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Post RP and SRT journey - July 3023 PSA test update

User
Posted 23 Jan 2019 at 13:12
Interesting. Going to look at ginger supplements as an alternative
User
Posted 24 Jan 2019 at 18:48

On my other forum someone posted that they had cribriform elements like I do and found an extremely pessimistic report and they were panicking like mad saying there were all sorts of reports that came out in 2017/18 giving gloom and doom over it.

I panicked at the time but Lynn talked me down by saying the research simply meant that 3 goes to 4 with cribriform.

This report suggests it is worse and is comparable to intraductal.

https://journals.lww.com/anatomicpathology/Pages/articleviewer.aspx?year=2018&issue=01000&article=00004&type=Fulltext

Thoughts?

I'm kind of in an angry resigned place at the moment just waiting for my first test knowing that whenever I think I am getting in a better place Karma comes and kicks me in the goolies.

P

Edited by member 24 Jan 2019 at 18:57  | Reason: Not specified

User
Posted 24 Jan 2019 at 20:13
Maybe time for the mild booze session mate

Bri

User
Posted 24 Jan 2019 at 21:18

Already started 

User
Posted 24 Jan 2019 at 21:28
It is a literature review (written 12 months ago) of previous research, all of which must be at least 2017 and mostly older than that. It doesn’t say anything different to what we would expect; cribriform is a significant finding at biopsy which should be reported on pathology reports because it means any G3 should be treated as if it was a G4 when determining treatment v AS. It seems more pathologists do mention it now but the researchers think all pathologists should include it if present.

There will have been other researchers with other findings in the year since this report was written; the trouble is that if you want to find data to argue a particular point you will find it out there somewhere. My previous comment remains; you weren’t a 3+3, you didn’t opt for AS and the cribriform was removed from your body some time ago now.

Fingers crossed for your results x

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

User
Posted 24 Jan 2019 at 21:42

Thanks Lynn

Voice of sanity. I think  the OTT Daily Mail phrasing got under my skin a bit. Thanks for the Giibbs style slap round the back of the head to get me back to sanity 😂

Pp

User
Posted 24 Jan 2019 at 22:08
I can afford to be nice this evening, I have had a great day scaring the tihs out of head teachers
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Jan 2019 at 22:10

Originally Posted by: Online Community Member
I can afford to be nice this evening, I have had a great day scaring the tihs out of head teachers

 

Nearly as good a cool job as being Batman 😂😂

User
Posted 24 Jan 2019 at 22:24

I probably look better in a gimp mask than he does ... swings and roundabouts though as his car is better than mine

Edited by member 24 Jan 2019 at 22:26  | Reason: Not specified

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

User
Posted 24 Jan 2019 at 22:27

Matt black spray paint, tinted window plastic and a couple of fireworks tied to your exhaust and you will be good to go. Don't forget to shout "Dinner Dinner Bat Lynn" out the window as you chase the head teachers wink

User
Posted 24 Jan 2019 at 23:53

Originally Posted by: Online Community Member
Interesting. Going to look at ginger supplements as an alternative

Re the aspirin apparently you are either sensitive to it (stomach probs and eventually bleeds) or you are not.  That same BBC report said it reduces the risk of some cancers by nearly 50%.  

Re the ginger I am hooked on black tea with a quarter teaspoon of ginger and tumeric. Also seems to help suppress my appetite as I am trying to lose some weight having recently put back all of the stone and a half I lost on my sepsis diet! Interestingly loosing weight is I believe the single best thing you can do to improve your odds with PC.

User
Posted 25 Jan 2019 at 12:56

I had intraductal cancer in my prostate and like you i find it really frustrating when a urologist or oncologist says that the presence of  IDC or cribiform or both makes our prognosis worse but they can't quantify it.

I am seriously beginning to wonder if my PC was already metastatic at the point of prostatectomy.

I guess the bottom line is no-one really knows the answers to theses rarer cancers of the prostate so Carpe Diem! (whilst being scared histelss)

 

Ido4

User
Posted 25 Jan 2019 at 16:33
Ian

I think as Lynn says the research is all over on a lot of these types. In my other forum one of the wise ones pointed out that given the current state of knowledge each form of cancer / presentation gets the best treatment available at any given point. I realised (and forgot) this a while ago in that my staging was done based ON my presentation not merely being given a staging and thern having a load of random bad possibilites on top. We are in a time of improvements as well. This BBC report https://www.bbc.co.uk/news/health-46986800 highlights how things are improving. If you search on "cancer 2025" we are going to see huge advances by then.

User
Posted 25 Jan 2019 at 18:03

Originally Posted by: Online Community Member

 

I am seriously beginning to wonder if my PC was already metastatic at the point of prostatectomy.

 

I read a very scary book recently by an old timer American urologist named Anthony Horan called " Overdiagnosis and Overtreatment of Prostate Cancer"  published in 2012 .( On Amazon)

He cites lots of research and proposes that by the time Pca is diagnosed it has already been there 10 - 15 years and has already metastized. He reckons treatment only gives an extra 18 months and it is only the slow progress of most types of the disease that allows longevity in most men regardless of treatment. If he is to be believed my husband has an average of  about 11 remaining years. And here was us hoping for permanent remission.

I was hoping to find something on the web discrediting him but can't find anything. He is not a fan of  Prostatectomy or Radiation and believes the disease should be treated systemically from the outset.

He also thinks Prostatectomy only became acceptable to men after nerve sparing surgery was developed due to the possibility of retaining continence and Erectile function. Before that most men shunned it due to the then certain side effects. He thinks men have been misled into thinking they can be cured and there is no such thing as " early" Pca.

Worth a read but wish I hadn't.

 

Regards

Ann

 

Edited by member 25 Jan 2019 at 18:13  | Reason: Not specified

User
Posted 25 Jan 2019 at 18:31

Peggles

 

“Old timer” ....

I suspect this chap has a band wagon / axe to grind because there are plenty of people who cruise on after treatment with NED. He has an ally in someone called Bert Vorstman who owns health care stock as a vested interest somewhere along the line. Both are urologists not oncologists so bear that in mind. Sounds more fringe than not.

I don’t buy this because particularly in the UK if they thought radical treatment was pointless they would not do it as unlike the US it is a cost centre. The US is a profit centre sone could see some motovation there but wven so, 9/10 conspiracies are in the mind of the originator.

Edited by member 25 Jan 2019 at 18:38  | Reason: Not specified

User
Posted 25 Jan 2019 at 19:09

Originally Posted by: Online Community Member

Peggles

 

 

I suspect this chap has a band wagon / axe to grind because there are plenty of people who cruise on after treatment with NED. 

I don’t buy this because particularly in the UK if they thought radical treatment was pointless they would not do it as unlike the US it is a cost centre.

That makes sense but it did frighten me a bit as some of what he says seemed feasible. Thought he contradicted himself  though when he said he does cryotherapy on his patients when they want something doing. What would be the point in that if he believes Pca  metastizes so very early and can' t be cured other than to  take their money. Seems hypocritical.

Thanks feel better now -  back to believing we did the right thing.

Best regards

Ann

Edited by member 25 Jan 2019 at 19:22  | Reason: Not specified

User
Posted 25 Jan 2019 at 20:38
Avoid google. Lots of crackpots out there. It’s true that most of us have had Pca lingering around for some years before dx. But I very much doubt the NHS would spend so much on the treatments they do if the outlook was so bad

Bri

User
Posted 25 Jan 2019 at 20:45

Hi Ann, i was told by my urologist i had cancer of the prostate for many many years before diagnosis. 

It’s a scary thought isn't it. I read that the ”capsule” of the prostate is like a piece of rice paper, so very thin. Once the cancer gets through that it's out.

Best wishes,  Ian.

 

Ido4

User
Posted 25 Jan 2019 at 21:26
@Peggles / Brian

Anyone who attempts to debunk an entire clinical establishment and methodology and then offer their services for treatment as the golden alternative ... need I say more? Also why did he not make these claims about cancer in general? Hmmmmmm.......

@Ian

You had a urologist not an oncologist saying this. Bear that in mind. Also if it was that serious why did they let your PSA rise to .7 (?) before SRT? One of my pals on a US PCa board calls his urologist Mr Eyore with his oncologist channeling Tigger in terms of optimism. Every time I’m on the ledge over there I get told to expect the best because it can happen. We just need to learn to think like that.

User
Posted 25 Jan 2019 at 21:31

Also lets not forget the good news out there


https://www.independent.co.uk/news/health/cancer-survival-painkiller-ibuprofen-aspirin-medicine-drugs-head-neck-study-a8746526.html

Keep taking the aspirin!

https://bigthink.com/surprising-science/therapy-turns-cancer-fat-cells

Something something cancer related to stem cells?

Edited by member 25 Jan 2019 at 21:44  | Reason: Not specified

 
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