want
https://www.standard.co.uk/news/health/prostate-cancer-patients-to-be-offered-lifesaving-operations-on-nhs-for-the-first-time-a3715866.html
.https://www.broadcastmed.com/cancer/5225/news/a-new-way-to-attack-early-metastatic-disease
Edited by member 18 Sep 2023 at 17:26
| Reason: Not specified
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The mothership principle is relevant to those initially diagnosed as metastatic, not those who have curative treatments.
We know radiotherapy on the mothership extends life when the metastatic tumour burden is low (small number of distant mets). This was the finding of one branch of the UK STAMPEDE trial and is now the standard of care. It doesn't work when there are lots of mets, probably because some of them have become motherships too.
The ATLANTA trial is extending this in a couple of ways:
• It adds additional non-curative treatments to the prostate; prostatectomy or focal therapies to see if these can extend life too, in addition to the current radiotherapy standard of care (which is also included in the trial probably for comparison).
• It adds the possibility of having small numbers of mets treated with SABR - this is a standard of care today if a small number of mets are discovered only after a curative radical treatment (which consequently failed to cure), but if such mets were found during initial diagnosis, then current standard of care wouldn't treat them (which never made sense to me), but the trial can.
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Following on from a series of posts here on RT v surgery it's clear that the work of Dr. Patrick Walsh is influential in the decisions that some people are making about PCa treatment. Dr Walsh is a respected urologist, author of Surviving Prostate Cancer and Professor of Urology at John Hopkins.
I haven't read Walsh's book but apparently he suggests that:
"a cancerous prostate acts as a mothership, sending out chemical messages to cancer cells in the blood stream to grow"
and that:
even a prostate that has been treated with RT can still act as a "mothership" to send out chemical messages to micromets in the blood stream or hiding elsewhere in the body for years.
The idea that you might be harbouring invisible, undetectable micromets is enough to scare anyone and the only logical inference that can be drawn from the second claim, if it's accepted, is that RT of the prostate is not by itself a treatment that could be classed as having "curative intent", to use the lingo.
I'm interested in facts and research papers not speculation so I ask here what the state of research on this topic is and are there any published works that we can read?
I can't avoid the observation the mothership theory is, even now, a massive boost to urology and prostatectomies and at the same time a potential blow to oncology and RT.
Jules
User
My urologist told me that the immune system is constantly finding and destroying cancer cells - it is something we all have all the time, the problem is the ones it doesn't deal with.
RT damages cells and exposes them to the immune system, this exposure is known to "shine a light" on distant metastases. The process is similar to vaccination, but the vaccine material is the RT damaged cells that were previously invisible become visible to the immune system and this includes distant unirradiated cells with the same DNA.
That's my understanding anyway feel free to challenge.
Not sure how the mothership theory for prostatectomy can work other than by removing the source of tumours and stopping the constant shedding of seeds.
User
It may be of interest to older readers that one of the reasons I chose RARP 12 years ago was that before I was diagnosed with PC I suffered from a lot of prostate associated problems: prostatitis which caused a lot of pain and urinary problems of urgency and frequency, particularly at night. My reasoning was that if I get rid of the prostate I would be free of my long term problems. My urologist had no opinion on my reasoning but now I am cancer free (as far as one can say!) and all the other problems have disappeared. I suffer from very mild incontinence and the risk of ED did not bother us because my erections were getting weaker and unreliable anyway because of my age. Mild incontinence is a nuisance but we can deal with it and we use a VED.
Men who are diagnosed with PC seek definite answers which don't exist. It would be helpful to them if the urologists, oncologists and some writers on this platform cease being dogmatic and help PC patients to make the right decision for them.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
I am waiting for the book to arrive. If the book claims this 'mothership' concept the writer has to provide scientific evidence otherwise he is misleading the public. I look forward to reading the book.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
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Hi .The trial is the Atlanta trial and is ongoing .
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For those who are questioning the validity of the mothership theory here is the link to Prostate Cancer UK s own explanation of the Atlanta trial and why it is being undertaken .Clarifys the theory and shows that it is not such an outlandish idea after all as some on this particular thread have been suggesting as its not just one doctors idea .
I am someone who was considered to have locally advanced cancer only after my prostectomy and may not have been able to have my prostate removed if the spread had been known beforehand .As it is I have benefitted greatly from having it removed because my salvage RT was commenced when my PSA was undetectable Enzalutimide and the three monthly Decapeptyl injection having proved very successful .By removing the Prostate the cancer load was substantially reduced which made the salvage RT very effective as only small areas of disease remained and these were identified by a PET scan .Today I had my three monthly consultation with my consultant my PSA is still undetectable for over three years now and all blood tests normal .
https://prostatecanceruk.org/about-us/news-and-views/2019/9/new-atlanta-trial-focuses-on-advanced-prostate-cancer
Edited by member 19 Sep 2023 at 17:36
| Reason: Not specified
User
If I was to guess, I suspect RT in the case of metastatic disease is most likely to win, because it covers the largest treatment area including the prostate bed, and can easily include and cure nearby lymph nodes, and is therefore likely to remove the largest tumour volume.
Prostatectomy has a sharp treatment cutoff, literally being the surgeon's scalpel cut. We already know in the case men not diagnosed as metastatic that this fails to cure in 30% of cases, mostly due to cancer already having escaped into the prostate bed. Also, Prostatectomy has the largest side effect profile impacting quality of life, being continence and if significant pelvic lymph node dissection is included, lymphodema (can mostly ignore ED as these men will be on HT anyway).
Including focal therapy seems a bit strange to me, given these can only treat part of the prostate in any case. I don't know how many metastatic patients only have small tumour burden inside the prostate, although focal therapies don't always aim to clear all the cancer in the prostate.
User
The mothership theory was already proven by the UK STAMPEDE trial, and is now the standard of care in the UK.
Metastatic patients don't generally need to worry about treatment induced secondary cancers, as they're typically 20+ years later, and that is based on radiotherapy treatments which were much less precise than those given in the last 10 years.
Edited by member 20 Sep 2023 at 14:43
| Reason: Not specified
User
It is not surprising that there is a great deal of confusion around the 'mothership' hypothesis. From what I have read here and other sources, this concept is no more than a hypothesis. Men suffering from advanced prostate cancer should be careful how you assess your situation on the basis of this unproven concept. Comments from consultants, some of them quite well known, appear to me to be based on their subjective judgement - that is not scientific.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
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Hi Andy62
Am I missing something here? Are you talking about 'mothership' theory or STAMPEDE therapy? Are they not two different things. One is about cancer tumours communicating with remote cells whereas STAMPEDE study was simply to find the drugs that can 'cure' cancer that has spread? STAMPEDE study has a strong scientific basis whereas 'mothership' concept is simply an unverified hypothesis.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
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You are right that STAMPEDE was mainly looking at repurposing existing drugs, but in STAMPEDE Arm H, they repurposed radiotherapy.
There had been a previous relatively small trial HORRAD which had tried prostate radiotherapy on metastatic patients. It didn't find any benefits, but there was a suspicion that for those with very few mets, there might be a survival benefit, although the numbers involved in that trial were too small to be statistically significant.
STAMPEDE Arm H was established to look at this again, and was a much bigger trial. It confirmed the previous suspicion that those with a low tumour burden (fewer than 5 bone mets), treating the prostate with radiotherapy did improve overall survival benefit, and progression free survival during the observation period.
Radiotherapy to the primary tumour for newly diagnosed, metastatic prostate cancer (STAMPEDE): a randomised controlled phase 3 trial
The trial was run from 2013 to 2016 and reported in 2018. It would be good if they could report again having had longer since then to monitor the patients.
The results were regarded as significant, and this became the standard of care in the UK around 2019.
User
I don't know the answer to your question about where it's most likely to occur after a long time. Certainly, in the case of recurrence after a shorter time, it's most often in the prostate bed, although some research where PSMA PET scans were performed before the prostate bed treatment found that in 40% of cases, the results from the PSMA PET scan changed the pattern of salvage radiotherapy dose that would have been delivered without having had the scan first. For patients with recurrence after a long time, you'd probably have to split them into those who were still being monitored at least yearly, and those who weren't, as I might expect that to have a significant impact on extent and location of recurrence.
In the case where substantial spread has occurred, no one is going to go back and investigate how that happened, as it would be very difficult to do and it's of no clinical significance (i.e. it won't change how it's treated).
Nowadays, seminal vesicles are always removed with the prostate even if not thought to be involved in the cancer, but that hasn't always been the case, and might not have been the case in some people having recurrence ≥10 years later today. Actual spread to seminal vesicles (T3b) reduces the likelihood of a prostatectomy being curative, and most surgeons will not operate if this is the suspected staging before the surgery, and radiotherapy is available for the patient.
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The STAMPEDE trial in the UK was the research which showed that zapping the mothership tumour seemed to cause small mets (not micro-mets) do recede for some time (although not usually die). This is now the standard of care in the UK, because if you have only a small number of mets (referred to as a low tumour burden), radiotherapy on the main tumour extends life and is considered worth it. If you have lots of mets, radiotherapy on the main tumour was of no benefit, quite likely because some of the other tumours are now in the position to feed the smaller mets with what they need to grow.
This would be based on nuclear bone scans, where if only a small number of areas light up so you have low tumour burden, non-curative radiotherapy to the prostate will be offered.
However, just recently, some research has suggested that nuclear bone scans showing low tumour burden can be giving a significant number of false positives - in other words, some of these patients weren't metastatic at all. That does raise a question of how many of these men in the STAMPEDE trial who were diagnosed as metastatic with low tumour burden, were actually not metastatic in the first place?
Micro-mets are a different topic, since by definition they were never seen on scans. Yes it's likely they too are supported by chemical messages from the prostate and mothership tumour. One of the theories of how hormone therapy works is that the prolonged shutdown of the prostate cells with the loss of Testosterone also causes micro-mets to die, so they can't then go on to cause recurrence after radiotherapy and hormone therapy.
User
I think there are 2 elements of the 'mothership' theory - the scientific one that Andy discusses and the psychological one. You would not believe how great I feel that my prostate is now out of my body, regardless of whether it was completely necessary or not. The thought of it still being there, regardless of whether it was zapped with radiation or not, is not something I want or need in my life :)
User
I see your point but I went the h/t r/t route as I didn't want all the side effects associated with a prosectomy I am pleased with my results 4 year's on from treatment psa 0.01 and life back to normal without the catheter and incontinence we all have a choice I am pleased with mine as you are with your treatment all the best gaz 👍
User
Hello .Yes there is a trial underway the 'Atlanta trial ' which is looking at this in respect of prostate cancer that has spread outside the prostate as normally men would not be offered a prostectomy if cancer had spread .Men who have advanced cancer will be offered various types of treatment including prostectomy and this long term study will analyse the results to see if removal of the prostate offers better results along with various forms of RT and other treatments. Prostectomy removes the source of the cancer and thus lessens the cancer load .RT can cure the cancer but the prostate remains in the body and many men are uneasy at the thought of the prostate remaining even after treatment .
User
No facts but I had a hunch that removing the big one would slow any rogue movements.
As Steve says for him, I too was elated to have it out. Also I believed that any side effects would be the least of my worries.
User
Following SABR treatment to a single lymph node last year my PSA shot up from 1.8 to 6.2 in around 7 months. When looking for answers I came across an article (possibly in )practice update that seemed to contradict the idea that removal of the mothership slowed down the growth. Unfortunately and despite much searching I cannot find it and from memory it was quite an old research document.
Thanks Chris
User
I haven't found any research yet on removing the 'mothership'. I would want something more convincing than the opinion of one eminent doctor. Remember in the US they do a massive number of circumcisions on babies for no medical or religious reason, "it's just what we do".
Dr Kwon for years was talking about SABR for patients who developed a small number of distant mets. I took that with a pinch of salt assuming he was cherry picking cases, but it has now been proved in a trial and is now standard practice. So maverik doctors can be right or wrong, and any treatment has to start as a hunch "I'm sure my head felt better after eating that willow bark".
Andy has mentioned the stampede trial, which suggested RT to the 'mothership' may reduce distant mets. There is a good video on this page.
http://www.stampedetrial.org/participants/about-stampede/
As Andy says it may have been misdiagnosis of bone mets which caused these results.
It seems the Atlanta trial will probably give an answer on removing the 'mothership'.
Julian has asked for facts not speculation so everything above this sentence are the facts as I know them and they are very limited. Everything below this sentence is my speculation and only of value for entertainment.
My first thought is that there is no reason why cancer would need a signal to grow. Having said that in a well functioning body cells only grow where they should do. Liver cells grow in the liver: kidney cells in the kidney, so cells must be receiving signals (presumably) from their neighbours as to where to grow. I can believe cancer cells may leak these chemical signals to the blood stream so a rogue prostate cancer cell in a bone is still getting a signal that prostate cells are near by.
My next question would be after RT when all the cancer cells in the 'mothership' are dead, would the effect above still apply? I can't see how a healthy prostate could encourage distant mets, any more than a healthy kidney could trigger spontaneous kidney cancer in the brain.
So on balance there may be a tiny benefit to removing the 'mothership'. But could you not argue that when someone is newly diagnosed there is a tiny chance there is a micromet in their right arm so just to be on the safe side we should amputate their limbs to reduce the chances of recurrence, indeed we should remove the whole body and put their brain in a jar fed with nutrients. The reason we don't do this is the side effects are disproportionate.
So it is a case of finding a balance, we don't know if there is any benefit to removing the mothership, but some people are prepared to accept the side effects of an unproven procedure, and the psychological side effects are beneficial to that person's health.
At the time of my diagnosis my medics would not offer me a pointless prostatectomy. I would have been inclined to accept one at the time because I had the sword of Damocles above me. Now with hindsight I am glad my medics did not give me the choice.
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User
Thank you everyone for your balanced replies.
We know that testosterone "feeds" prostate cancer but mothership theory proposes a couple of elements that seem to be hypothetical so far:
*Undetectable micromets that, like dark matter probably exist but as yet it seems nobody has thought of a way to find them.
*There is a chemical released from a cancerous prostate [and mets?] that stimulates the growth of micromets. I'm left wondering if this chemical is similarly hypothetical or, if it's been identified and studied?
With the ideas proposed in Prof. Walsh's book, I'm still wondering if he's published papers based on completed research or if he's outlining theories he's working on.
Jules [yes Dave, I am a Julian 😀]
Edited by member 16 Sep 2023 at 07:49
| Reason: Not specified
User
My urologist told me that the immune system is constantly finding and destroying cancer cells - it is something we all have all the time, the problem is the ones it doesn't deal with.
RT damages cells and exposes them to the immune system, this exposure is known to "shine a light" on distant metastases. The process is similar to vaccination, but the vaccine material is the RT damaged cells that were previously invisible become visible to the immune system and this includes distant unirradiated cells with the same DNA.
That's my understanding anyway feel free to challenge.
Not sure how the mothership theory for prostatectomy can work other than by removing the source of tumours and stopping the constant shedding of seeds.
User
Hello .It would be useful for those who have not read the book Surviving Prostate
Cancer to read it as it is very interesting and covers all aspects of Prostate cancer and its treatment .
The very fact that there is now a trial studying whether the removal of the prostate in advanced cases is beneficial indicates that there is a requirement to consider if outcomes are better in advanced cases if the prostate is removed .
Over time and it will need to be over many years a definative answer may be forthcoming .RT can cure prostate cancer but many men prefer to have the prostate removed as it is the source of the cancer and by removing it the cancer load is immediately reduced .It is noted that Salvage RT is much more successful if commenced when PSA is at a very low level hence the instigation of hormone therapy prior to commencing RT to reduce the PSA level as much as possible .
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Originally Posted by: Online Community MemberI haven't found any research yet on removing the 'mothership'. I would want something more convincing than the opinion of one eminent doctor. Remember in the US they do a massive number of circumcisions on babies for no medical or religious reason, "it's just what we do".
Not relevant in the slightest but I wish they had done that in the 1960's in the UK - I had to be circumcised at 25 years old as the Dr that delivered me refused to do the circumcision :) :)
User
Thanks for the post, that's helpful information, though I have to laugh when Drs use commonplace analogies to explain stuff that the rest of us are always going to have trouble with. Comparisons with engine function seem to be quite popular. 7 years of study for a degree plus another 5 or so to become a specialist might bring some clarity but that's even longer than HT treatment!
I looked up the Stampede trial after reading your posts Librajc and it's certainly producing some good results at the 5 year mark. Dealing with the side effects long term must be a challenge but all strength to your efforts!
Jules
User
Originally Posted by: Online Community MemberIt would be useful for those who have not read the book Surviving Prostate Cancer to read it as it is very interesting and covers all aspects of Prostate cancer and its treatment .
Elsewhere in this forum there's a very well documented thread on HIFU by Paulshere, where he makes a strong case suggesting that some of the results claimed by a leading professor are misleadingly optimistic.
It's understandable that researchers can be excited about their results and maybe unintentionally gild the lily a little but my sole point here is to ask for published work, trials and results that support the ideas in Walsh's book, partly because it seems to have been very influential and perhaps most critically, because it appears to be leading people into believing that if they remove the prostate, even when there's already spread, the absence of the prostate will slow the advance of the disease from cancerous glands or bones.
I'm trying to stay away from "my opinons" here but so far as I know, removal of the prostate will not slow the advance of cancer if it's already spread. I have to add that I don't know if Walsh has suggested that in his book but that appears to have been the inference that some have drawn from his writing.
Jules
Edited by member 17 Sep 2023 at 07:27
| Reason: Not specified
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I haven't read the book yet but any claim allegedly made in this book should have a scientific basis. On the basis of what I have read here I must say the concept appears to me to be far-fetched.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
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As I said earlier there is actually a trial on at the moment to ascertain if removal of the prostate in advanced cases gives better outcomes .To me its a no brainer why keep a diseased organ in the body even if it has been subjected to RT when by removing it the cancer load is lessened .There are many differing views on this subject but hopefully the trial will provide a definative answer .Dr Walsh is a very well respected physician whose knowledge on the subject of prostate cancer is extensive and far greater than any of us who are not medical experts in prostate cancer .
User
At present, it looks like we will not have a definitive answer on the advantage of removing a radiated Prostate to reduce the chance of spread until after the trial to determine this has run longer enough to produce meaningful statistics but what we do know is that Prostatectomy after RT is particularly challenging and most surgeons don't wish to attempt it. Also, that it considerably increases side effects especially the risk of permanent incontinence, so only makes sense doing if there is a proven advantage in doing so.
Barry |
User
We are talking specifically about cancer here not the degenerative diseases of old age .Removing a cancerous tumour is standard practice for most cancers followed by RT and chemotherapy if necessary .
RT does cure prostate cancer there is no doubt about it but as I have said earlier many men prefer to get rid of the diseased organ not keep it in their body .There will always be new and better treatments in the pipe line and outdated methods of treatment will no longer be appropriate hence the trial underway in respect of how best to treat advanced prostate cancer which may not be the way it has been approached before .It is also well documented that removal does not preclude salvage RT should it be required whereas removal of the prostate is much more difficult once RT has been given as the first line treatment. We live in very exciting times as far as the new drugs to treat this cancer are concerned there is much in the pipeline that will hopefully make Advanced Prostate cancer a disease that can be managed and controlled in the same way Diabetes is .Enzalutimide in particular is proving very promising not just for Prostate cancer either .
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It may be of interest to older readers that one of the reasons I chose RARP 12 years ago was that before I was diagnosed with PC I suffered from a lot of prostate associated problems: prostatitis which caused a lot of pain and urinary problems of urgency and frequency, particularly at night. My reasoning was that if I get rid of the prostate I would be free of my long term problems. My urologist had no opinion on my reasoning but now I am cancer free (as far as one can say!) and all the other problems have disappeared. I suffer from very mild incontinence and the risk of ED did not bother us because my erections were getting weaker and unreliable anyway because of my age. Mild incontinence is a nuisance but we can deal with it and we use a VED.
Men who are diagnosed with PC seek definite answers which don't exist. It would be helpful to them if the urologists, oncologists and some writers on this platform cease being dogmatic and help PC patients to make the right decision for them.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Originally Posted by: Online Community Member
Men who are diagnosed with PC seek definite answers which don't exist. It would be helpful to them if the urologists, oncologists and some writers on this platform cease being dogmatic and help PC patients to make the right decision for them.
Unless there are some urologists/oncologists hiding in plain site in the group then the only information anyone can impart is based on their own situation and experience.
The only people who can advise anyone with a PCa diagnosis on their treatment are their doctors who have the training, diagnostic skills and information to be able to advise.
All we, as former and fellow sufferers can do, is explain how it affected us and why we made our choices and hopefully inform/educate newcomers on the questions that they should be asking of their support team.