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Post RP and SRT journey - July 3023 PSA test update

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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!

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

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