Can't sleep for worry

Hi Oliver.  I am interested in some of your possibly unconventional comments and would like to hear more, particularly on your attitude to hormone therapy. 

I too researched and refused Gadolinium.   IIRC Sloan Kettering stopped Gadolinium from 2015.   I refused Statins a number of years ago, and have never taken them.  I too have concerns with HT.

Have you had an MRI, if not why not?  I would think that is an important diagnostic step even with an unconventional approach to the possibility of PCa.  My PSA was 1.49 in 2018 (HOLEP in 2012) and now 13.37.  A recent MRI indicated a 14mm tumour.  In order to inform decision-making. I believe we require objective data, otherwise, we are flying blind!

D

Thanks Oliver for your input and point of view.  It's really hard to decipher all the information, digest it and come out the other end with definitive answers.  There are few conclusions I've drawn.  The first is do your home work, as you have.  Not ads in the Daily Mail, but hard statistical research and yes, absolutely, ask questions and question everything.  It's your body. 

Secondly, for virtually every bit of research I've conducted, there seems another paper to contradict the finding.  However, there also seems to be a general 'flow' of stuff that identifies trends of thinking. That's what I've been following.

Thirdly, the evolution of treatment is moving fast.  Super fast.  The radiotherapy I'm considering via relatively new equipment isn't widely available, yet everything I've read says that it will virtually replace conventional RT in the next 3 years - three years is nothing! 

Fourthly, while we search for definitive answers, the simple fact is there are none.  There are far too many variables and everyone's cancer is unique to them (this has been a hard concept for me to get my head around); there is no one-size fits all, which can make dissecting and applying information difficult and frustrating. 

Finally, common sense often prevails.  What makes sense.  What is logical.  As predators on the savannah, our ancestors didn't eat all that much refined sugar and custard creams (poor sods).  Plus while processing meat makes it more digestible (and tasty), the gut suffers for lack of a challenge.  So I agree with everything you've mentioned about diet. 

One thing that has been known for years and years is the power of positive vibes/thinking on long term prognosis.  You have an admirable attitude Oliver and you're right, you life is in your hands.  It's given me a lot to consider.  Cheers!

Hi Oliver J,

Fascinating stuff and well done on your weight loss. That's such a positive step forwards and it's amazing the benefits you get from eating well. . I was wondering, if you don't mind me asking how old was your brother when he died of prostate cancer and also how old are you? Also have you had any tests at all? CT scans ,MRI, Pet scan. If not are you not curious as to what's happening? How do you know if you have PC, was you told this? I find it interesting that you clearly don't want to know either way. 

Best wishes L

Hi Barry, Thank you for your response and enquiry, I feel just great every day, yes every day, its down to the complete lifestyle change, that my GP wasn't interested in, but its not him that has PC.

My brother was 66 yo when he died, I am 77+ but honestly I don't feel like it, still very active on a daily basis.

I have regular PSA tests ( 4 monthly ) and I always ask for more checks than the Dr's want to do, like Cholesterol, Blood sugar, Testosterone, which they are very reluctant to do, so I tell them don't bother  with my PSA then, you can tell my consultant, so they always agree, I am able to get all my results on line, of which I have kept a record of for over the last four years, so I am able to see what the trends are in my case. I have also kept a timeline of my record since diagnosis, of every occurrence in my case.

My GP referred me to a consultant after a high ( in his terms 6 reading ), after long discussions, I had a DRE, biopsy ( and that's another story ) and eventually an MRI, totally the wrong way round from what I now know, and I told them that was not the procedure as laid down by NICE ( the medical body that looks after service and patient care )

My PSA level of 6 has climbed up slightly over the years to just under 10 now, but I am not really concerned, as strangely, I have been able to reduce it by eating better foods, very little if any processed foods, no dairy at all, in it's many guises, no red met, filtered water, etc etc etc, sounds stupid i know, but it's a fact, medics just shrug their shoulders at me.

There is so much more in this story, like treatment plans, hormone therapy, medical options, but I can assure you, nothing will be agreed unless I am made fully aware of my options, and where anything may be done.

Please keep in touch, and take care.

Grahame

Hi Dedalus, thanks for your enquiry and interest.

I am not a medic, but when I question them on a specific top, they try to bluff me away, topics like: Diagnostic procedures, biopsies ( needle tracking ) hormone therapy, MRI scans ( with enhancement agents ) lifestyle changes, food options, and most important, what caused me to get this disease in the first place, which is the most avoided question of all, makes me think, they have no idea, well I just think I have.

We will never cure cancer with the attitude of the current medical profession, it takes on average 20 years to make the smallest of changes, so I will never see a cure, plus they can't afford to find a cure, the world would virtually collapse, withe financial implications there would be in the Pharma industries, the medical professions, etc, etc, so I do it my way, Its My Life in My Hands, and I'm very happy with that.

You ask about my thoughts on Hormone therapy, its not my thoughts, but the medics who have expressed the own ideas on the subject that I am saying to you, these professional medics spoke out against the system, and were kicked out of the profession because of their ideas.

Basically my research showed me that there was not one medical paper written in favour of HT but there was sixty three that condemned it, I ca see why, medics blame a high testosterone  level as being bad for PC, they say it feeds on it, Rubbish I say as do many medics, if it' s bad why are so many young males full of it, that's why I like to have mine checked, to keep the level up, Its all down to professional I know best attitude, but just sometimes they can be wrong, and I believe they are with this subject, but I advise always to seek a medical opinion, but ask questions, and make your own decision.

Keep in touch, and take care.

Grahame

One of the things that I really appreciate about this forum is the varied information I find.  Grahame, you said, 'Seek a medical opinion, but ask questions and make your own decisions.  I couldn't agree more.  I would only add, 'do your research,' which you've obviously have.  I feel fortunate that, for the most part, the consultants I've seen have been pretty good in my estimation.  They have always been straight forward with me, and while I haven't had their years of experience and education, I have a fine-tuned common sense.  In their field, I think they need to be very confident, but not crossing over the line into arrogance.  I know some of you have run into those who have crossed this line and it must be frustrating.  We are, of course, talking about our bodies - we must have a say.

One of the things I've noticed about your posts, Grahame, is a really robust positive attitude and confidence in your choices.  I admire this as I'm wobbling a bit at the moment with the realisation of future treatment - almost certainly radiotherapy - is on the close horizon, which I just found out on Friday. I'm still digesting this.

Years ago, I used to create fundraising advertising for the Imperial Cancer Research Fund before it merged with another organisation to form Cancer Research UK.  At that time, I knew from working with many people with cancer that perhaps the biggest thing you can do for yourself is surround yourself with a positive attitude.  This in itself can be as equal most treatments and without it, virtually all treatments will not work as well or even fail.  The lifestyle you've adopted and your diet regime are amazing.  I hope that I can achieve some of the same things.  I also have a lot of faith in the people treating me.   

I appreciate your thoughts and experiences, as I do all the others since I started this thread.

Cheers, Joe

Hello Joe

Joe2005 said:

the biggest thing you can do for yourself is surround yourself with a positive attitude. 

I posted that comment, not quite word for word on another thread today. That to me is half the battle.

Thank you that man - well said!

Best wishes - Brian.

Hi Grahame,

So you did have a biopsy, what were the results of that - Gleason score?  I think 77 is a good age to be managing your own treatment, especially if you have a slow growing cancer that is small and hasn’t spread out of the prostate. Why mess with your body if you don’t need to. But I think you do need to be very informed about exactly where it is and what it’s doing. I think anyone reading your journey needs to also understand that some cancers are very fast growing and they need to seriously question whether this is the right thing to do for them and their cancer. Like you and others say, information is key and quality information, and not unproven hypothesis that are easy to latch onto. I do agree that there probably is an element of over prescribing or surgery at some lower levels which could possibly be monitored for a bit longer, but there’s also people here that have been monitored for a while, thinking their cancer is dormant and then finding it has silently gone rouge and escalated, that is a terrible outcome. So I guess consultants will lean towards precautionary treatment because of this. They have to make a judgement call on what they are seeing with the tests and also their experience. For someone like me, an “informed” but not medical person I definitely would do what my consultant suggested, but I would also look up their qualifications and the treatment and other choices available for discussion. 
By what you are saying has your consultant suggested hormone treatment ? 
sorry lots of questions, but I do find other people’s opinions interesting, especially if they’ve decided to go against medical advice. 
L

Hi Joe,     Thanks again for your response, I take your point about having a positive attitude, and surrounding yourself with people who are able to give you support, I have looked into this as well, and I have an opinion, as you may expect.

Having a positive attitude depends in my eyes as being in a good frame of mind and wellbeing, and with all what is going on in each of our worlds, which is entirely different to each other, this is a very difficult position to get yourself into, it's not easy, but once it gets there, you feel just great, which is exactly where I have been for the last 3 years, and why I want all others in the a similar situation  to get where I am, it's just great, but hard, emotional, tiring, but well worth the effort.

May I ask what age you are Joe 

I sometimes wonder why discussions like ours cannot be read by others on this forum, in similar situations, as I would really like to get my thoughts out there, and get others into a different mind place, to feel good and really enjoy life again.

Take Care,    Grahame

Hi Oliver

It's easy to get into a stew when things like 'urgent MRI' and such are mentioned by doctors, but your PSA isn't so high and I think you said you have a single lesion - is that right?

There's other treatment options for such, which lower the side effect risks substantially, such as IRE. If it ends up where you are a candidate then push your urologist hard to look into it for you, it seems to me they often over-treat.