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Real Outlook?

User
Posted 29 Sep 2020 at 09:21

This is my first post and I’m hoping to get some ‘real life’ comment on my situation. I was first diagnosed in February 19 ( psa 7.9, Gleason 4+3) and had a RP end of April 19. The operation went fine other than on review in July 19 my psa had not dropped to zero and was 0.06- more alarmingly the involvement of one lymph node was confirmed ( no extracapsular extension ..). Referred to oncologist for review and psa rose to 0.23 by October. Started on Bicalutamide to suppress the situation and psa dropped below 0.1 and has stayed at that level.

As an aside I met with three oncologists and have chosen the one that I felt related best to my concerns and situation .

Covid delayed things a little but in July completed a course of salvage radiotherapy on both prostate bed and lymph nodes ( fortunately this all went well too and I have very little side effects). I reached the milestone of 60 years old in July too.

My question for this group is what really is my outlook. I ask this not from a position of morbidity but with a young family, planned home move, etc I want to make the most informed life decisions.

If I’m likely only going to be around for say 2-3 years I want to make the best of that time and make all the provisions to leave a good lifestyle for my family.

Any answers really appreciated...

 

 

 

 

 

 

User
Posted 29 Sep 2020 at 09:37
Well you can pretty much guarantee 5 years regardless of the success or not of your salvage therapy.

If your salvage therapy is successful then you will definitely die of something else unrelated to PC

User
Posted 29 Sep 2020 at 09:53

Memorial Sloan Kettering Cancer Center in the US have a set of nomographs for predicting this sort of answer, based on their data.

Big warning here though. Do think very carefully if you actually want to know these predictions before you start. Don't do them out of idle curiosity. People often wished they hadn't done them afterwards, so think carefully about it first.

https://www.mskcc.org/nomograms/prostate

I think the question you are asking is "Risk of Dying of Prostate Cancer in Men With a Rising PSA After Radical Prostatectomy".

Another one might be the "Salvage Radiation Therapy" one. It gives you the chance of no recurrence in 6 years, which is not quite what you're asking.

The "Male Life Expectancy" one can be interesting too, how long you would have lived without any treatment. In theory, you can't to any worse than this even if you have been treated. (This is usually used to decide if it's worth treating someone at all who has other comorbidities they are likely to die from.)

User
Posted 29 Sep 2020 at 12:23
John had a very similar situation to yours, except the spread was to the bladder rather than a lymph node. 8 years post-salvage RT his PSA is bobbing around 0.1 and (apart from when he sees the oncologist for review) the fact that he used to have prostate cancer is a distant memory.

The biggest problem you may have is getting life insurance if you need to re-mortgage to move house.

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

User
Posted 29 Sep 2020 at 16:40
I found the Male Life Expectancy quite interesting too. Worse case scenario and all that. But I agree, it's a not a place to go clicking if you are anxiously information gathering on a high risk diagnosis.
User
Posted 29 Sep 2020 at 20:31
Cancer progresses in some more quickly than others and can respond to treatment in different ways too. There are also more and better further down the line treatments now. I doubt an onco can predict reliably on remaining years for an individual at so early a stage. Some have been pressed to do so and have been shown to be well out. There are men still with us who can testify to this. In situations where all know treatments have failed, an onco can give a better idea but that seems a long way off for you.
Barry
User
Posted 30 Sep 2020 at 08:00

Thanks all for taking the time to reply - the worrying numbers for me are that my psa never dropped to zero post-op ( about 10 weeks after it was 0.06). It then rose quite quickly to 0.24 around six months post OP. I have down hours of research and it seems that psa doubling time is the real litmus test of scale of the problem??
To me it feels like that outcome is quite binary i) if the disease is confined to the pelvic area then the salvage radiotherapy has given me a reasonable chance of cure ii) if there are micro mets that have not yet been seen then I’m on my way to the departure lounge.....

User
Posted 30 Sep 2020 at 10:24

M

When diagnosed nearly 7 years ago at 62, with similar stats, my consultant said " if we do absolutely nothing you could still be here in 10- 15 years. You might not even be at the airport yet.

Thanks Chris

User
Posted 30 Sep 2020 at 11:30
We are all on our way to the departure lounge it's the way we make the journey that's important!!

You have a good shot at a complete remission with SRT unfortunately you won't know if it's been a success until you stop the hormone therapy.

User
Posted 30 Sep 2020 at 11:53

Originally Posted by: Online Community Member
Thanks all for taking the time to reply - the worrying numbers for me are that my psa never dropped to zero post-op ( about 10 weeks after it was 0.06)

 

PSA is never zero - there are tiny amounts produced in other parts of your body. 0.06 is less than 0.1 which makes it undetectable as far as the NHS, NICE & EU guidelines are concerned. It certainly doesn't indicate future problems The fact that it rose over 0.1 is what matters plus, as you say, the doubling time.  

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

User
Posted 30 Sep 2020 at 13:32

I always suggest men try to get a scan before starting salvage radiotherapy, and at your PSA level, that would need to be a newer PSMA PET scan. This is because some research showed 40% of people about to undergo blind salvage radiotherapy had their radiotherapy plan changed as a result of having a PET scan first, i.e. it found the mets somewhere the blind radiotherapy would not have treated.

One of my pet peeves is that patients don't get offered appropriate tests and treatments that their own treatment centre doesn't offer, so centres which don't have PSMA PET scans are less likely to use them to diagnose patients. Salvage radiotherapy is perhaps something you should consider being referred to one of the main cancer centres for, if your centre doesn't have the capability itself or offer to send you to get a PSMA PET scan somewhere else.

User
Posted 30 Sep 2020 at 14:12

Andy 

Not just that scans are not offered , but refused even when you have the funds or insurance cover to pay for them in other locations. 

Things are always moving on but three years ago I was told if had a scan and anything was found out side the prostate bed, SRT would not go ahead. Perhaps a misjudgment but I went ahead without a scan and I still have a rising PSA.

Thanks Chris

Edited by member 30 Sep 2020 at 14:13  | Reason: Missing word

User
Posted 30 Sep 2020 at 16:03

The scan might sometimes show radiotherapy won't be curative, in which case you can avoid the side effects for no benefit. It might alternatively show it's in the pelvic lymph nodes, at least some of which can be included in the treatment field, but are often not included in a plain prostate bed treatment.

It is also possible to get some hints of the location sometimes from the prostate histology, and from the pattern of PSA levels since the prostatectomy. Given you only get one shot at pelvic radiotherapy (at least to a first approximation), I think it's important to be sure it's hitting the correct target if at all possible.

User
Posted 30 Sep 2020 at 16:08
I had a recurrence under a year and had SRT + HT. Similar ish numbers but no lymph involvement. A year later I am in remission (<0.1). The numbers bumped up and down but look good now.

The point is that the actual numbers and timelines are only a vague guide to what may happen. Keep fit and healthy in mind and body, enjoy life and your family, do your tests and ony worry about it when it becomes a worry.

As Lynn and others will tell you, I spent ages down the rabbit hole of scientific papers and what ifs and it did bugger all good except make me ill with worry. Take it one day at a time.

User
Posted 30 Sep 2020 at 18:36

Thanks for all the feedback - giving a bit more information I have actually 3 psma pet CT scans

1) pre the RP small focus of activity on 8th rib ( not present on subsequent scans?) March 19

2) after RP equivocal uptake 6th rib Oct 19

3) Feb 20 equivocal uptake seen in October no longer visible

the last two scans mention an area of subtle sclerotic change

does this throw any further light on the situation?

User
Posted 01 Oct 2020 at 01:40
I had a similar diagnosis to you, but fortunately my PSA is undetectable, two and a half years post surgery - so far - although my hospital only tests to 0.1.

Yes, we all looked at the MSK prognostication Nomograms, which don’t augur well in my case at the fifteen year level, at which point I would be 79. The top prostate cancer oncologist at the Royal Marsden Hospital told me I won’t die of it.

I think you have done all the right things. Three PET-PSMA scans? Did you pay for them or were they on the NHS? Were any of them Gallium-68?

I think you will be around your young family for a long time to come, and wish you the best of luck.

Just avoid that bloody Coronavirus!

Cheers, John.

 
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