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3rd (now 4th) PSA increase

User
Posted 11 Jan 2017 at 17:25

As my profile shows PSA levels have been up and down but always under cut off point of 2.


Latest PSA is 1.18 which I thought was pretty good so surprised GP wants to speak to me and test again in 3 months. I'm assuming it's because 3rd increase on the run? ( July 2015 - 0.72, Jan 2016 - 0.78, July 2016 - 1.03, Jan 2017 - 1.18


I'm aware most members advise folks to be monitored via hospital rather than GP which I opted for. However I think thus far my choice was right as shown by GP not taking risks even though it might mean me being put back on 3 monthly tests.


Ray.

Edited by member 22 Apr 2017 at 09:48  | Reason: Not specified

User
Posted 12 Jan 2017 at 21:03

I might be barking but I think the GP (while being terribly sensible and wise) has put the willies up you. You have been this high before - and even higher - and then just settled back at or around 0.1

3 successive rises Is a warning shot across the bows but could still be simply your crazy PSA trend. Fingers crossed for the next test :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Apr 2017 at 18:35

Barry, thanks, your experiences and paths taken are helping me to arrive at the best route for me. If indeed needed as with my past PSA fluctuations it could well fall again - I'm forever hopeful.

My thoughts at present which are of course subject to change as info from consultants and tests are available are:

Besides wanting to avoid HT side effects I'm aware of its time limited effectivenes.

IHT can extend HT but nevertheless at some point it will no longer be effective.

Thus Salvage treatment before HT seems a logical path to take to extend survival time. You may note from that I don't see salvage as a cure but as one ages dying with it is a virtual cure.

Time will tell the path I take be that by choice or otherwise.

toad, thanks, by nature/ life experiences I'm the typical life is life get the problem sorted best you can and move on. However this time there is perhaps the biggest hurdle to overcome - the emotions of an extended survival time which results in my case of becoming increasingly tired of 'Living with it'. I'm certainly not complaining about that but 12.5 years to-date is tasking. Perhaps I/we need a well earned holiday to get my fighting spirit fully up and running.

Ray

User
Posted 24 Apr 2017 at 23:30

In general, it is the case that once a man has had a full course of RT further doses are only given largely to alleviate pain by being directed at a very small number metastases. However, in some cases at certain hospitals there is a willingness to consider further more refined RT. Two of the hospitals I asked whether I might be treated this way in need said it was a possibility and one asked if I could obtain the details of precisely the paths of the original RT so these could if possible be avoided. However, UCLH, my present hospital, have told me that they would not administer further RT or even more HIFU as I have had 2 major treatments already. (I was assured that this was not because of my age or other health issues.) In the event that my current PSA of 0.66 doubled, they would suggest HT. In that situation I might again investigate the possibility of refined RT such as but not limited to Cyberknife, as a possible way to further delay HT.

Some oncologists are prepared to treat more aggressively than others. It is up to the individual, if he so wishes, to explore what might be the next step for him and whether to follow the norm or perhaps take more of a risk with a consultant who thinks outside the envelope.

Barry
User
Posted 07 May 2017 at 14:16

Esophagus CT scan today (Sun). Whilst there they fitted the Prostate MRI ,which was planned for Thursday in afterwards - that's good service.

So they arranged Endoscope and Uro apppontments on same day (Wed's) 4 days later had scans done

I'm aware NHS get it wrong sometimes but this time marvellous service

Ray

Edited by member 07 May 2017 at 14:19  | Reason: Not specified

User
Posted 20 Dec 2017 at 20:00

Great News Ray


Have a great Christmas


Si

Don't deny the diagnosis; try to defy the verdict
Show Most Thanked Posts
User
Posted 12 Jan 2017 at 13:32
My husband was monitored by his g p at his request, but once that his PSA Began to increase he was referred back to the hospital, it was a smooth transition. The significance is that if it doubles I believe.
User
Posted 12 Jan 2017 at 13:58

Hi Ray,


I guess you are in the same boat as me, still a fairly low PSA but one which is consistently rising.


My own thoughts, and that is all they are, the uniformed thoughts of a layman, are as follows.


Those of us who have had RT as opposed to RP are still left with a residual 'healthy' prostate gland, which might be expected to make some PSA?


Over the years following RT, the healthy cells of our prostate gland should recover and grow, so some sort of increase in PSA is only to be expected?


Even if cancer has returned, either in the prostate or at some secondary location, the tumour can't be very big if it is only churning out such a low level of PSA.  So presumably no point having scans etc as there is nothing big enough to see?


Choice is therefore whether to go back on HT or not?


Last time I did that, on the recommendation of my consultant's houseman, was when my PSA had gone from 2 to 4 to 6 in as many months.  At my next consultation, the Consultant browsed my notes and said he might have not have put me on HT so soon, he may have been tempted to see how fast the PSA would rise.


As and when the time comes to go back on HT, I am inclined to opt for intermittent HT, and if that was the case the question is how high would we let PSA rise to during the intermittent periods off HT?  There seems little point starting HT until PSA has reached that threshold?


I don't know if any of these thoughts help you, I am merely trying to rationalise my own dilemma.


All the best.


:)


Dave 

User
Posted 12 Jan 2017 at 16:28

Andrew, thanks. I agree it doesn't matter who, provided you have confidence they are on the ball. In addition I at least like to believe a GP can treat the whole patient rather than just whatever disease. For a good 18 months GP has been keen on how I feel in general.

Blueytree, thanks. It's reassuring to know a refferal can be seamless as that's the impression I got from GP.


Dave, thanks. Another factor I feel should be taken into account is time of survival thus far. My understanding is the older the tumour the more likely it not only becomes more aggressive but produces less PSA. Thus it begs the question just how much reliance can be placed on a PSA test that is already unrealibly? Thus is how you feel a good guide to what is going on? Not quite waiting for lumps and bumps but on that path.

Overall, I could be in denial here, is I think the problem now is at least the first of the three levels was low -I.e. If that had been around an expected 0.8 then I wouldn't be a 3 in row increase now.

As regards GP I rang reception and said pass message on there is no need to call me. All GP could do is say don't worry just a precaution, thus the point?

Ray

User
Posted 12 Jan 2017 at 21:03

I might be barking but I think the GP (while being terribly sensible and wise) has put the willies up you. You have been this high before - and even higher - and then just settled back at or around 0.1

3 successive rises Is a warning shot across the bows but could still be simply your crazy PSA trend. Fingers crossed for the next test :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jan 2017 at 22:00

Lyn, thanks. I'm more than 80% sure it's my crazy PSA - this time. Not so much GP but as time goes by the increasing mind nag of 'how long do you think your luck can hold out'

Ray

User
Posted 12 Jan 2017 at 22:04

Hi Ray,

The 3 consecutive increases do not necessaryily mean that in every case PSA will continue to be upwards and lead to further treatment being offered. Looking at your PSA history I see your PSA in April 2012 was 1.22 and in January 2015 was 1.5, both above your latest figure, so over a long time your PSA has fluctuated but hitherto has fallen from it's peak. Certainly, PSA is not an infalable indicator of where you stand and you were diagnosed with an agressive cancer. It may be that your GP feels it is a point in time where you could be referred back to an oncologist for his/her opinion on whether anything else needs to be considered.

Naturally it is of concern but too early to be alarmed.


i

Barry
User
Posted 13 Jan 2017 at 09:51

Barry, thanks. Your reply reads spot on as GP just phoned anyways - test in 3 months if increased I refer you as its a rising trend. I mentioned the higher levels, but if up it's still that trend. Yes I think it's that G8 thats the underlying concern.

Oh well an incentive to get this refurb done in 3 months just in case -:)

Ray

User
Posted 13 Jan 2017 at 12:39

Hi Ray,


I am not entirely sure that the Gleason grade at initial diagnosis is quite so relevant in the long term.


My initial 2007 G9 cancer had only a 40% chance of surviving the HT and RT I had in 2007-2010, and by 2012 it seemed to have been beaten.


When it 'came back' in 2013 I went through all the tests again, and then some, MRI scans, CT Scans, bone scans etc, template biopsy, and I asked the consultant what my Gleason grade was, he told me that they don't use Gleason grading for previously radiated prostates.


I also asked whether my 2013 cancer was the same 2007 G9 variant that had survived the RT and HT, or whether I had developed a whole new cancer in what had previously been healthy prostate tissue unaffected by the original cancer?  I was told that there is absolutely no way of knowing that, in fact I think the answer was 'your guess is as good as mine'.


Let us assume that my 2007 cancer had been killed off by the initial treatment.  By 2012 I was a man with some healthy prostate tissue within me.  All of the risk factors remained, I still had two grandfathers who had died of PCa, I still had a cousin with PCa, all of the environmental and lifestyle factors that had contributed to me getting cancer in the first place remained.  I was basically still in the high risk camp over 60 etc.  So what came along in 2013 could well have been a brand new cancer?


Let us assume that you hadn't developed PCa initially and not had any of the treatment, you would still at your age be a prime candidate for a new PCa and it could be any Gleason grade, take your pick, 6, 7, 8 ,9, 10?


:)


Dave

User
Posted 13 Jan 2017 at 13:02

Dave

A good point as its always been a thought can recovered cells get PCa? Logically if as expected there is a gene fault then yes a more than average possibilty. The words from GP this morning were "there is something going on" - yep

Ray

User
Posted 13 Jan 2017 at 22:36

I think you are correct Dave that tumours can start afresh within a previously radiated prostate or be due to a few cancerous cells, possibly due to some of these not having been reached by RT or being radio resistant, beginning to become more active at some stage, although it has not yet been established that Ray is in this situation.

In my case after failed RT, the template biopsy given prior to my having HIFU in 2015 was given the same Gleason grade of 3+4=7 as was assessed at my original pre RT biopsy in 2007.

Barry
User
Posted 19 Apr 2017 at 13:56

PSA test on 3rd April. On the third time of asking only just got the result back from receptionist. GP is away so possibly why the reluctance to tell me its shot up to 1.96. It seems the GP was right to be concerned. I'm down to see GP on Monday so we see what next.

Ray

Edited by member 19 Apr 2017 at 13:58  | Reason: Not specified

User
Posted 19 Apr 2017 at 23:53

B****r - and we so wanted it to be just the GP being over-cautious. Really sorry to see this update Ray but your gut instincts have not failed you in the past - what is your inclination right now? Referral back to oncology is a given, I imagine, but a game plan is needed.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Apr 2017 at 08:48

Lyn, thanks.

A somewhat double hit as the emotional aspect hit hard as for many years now Chris (wife) and I due mainly to pet commitment have not been able to have a long day out let alone a holiday for many years. That all changed a month back which allowed us to start to plan breaks away and settle down on soon to be completed refurbed bungalow - that may have to go now sooner than expected.

On the medic front I would guess GP will refer in the first instance to my old Uro whom I have great respect for. From that at some point will be onco. We have started to discuss given the option which is the best route - essentially salvage or HT/IHT. My gut is the latter route as I responded well to HT in the past and as its been many years would I just be fighting fires on the salvage path trying to deal with mets and eventually going back on HT anyways.

Overall it's one of those pick ourselves back up and move forward as postive as we can.

Ray

Edited by member 20 Apr 2017 at 08:51  | Reason: Not specified

User
Posted 20 Apr 2017 at 22:47

Hi Ray,


PSA could still be part of a fluctuating cycle but certainly sensible discussing with your consultants. If considered appropriate, HT may bring the PSA level down but can mask what is the true situation. For some, (which included me), high quality scans can show tumour growth with a quite low PSA, whilst scans of others with rather higher PSA levels show nothing, maybe due to less concentration of the cancer cells. As the scans in my case showed a suspected Prostate tumour with the PSA of 1.44. I had a 50 needle template biopsy with only a single core revealing cancer. It rose to 1.99 immediately before HIFU which has subsequently knocked it back to between 0.39 and 0.76 (0.66 at most recent PSA test). I decided not to have the offered HT until PSA goes beyond 2. Our respective situations may be different but you could ask about a high quality scan at some stage if your PSA continues it's overall upward trend and maybe HIFU if this and a biopsy identifies a tumour in Prostate. Like me, perhaps you would wish to defer HT if appropriate, by having salvage treatment first? But let's see what your consultant's have to say.

Edited by member 20 Apr 2017 at 22:59  | Reason: Not specified

Barry
User
Posted 21 Apr 2017 at 07:45

Sorry to hear about the rise, time to get active and sort it out though. Best of luck with the Uro and Onco.

toad

User
Posted 21 Apr 2017 at 18:35

Barry, thanks, your experiences and paths taken are helping me to arrive at the best route for me. If indeed needed as with my past PSA fluctuations it could well fall again - I'm forever hopeful.

My thoughts at present which are of course subject to change as info from consultants and tests are available are:

Besides wanting to avoid HT side effects I'm aware of its time limited effectivenes.

IHT can extend HT but nevertheless at some point it will no longer be effective.

Thus Salvage treatment before HT seems a logical path to take to extend survival time. You may note from that I don't see salvage as a cure but as one ages dying with it is a virtual cure.

Time will tell the path I take be that by choice or otherwise.

toad, thanks, by nature/ life experiences I'm the typical life is life get the problem sorted best you can and move on. However this time there is perhaps the biggest hurdle to overcome - the emotions of an extended survival time which results in my case of becoming increasingly tired of 'Living with it'. I'm certainly not complaining about that but 12.5 years to-date is tasking. Perhaps I/we need a well earned holiday to get my fighting spirit fully up and running.

Ray

User
Posted 24 Apr 2017 at 08:57

Saw GP this morning. Re prostate, as anticipated being referred back to hospital I was first diagnosed at. Also being referred for camera as throat issues continue. Can't help wondering if there is a link and also a link with Cialis as problems seem to stem or have got worse since the start of taking them?

Ray

User
Posted 24 Apr 2017 at 09:28

Hi Ray
About 6 months after starting Cialis I had swallowing issues. I've always had acid reflux and used gaviscon. But the swallowing was different. Was put on Lanzoprazole which worked but it trashed my guts. Now on Pantoprazole and zero issues.


If life gives you lemons , then make lemonade
User
Posted 24 Apr 2017 at 10:28

Hi Ray


Fingers crossed, as you say. Values may come down.   You have posted a great deal of very useful information.


May I ask,  How detailed are current scans ?  (ie I follow Chris J posts re. PET etc ). Would paying privately (if an option) give access to better technology or not relevant  ?   


It's a tough call, without more info. which hopefully you will be given.   I concur with Barry and his post.  I'm assuming RT today is far more sophisticated and targeted than 12 years ago.  Would you consider RT ?     


Gordon


 


 

Edited by member 24 Apr 2017 at 10:41  | Reason: Not specified

 
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