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Post RP and SRT journey - July 3023 PSA test update

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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

User
Posted 25 Jan 2019 at 22:12

Originally Posted by: Online Community Member


Also lets not forget the good news out there


Keep taking the aspirin!


 



Husband was asked about joining the ADD Aspirin trial following his RARP but wouldn't have known if he was on a placebo. He decided to just take it himself anyway so fingers crossed. Takes 150mg.

User
Posted 25 Jan 2019 at 22:19

The reason my PSA got to 0.7 was 1) ridiculously rapid rise 2) my oncologist wouldn’t let me start HT until I had my PET scan so that it captured as much as it could as HT would reduce activity seen on the scan.


He is a particularly depressing guy hence why my wife and I call him Dr. WTF!


I am going to prove him wrong and as he said it will make his day if all this treatment has worked!


 


 

Ido4

User
Posted 26 Jan 2019 at 01:18
I know of Horan's theory and I hold with some of it (but not all). I think it is absolutely right that men have been sold a line with the promise of cure - no responsible oncologist ever talks about a cure for cancer; that is just a word peddled by lazy journalists. Lots of men seem to achieve a full or at least sustained remission but I suspect that if men lived long enough, most would have a recurrence sooner or later. Take my dad; 60 at diagnosis, successful RP, unremarkable pathology, undetectable PSA (ultrasensitive) for 13 years and then a recurrence. Doubling time of around 2 years, and now 82 years old, Mr P estimates that it will be 20 years before it kills him.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Jan 2019 at 04:10

I think my issues is that he appears to discount any radical treatment as pointless. Blanket polarised opinions like that tend to smack of cult or cash. It causes fear and distress.

Edited by member 26 Jan 2019 at 04:23  | Reason: Not specified

User
Posted 26 Jan 2019 at 10:58
I agree that he is depressingly negative and probably financially motivated :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Jan 2019 at 11:51

Thanks for that Lyn. I would be happy for similar stats for my husband to your dad's but yes I think the natural history of this disease seems that it can never truly be " cured".


Still at least remission for many years is good news for many although we are all living with the fear of the " if" and " when" it will return.  Husband ok about it but I struggle with the PSA testing anxiety and that  seems to be getting worse rather than better. Think I will just have to accept this is the new normal.


If/when the cancer returns we will think very seriously before jumping into any further treatment and all its further side effects depending on his age at the time. Quality of life will come first and not longevity at any cost.


We can only hope better, kinder treatments come along for everyone and one day Prostatectomy and possibly RT/HT are consigned to the history books.


 


Regards


Ann

User
Posted 26 Jan 2019 at 13:30
If we think of PCa as being inherently a disease of a malfunctioning immune system, why shouldn't it return, if nothing is done to boost the immune system? I start immunotherapy next week, so here's hoping!

AC
User
Posted 26 Jan 2019 at 14:45

Immunotherapy does seem to be showing promising results for certain cancers although not in everyone.


But yes fingers crossed for you. Hopefully in the future they will get it to work for everyone.


Best Wishes


Ann

User
Posted 26 Jan 2019 at 15:25

I hope the immunotherapy works well for you AC. It has certainly shown lots of promise.


I can't help thinking that having been on immunosuppressants for well over thirty years due to arthritis has contributed to my PC.

Ido4

User
Posted 26 Jan 2019 at 21:42
With me it was stress - work, mental health, bereavements and whatnot. Trying to work on that but of course trying not to be stressed in this boat is a lot harder !
User
Posted 30 Jan 2019 at 15:46
Replying in my own thread to avoid hijacking

Coming up to my first post srt review is turning out to be more stressful than I thought it would be. My brain is doing its artful thing of painting unhappy results because of all the unknowns. It seems like ones brain can be a bigger enemy that this bloody disease sometimes.
User
Posted 30 Jan 2019 at 15:56

When is your review? Hope all goes well.


Ian

Ido4

User
Posted 30 Jan 2019 at 16:02
Bloods Friday

Review 12th

Am bouncing between optimism and pessimism
User
Posted 30 Jan 2019 at 16:24

Good point re hijacking so I have copied my post here and deleted from Jaypeeca's thread


"Your mucinous elements are in a bucket. If you had a recurrence, you should remind the onco that you had some elements of mucinous but the question would be whether it was the mucinous or the adenocarcinoma that recurred. Recent data suggests that mucinous is not as aggressive as they used to think, but might need a different approach to keep it under control. Men who have adeno with elements of small cell / mucinous / basal cell or whatever would have the normal treatment for the adeno plus consideration of alternatives for the rarer type."


"They would have to find a met and biopsy it. You won't hit your nadir until about 18 months post-RT so I don't think anyone is going to be thinking about kitchen sinks at this stage though." 


 


It is going to be a long 12 days .....

Edited by member 30 Jan 2019 at 16:25  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Jan 2019 at 17:05
Thanks Lynn

It’s a horrible limbo and I’m struggling to look to be long term things I need to pick up because “what’s the the point?”

I’ve had a few really dark moments where it would be easier if I was in the bucket along with the bandit but they don’t last that long.

Uncertainty is my kryptonite. My poor counsellor is going to earn the crust this week.

I also feel guilty as by no means am I in the “having real challenges” group.
User
Posted 30 Jan 2019 at 19:48

So sorry you are feeling like this. Totally understandable. The waiting is dfficult.


 Carpe Diem! (easier said than done)

Ido4

User
Posted 30 Jan 2019 at 19:51
It’s hard realising how much of a coward i am
User
Posted 30 Jan 2019 at 20:47
You are not a coward, far from it. PSA anxiety is a real thing, some learn to live with it but few could ever claim that they have totally overcome it, even many years later and regardless of how rational it is to think there might be a rise.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Feb 2019 at 14:19
T - 24 hours

I decided to go by myself because my wife will find it difficult to get off work. She kept asking ‘do you want me to go?’ but I did not want to cause her hassle. I hope this was the right thing to do as I know she wants to support me and feels better if she is involved. I just hope I don’t let her down with bad news.
User
Posted 11 Feb 2019 at 15:28

I hope the news is good. 


Ian

Ido4

User
Posted 11 Feb 2019 at 19:14
So do I :)

At least wifey can now make the session.

P
User
Posted 11 Feb 2019 at 21:00

Good luck for tomorrow Pete


 Bri

User
Posted 11 Feb 2019 at 21:40
Cheers
User
Posted 11 Feb 2019 at 22:09

Best of luck for tomorrow. My first appointment post SRT was the usual PSA nightmare scenario but, thankfully, it proved to be a positive reading for me. I next see the Urologist in March and already I’ve started the worrying process again. It’s perfectly natural to feel this way. As said, fingers crossed for you.


Dave.

User
Posted 11 Feb 2019 at 22:48

Good luck. our stories are weirdly similar. been there with srt and worn the same t shirt if worry. have bags of experience in dealing with it (both well and not so). any qs just pm me. good luck again 


 


bazza 

User
Posted 11 Feb 2019 at 23:15
Good luck PP
User
Posted 12 Feb 2019 at 15:19
Argh!!!!!!!

So my appointment today was cancelled and rebooked and that fell through the cracks. Another two weeks now 😢
User
Posted 12 Feb 2019 at 16:25

How bloody inconvenient and distressing. 

Ido4

User
Posted 12 Feb 2019 at 16:29
What a pxxxer
User
Posted 12 Feb 2019 at 16:49

These things happen -  Stay Strong!

User
Posted 12 Feb 2019 at 16:56
Me and the missis had a grump and then just shrugged it off.

It’s comes of dealing with multiple people and departments and them never being clear on things like handoffs.

Hey ho
User
Posted 12 Feb 2019 at 17:21
If you phone the GP practice, your PSA result should be on the system.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2019 at 17:39
I have access to the online system - would it be on there?
User
Posted 12 Feb 2019 at 17:44
If your GP has approved access to medical records, yes, but if not, as in my case, no! It seems that it is down to the individual GP whether they permit patients to exercise their right. Shocking, as I'm sure Bollinge would agree!

AC
User
Posted 12 Feb 2019 at 17:57

Thinking on it all I remember seeing was prescriptions so I think mine are locked.


I don’t think I have the courage to ring up after today because today took a lot out of me and if the results show I’m a dead man walking I’d rather talk to the onco right away.

Edited by member 12 Feb 2019 at 21:10  | Reason: Not specified

User
Posted 26 Feb 2019 at 16:35
PSA 0.07 and T 14 four months after SRT. Which means this is an unmasked reading not yet at nadir. I’m hoping it should be the same or better in four months.

Thanks for all your kind words and support. Time to focus on getting fit and whatnot.

PP
User
Posted 26 Feb 2019 at 16:55

That's good news. What is testosterone normally?


As you say time to move on and get fit etc.


Ian


 

Ido4

User
Posted 26 Feb 2019 at 16:56
Cheers

I was right at the bottom end for normal males. My small prostate is a correlation with this.

Onwards and upwards. Crossing fingers tou get similar good news 🤞👍
User
Posted 26 Feb 2019 at 18:09

PP


Great news, a good place to start from after SRT,  long may it continue. Put PSA to the back of your mind and try living a stress free life.


Thanks Chris

User
Posted 26 Feb 2019 at 18:36
This cloud has moved on.

Splendid news.

Pleased for you.

dave

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

 
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