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Possible biochemical recurrence.

User
Posted 27 Sep 2021 at 23:27
How long is he suggesting you have the bicalutimide for?

John was in your position when he was almost 52 - okay, he hated bical but it was only for 6 months, it didn't stop him playing rugby or cycling or going to the gym and here he still is, with a PSA of 0.1 ten years later.

Some people find the bical side effects more distressing than ADT, others find the opposite. It isn't ideal but as a young man, your focus might perhaps be on getting to be an old man?

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

User
Posted 28 Sep 2021 at 06:53

 

He is talking 2 years of bicalutamide oral.

 

 

User
Posted 28 Sep 2021 at 06:58

Originally Posted by: Online Community Member
How long is he suggesting you have the bicalutimide for?

John was in your position when he was almost 52 - okay, he hated bical but it was only for 6 months, it didn't stop him playing rugby or cycling or going to the gym and here he still is, with a PSA of 0.1 ten years later.

Some people find the bical side effects more distressing than ADT, others find the opposite. It isn't ideal but as a young man, your focus might perhaps be on getting to be an old man?

Not sure if the formatting of this sit appears weird for everyone, but my earlier response seems not to be in order.

The onco is talking bical oral for 2 years.

He played down sides and said that I would maintain a sex life. You, however, suggest that John had a rough time.

Which of the many stated sides did John suffer?

Edited by member 28 Sep 2021 at 07:04  | Reason: Not specified

User
Posted 28 Sep 2021 at 08:42
Piers

Got your PM. I can't reply as I don't have sufficient privileges. If you want to send me your phone no I'll get you the details.

User
Posted 28 Sep 2021 at 10:02
I am currently running at about 1/3 your PSA 0.063. I have just had the letter from my second opinion at the Royal Marsden.

The letter stressed the importance of 0.2 being the trigger for salvage therapy and that this is based on data from the Radicals trial that shows no benefit to going any earlier. So it looks like the original choice many years ago of 0.2 for BCR has stood the test of time. When I see my usual Onco in 8 weeks (the one who recommends treatment before 0.1) I will ask him his opinion of the Radicals data. I will also ask him why he recommends prostate bed + lymp but the RM said probably prostate bed only unless the scan shows lymph involvement.

Re scans both my Onco opinions recommend a PSMA scan but acknowledge it may not show anything.

User
Posted 02 Oct 2021 at 09:03

Okay, I had a consultation with the surgeon yesterday and discussed with him the advice of the onco.

He said that he he didn't agree with the onco and that his advice is out of date. There is a 1/3 chance that my disease is already metastatic and, if it is, blasting away at the prostate bed and administering hormone treatment will achieve nothing outside of making me miserable.

Evidently what happens is that men follow that course of action and see their PSA drop to undetectable, only to see it rise again after the cessation of HT, because the PSA wasn't ever coming from the prostate bed.

He is still saying that I should have a PSMA PET scan at 0.2 and hope that it shows something. If it does, target the area. If mets later present elsewhere, have a go at those. I won't have had a lifetime's dose of radiation to the pelvis. If it shows nothing we need to talk again.

He is discussing my case with a MDT this week and will report back.

I also asked him what the natural history of my disease would be without treatment. He said that if I would otherwise have lived my normal lifespan, that the cancer would at some point overtake me an kill me. But it would probably be many years before that happened.

Since the meeting I have pondered what would have happened if I had never had an RP. How long would I have lasted? How long might I last if I take no further action?

I am not yet persuaded that "survival at any price" is the correct course of action.

User
Posted 02 Oct 2021 at 10:57
'Since the meeting I have pondered what would have happened if I had never had an RP. How long would I have lasted? How long might I last if I take no further action?

I am not yet persuaded that "survival at any price" is the correct course of action.'

I guess a number of us wonder whether we did the best thing, particularly where our original treatment does not entirely eradicate our cancer. The surgeon who headed the MDT in my case told me he would remove my Prostate if I so wished but thought I would be better off having RT as he doubted he could remove all the cancer. I took that advise and for a couple of years or so the result looked good. However, a small tumour was subsequently located in my Prostate and I began to wonder if I had gone for surgery, perhaps supplemented by RT, I would have avoided the need for HIFU which now needs to be repeated. Of course all this is academic because we are where we are and speculation can make you upset about your treatment choice so really serves no purpose.

As to survival at any price, this will depend on the way the individual sees it and maybe personal circumstances. I am now a full time carer for my wife and she would not want to go into a home so perhaps my threshold would be further down the line than it might otherwise be, although I do naturally pusue treatment options to still enjoy some of lifes pleasures. Then I know what a rotten way to go death can be from PCa and the time leading up to it. Better to die of a stroke or heart attack or perhaps something else!

Barry
User
Posted 02 Oct 2021 at 11:26

Dying of something else is definitely a consideration!

I am slightly concerned about messing up some of my remaining years of vitality with  HT, when all I would be missing is my twilight years when my health may be crappy anyway.

 

User
Posted 02 Oct 2021 at 11:47
I am a little suspicious of your urologist - sounds to me like a man in denial that he could have left a bit behind. It will be interesting to see what the MDT comes back with. On the other hand, it was strange that the onco recommended bicalutimide rather than ADT - perhaps they are both a bit stuck in their ways.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2021 at 12:08

I think the bicalutamide plan was to preserve as far as possible my sex life.

The urologist said however that it would still sooner or later put paid to any plans of rumpy-pumpy.

You may be right about the urologist. A surgeon once said to me “Do you know the difference between a surgeon and God? God understands that he is not a surgeon.”

 

 

User
Posted 10 Oct 2021 at 09:26

 

Ok, I spoke to the surgeon last week and he took my case to the MDT.

The consensus is that I should not have radiotherapy to the prostate bed and instead wait till my PSA breaches 0.2, at which point I get a PSMA PET scan.

Why? Because my histology suggests a 35% probability of metastatic disease. Blasting away at the prostate bed and chemically castrating me may only serve to make me miserable, without benefit.

To be honest, I have throughout favoured a "do as little as possible" approach and the above continues with the theme.

I asked at point did the cancer metastisise(sp?), he said pre-surgery because the tissue removed was margin negative. I don't know enough about the subject to know if that is absolutely guaranteed. Intuitively, I can see how it may not be.

 

 

User
Posted 10 Oct 2021 at 12:24
If you were margin negative, the cancer must have already spread before surgery.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Oct 2021 at 17:04

 

What are the chances of it spreading as a result of the biopsy?

I ask because for some reason the surgeon who did it took 45 cores. One of the surgeons I spoke to about the RP commented "what the **** did he do that for?". I am aware that track seeding is a risk with biopsies.

 

 

User
Posted 10 Oct 2021 at 17:24

There is very little evidence to support the idea of needle tracking from TRUS biopsy. There are a very small number of alleged cases in USA as a result of template biopsy but I don't think anyone has been able to prove that it actually happens. If it did happen, the patient would have cancer cells along the path that the biopsy needles had travelled, not elsewhere in the body like lymph nodes.

You have never mentioned what kind of biopsy you had but 40-50 cores is not unusual for a template biopsy. 

Edited by member 10 Oct 2021 at 17:28  | Reason: Not specified

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

User
Posted 10 Oct 2021 at 17:37
So a 65% probability that salvage therapy will give a durable remission, seems to align with the nomogram scores for your post of figures.

User
Posted 10 Oct 2021 at 17:43


I had a template biopsy.

Yes, 65% was what I read.

 

Edited by member 10 Oct 2021 at 18:05  | Reason: Not specified

 
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