Diet guidelines

Look guys, I really am sorry for pushing this.  But, where are you getting this evidence from?  Where are the linked, peer-reviewed studies?  I am sure you all mean well, but I asked a few days ago for extra information and none has been forthcoming.  Instead, we have a post like the one above which adds more unqualified information that contradicts previous unqualified information.

A lot of people will be passively reading these forums, and a lot will take the advice at face value believing it will help them.  

What is the difference between organic cucumber and non-organic?  

You give off "this is a fact" vibes in your responses (which I am sure are well intentioned) - but please, when claiming you have found information that backs up a claim - LINK IN THE STUDY SO WE CAN SEE FOR OURSELVES.

It's dangerous.  It really is.

As with any patient forum, you really need to hang around for a while to see who is giving useful info and who isn't. Anyone who uses the internet needs to understand critical thinking, verification of sources, etc. which isn't something many people first exposed to the internet in adulthood will have ever learned, unless you work in a science or research environment. (It is now taught in schools, but that's relatively recent.) Generally, incorrect info is corrected quite quickly here because there are a number of very expert patients, certainly better than most other forums I've been on. This poster has been posting her private theories for a while - a mixture of things she's read which are correct, but then misunderstanding how they apply (DHT is a great example, which has previously been explained, but she seemingly didn't understand). On the basis of this, she seems to have stopped her husband having hormone therapy and put him on watermellon/soya/etc instead, which is incredibly dangerous if he actually needs hormone therapy, and yes, it is dangerous if others read those posts and think there's any validity in them, which is why it's important to correct them. I think people may have given up correcting her because it just looks like you're picking on people, which she has already complained about. However, most here will know the reliability of those postings - you may have turned up just after those initial postings and the responses correcting them.

Lizzo, why are you saying I am a chauvinist?  I asked you a load of questions to back up your claims with actual studies.  There is nothing prejudicial about that - I am also looking at my diet to see if there are any ways in which I can adapt to protect myself in the future from any chronic disease.  I asked the nurses here directly (all of them ladies by the way) and they told me there isn't really any strong evidence to suggest certain foods cause PCa, and certain foods prevent it.  I followed this up with my GP (a young gentleman of Omani descent) who also said there is no strong evidence.

If you do have strong evidence, then please share the links because it could be very important and useful information.  It could also be that what you have read, and repeated, is not from a peer-reviewed scientific journal.

I do have concerns that passive observers on this forum will read what you say, take it at face value, and start blaming themselves for having a diet that contains a lot of dairy.  You need to add context if you are making bold claims.

I have also asked the same from Lyn Eyre about childhood diet and Prostate Cancer links.  For both of your posts, I also tried Googling to find where your information is coming from, and in neither case was I able to find peer-reviewed studies or recommendations based on studies.  That's not me accusing either of you of passing off incorrect information, and I am definitely not saying it is being done maliciously.  That is me asking for you both to share your links so that I can read them and make my own choices based on the evidence that you both have but do not share.

I have also asked a gentleman on here who told a Mexican chap that he has two treatment options of Prostatectomy or RT - despite the Mexican chap even having had an MRI - what his advice was based on.  This same gentleman told me that PCa will not be an issue for me for 10 years - i.e. I will get PCa in 10 years time.  Based on what?  I have no idea.

Just so that you know this isn't a "female" thing - I have taken advice from female nurses.  Just so you know it's not a possible racial thing, I have taken advice from a Middle-Eastern, Muslim doctor.  Just so that you know it is not an age thing, I have taken advice from a 70 year old Welsh nurse who has worked in this field for 50 years.

In all cases of them giving me advice they all did one thing in common.  They pointed me to, or sent me actual information.  

I appreciate you are going through your own battle right now, and I sincerely wish you well and hope everything goes well.  But, this board is read by hundreds of people - people who are worried about test results, people who are worried about treatments, people who are worried about their own prognoses.  I will say here, for those readers, that no two cases are the same.  That is the advice a female GP gave me when I told her my festering anxieties that were generated from well-meaning, but completely unbased, evidence I was given.  

I appreciate that you are trying to be helpful, but I just don't think the penny is going to drop with some folks on here that, even if the advice is well-meaning, if it is incorrect it can cause apprehension, self-blaming, self-diagnosing, self-treating.  It is irresponsible to give advice as if it is the answer to a problem when that advice is merely an opinion based on anecdotal evidence, self-belief evidence, conspiracy theory evidence (i.e. big Pharma).  The pen is mightier than the sword, but a peer-reviewed scientific journal is mightier than well-intentioned unqualified advice that is misinterpreted, or misunderstood by the author.

I cannot say it clearly enough.  This is being read by people in various states of their own journeys.  From people like me (elevated PSA, followed by normal PSA - now trying to find ways to improve my health, and my prostate health) - to people like the Mexican chap who has an elevated PSA but no MRI or DRE, to people who are undergoing treatment, or have received treatment.  We all, ALL, have a responsibility to make sure that we are supportive people in the same boat, rather than supportive, unqualified, amateur consultants. 

There's a reason why consultants are earning big money - they are clever, have studied for years.  It's also a reason why the wonderful nurses should also be earning big money.  They are worth their weight in gold.  As are those volunteers who donate their time, and emotional efforts, to helping people and relatives.

I have not once criticised you as a person.  I have, however, responded to advice you have given - asking for evidence to back it up.  As a result of that you think I am bullying you.  I just hope that, in the course of reading this thread, that people who are desperately looking for help and advice with diets do two things

1)  Take your advice with a pinch of salt until you provide evidence

2)  Take their concerns to the brilliant nurses on this site and/or their GP/Urologist/Oncologist.

All the people on this forum can legitimately do is share their own experiences.  Giving advice like "It's milk that's done it", or "It's childhood habits that done it", or "In 10 years you'll have it" needs to be backed up with actual science.  Until then it is anecdotary - well meaning yes, factual, not so much. 

Like I say, we all have a responsibility to not be giving advice as if it is completely factual, certainly not without links anyway.  

This is the NHS link to healthy eating:

https://www.nhs.uk/live-well/eat-well/how-to-eat-a-balanced-diet/eating-a-balanced-diet/

This is the USDA "My Plate" advice (Note - they say "About 90% of Americans do not get enough dairy. ") 

https://www.myplate.gov/eat-healthy/what-is-myplate

This is the , very extensive, Australian advice on Healthy eating

https://www.eatforhealth.gov.au/sites/default/files/2022-09/n55_australian_dietary_guidelines.pdf

The overall message from those three, English speaking, Governments is broadly the same.  

I'm out. I do not think there's a place in this forum for anyone who chooses to advise against life saving treatment for prostate cancer.

Jules

Edited by member 11 Mar 2024 at 13:35  | Reason: Not specified

What criteria do you place on a scientific paper that makes it credible to you?

I am finding that there are very good areas of this forum where people support each other, pass along their stories and explain what happened to them, pass along questions that a person needs to ask.  I am also finding there are some areas where posters are passing off medical judgments.  Somewhere along the way, some posters here have lost sight on the fact that this is a support network, not an amateur doctors and nurses network.

"Your father probably has PCa"

"You won't have a PCa issue for 10 years"

"You will have to have these treatments"

This is all advice given in the last two months about

1)  A Person who has not had an MRI scan,

2)  A person who had an elevated PSA and no referral to a Urologist

3)  A person who had an elevated PSA, no DRE and no MRI. 

This advice was given through a combination of Google, anecdotes, and just plain irresponsibility.  Unlike a GP, or a clinician, or a nurse who will have to answer for mis-information and mis-diagnoses, and who will have a complete process to follow - posters here can post whatever they like without any repercussions at all.  

I am not saying this afflicts all posters.  Many are incredible responsible and restrained when giving advice.  Others, though, are sometimes like a bull at the gates - itching to respond (for genuine reasons of kindness) without much consideration for what they have just advised.  Whilst GPs and clinicians are not infallible, neither are some of the more respected posters here.  When your car is broke, you take it to a garage.  When you have a medical concern, just ask the mechanic because he also posts on here as a self-appointed expert.

Like I say, and this is my last post on both this subject and this forum (because I am genuinely angry at the blase attitude to giving advice), to anyone who reads this.  Talk to your GP, talk to the nurses on this site.   That's where you will get the best advice.  Whilst clinicians are occassionally wrong, posters here are wrong a lot more often.  

I wish each and every one of you my sincerest, heart-felt best wishes for the future.  I hope the scientists continue to make breakthroughs in treatments, in monitoring techniques, and in understanding that - sometimes - no action is needed other than monitoring actions.  I suspect PCa cases will keep rising as more people get PSA tests - but how many will need intervention?  Hopefully an ever decreasing number.

Take care.

Ady

Wow - I go away for a few days and all this happens!

Ady, if you are still reading, I agree with a lot of what you are saying. I regularly complain to the moderators or report posts when someone is giving unreliable or misleading information, and it is the reason that I will not engage in direct messages - all posts and responses should be published openly so that the cranks and trolls can be challenged.

In response to your specific question about diet and small boys - I have always been clear in my posts that there is no evidence that dietary changes in adult men will make any difference to getting prostate cancer, preventing recurrence when someone has had radical treatment. Many years ago, when I first joined this forum, a lot of the men were following the Jane Plant diet rigidly; it was often quoted because she was a doctor. In fact, she was not medically qualified but it didn't stop scared people from cutting out all manner of joys from their life. I tried to cut all red meat, dairy, etc out of my husband's diary but he cheated every time my back was turned so I gave up. It was when I asked the urologist about whether J was doing himself any harm by eating bacon sandwiches that he told us about the research on western diet and said the only thing that would have made a difference was cutting out meat & dairy before puberty. He pointed us to the main research sources.

If you are interested, look up the Prostate Cancer Research Foundation - they have been funding research on this since 2004 through Margaret Rayman of the University of Surrey. The research suggests as above - in addition, they suggest that some dietary changes might slow down the progression of advanced prostate cancer. PCRF has published a cook book which you can buy on Amazon - but they make the point that this is food for a healthy prostate, not for men with prostate cancer

https://www.amazon.co.uk/Healthy-Eating-Prostate-Association-Foundation/dp/1856268691 

Edited by member 12 Mar 2024 at 00:53  | Reason: to activate hyperlink