I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

EBRT & Salvage HDR Brachytherapy?

User
Posted 11 Jan 2017 at 01:26

Hi Guys,

I know that we are all unique, we each have our own cancer journey and few of you have experienced the same sequence of treatment as me, but a lot of you have learned an awful lot about this cancer and your thoughts would be appreciated.

In a nutshell I was at diagnosis G9T3N?M0, I had 3 years of HT with EBRT, then 2 years clear, then 2 more years of HT with salvage HDR Brachytherapy.

I now have my latest PSA result and reading the runes is rather difficult. 

Throughout 2015 whilst on HT my PSA was consistently <0.1.  I ceased HT in November 2015, and my consultant picked a target PSA of 0.4 for my first post HT PSA reading, that was last April and it was 0.1.  By the end of July it had risen to 0.2, my consultant was pleased and for the first time since initial diagnosis he took me off 3 monthly PSA measurement saying 6 monthly checks were all that was needed.

My latest check up last week comes in at 0.4, and I really don't know what to make of it.  In one sense it is good because my Consultant would have considered my salvage HDR Brachytherapy treatment a success if my PSA had been 0.4 last April, and it has taken 9 months to rise to that level, but on the other hand my PSA has doubled twice since I came off HT.

From what I find on the Internet, 'failure' of HDR Brachytherapy is defined as 3 consecutive rises in PSA from the nadir, however for patients who have been on HT the third consecutive PSA rise must be >1.5, and the ASTRO definition of failure is anything above 2.0.

So I really don't have a clue how my Consultant will react to the latest PSA, should I be worried that it is doubling, or should I be content that it is still low, after all its only just over a year since I stopped HT and started getting testosterone back into my system.

Also of course I still have a prostate gland, or what is left of it after two bouts of RT, but surely what is left of it should produce some PSA if it is healthy?

Your thoughts will be appreciated.  

:)

Dave   

Edited by member 11 Jan 2017 at 11:42  | Reason: Not specified

User
Posted 11 Jan 2017 at 13:07

I see you still haven't had an answer Dave so bumping in the hope that somebody in the know will get back to you

We can't control the winds - but we can adjust our sails
User
Posted 11 Jan 2017 at 17:07

Hi Dave,

Can't help that much. Only to add that I had straight forward HDR Brachy in July last. I have had no problems, and would recommend it to anyone suitable, and you are the only other person I know who has had it.

My last PSA was 0.43, and I had a blood test today, so still awaiting the results.

Will see the consultant again in early Feb.

Be interesting to see if anyone can give useful advice.

Dave.

 

 

 

User
Posted 11 Jan 2017 at 18:35

Hi Dave,

I am sure that like me all those that read your post hope there is an explanation for your increasing PSA that does not forebode ill and that your consultant will be able to confirm this. I feel the lack of response from members is most probably because we are not experts and feel rather than speculate or offer advise it is best to leave for you to discuss with your consultant. But please let us know what is said.

Barry
User
Posted 03 Mar 2017 at 01:11

Hi Guys,

Moving on from my previous post when I saw my Consultant in January, his opinion was that, despite my PSA being low, the fact that it has doubled twice should concern us.  Accordingly he set me a target of 0.6 for the next test in May. 

Anything above this, like 0.8, should trigger a resumption of HT.

Now I wasn't pleased with that news, but I trust my Consultant, he's kept me alive these last ten years, and I could see the sense in what he was saying.

However, I still bore a nagging doubt, if PSA levels in the 3 to 4 or even 5 range are perfectly normal for healthy men of my age, why aren't such levels perfectly normal for a man who has had part of his prostate irradiated?

Yesterday I had a follow up 'annual review' with the team of the specialist who gave me salvage HDR Brachytherapy.  Her line was that anything under the nadir+2 threshold was absolutely fine, and as my prostate settled down post treatment a PSA in low single figures was to be expected, indeed she told me not to consider HT until my PSA was in 'double figures'.

So clearly mixed messages, the consultant who I trust referred me to the specialist who I also trust, unless I have mistaken what they say, they can't both be right can they?

I would be interested to know what everyone's thoughts are about letting PSA rise post treatment.  Is letting the PSA rise untreated to double figures reckless, or is it merely ensuring that we do not over-treat a potentially benign, albeit battered and bruised, prostate?

:)

Dave

   

User
Posted 03 Mar 2017 at 08:49

I think two things are going on. First there is a point at which everyone has to accept that treatment has failed again and that you have a recurrence. Secondly, there is the point at which you start HT, knowing that this is going to be a long term holding solution.

Your first consultant is acknowledging that if you get to 0.8 you are probably in biochemical recurrence. The second is giving a ball park figure for when she believes HT should be recommenced. Some oncologist think this should be at nadir +2, others say 5 or 10 or even (in Bri's case) 20. You may also have a view about the point at which you would agree to go back onto HT, which will be different to the point at which you accept the salvage brachy failed.

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

User
Posted 03 Mar 2017 at 08:50

PS in an irradiated prostate, getting over 2 is not benign.

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

User
Posted 03 Mar 2017 at 11:19

Dave

Firstly I clarify what I mean by failure in your case - PSA increases indicates there is a cluster(s) of PCa somewhere. From that the choice: at some point you accept as Lyn says HT is the way forward or you ask when the PSA reaches a level scans can identity cluster(s) is cyber knife viable? If you are prepared to let PSA rise to say 4 and future cyber knife is viable it's a choice you could make then.

Ray

User
Posted 03 Mar 2017 at 17:17

Hi Lynn & Ray,

Thanks for your responses, to some extent I think I am getting ahead of myself, after all when last tested my PSA was a mere 0.4, and if it had been 0.4 consistently since I came off HT, everyone would be congratulating me on a marvelous result.

Of course I am not foolish enough to expect it to have stabilised at that and anticipate something higher next test.

However I am in the mood for a white knuckle ride, and am prepared to stay off HT until we are absolutely sure that the rise in PSA can only be caused by PCa, I don't want to go back on HT merely to be on the safe side.

My own consultant is quite frank, saying that because there are so few patients who have had the same combination of treatment, he does not have an reliable statistics upon which to base his judgement.

From what I have seen on the internet, Nadir plus 2, or 3 consecutive rises reaching to over 1.5, seem to be the criteria, so I see no sense in going on HT until it is past that.

We also have to accept that a PCa tumour chucking out PSA at a level less than 2, is going to be hard to find let alone cure.

I don't think I will be a candidate for cyberknife or any other curative treatment, I have now had two blasts of RT, Lynn has previously pointed out that surgeons aren't keen on RP of a previously radiated prostate, and I have probably reached if not exceeded the safe limit so far as RT is concerned.

One of the problems I found after my first relapse, is that the doctors can only justify the expense of scanning us, if there is a prospect of some treatment.  So I don't expect them to go looking for a residual tumour if they intend doing nothing other than HT.    

I mean who knows what is going on, I could have some regrowth of the original tumour within the prostate,  I could have a new tumour within the 'healthy' residue of prostate tissue, I could have some small secondary tumour, I mean all my clear bone scans meant that there was nothing big enough to see at the time the scan was done.

So all I can do is watch and wait, time will tell, but I must admit the idea of letting the PSA rise to double figures before going back on HT has its appeal.

:)

Dave

 

   

User
Posted 03 Mar 2017 at 18:21

You can't plan for all possibilities though, when you don't know for sure how many possibilities exist. John's onco surprised us by saying (when he thought the salvage RT was failing) that if the PSA rose again he would arrange for one of the new scans (not the PSMA but the other one that I keep forgetting the name of) and if the tumour was in lymph nodes or away from the prostate bed he was willing to do some more targeted RT.

Your prostate has been fried from outside and within .... if (if) you did have a recurrence it is entirely possible that the problem might be away from the bed and therefore might be zappable, regardless of how much you have already had.

On the up side, while it stays around or below 2 it can be simply the healthy prostate cells regenerating.

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

User
Posted 03 Mar 2017 at 19:43

Dave

To me the most important factors in deciding when to fire the treatment bullet are: rate of increase, age, survival time to-date, estimate of survival times between options, what my gut/faith tells me at the time, the as yet unknown factors.. I've no idea which of those will have the greatest weight if the time comes to decide. Your own list could well be very different to mine which highlights our journey is unique and we tread our own path. Good luck on your successful path to-date.

Ray

Edited by member 03 Mar 2017 at 19:46  | Reason: Not specified

User
Posted 03 Mar 2017 at 22:12

Hi Guys,

Well thank you for your responses, I am very lucky to have fellow travellers with time to pick over the bones of my dilemmas and offer their wisdom, you are a great help.

Lynn you are right, medical science moves on ever faster, one of the things I had to consider when opting for EBRT ten years ago, was that, state of the art medical opinion at that time was that you could only ever have one blast of RT below the diaphragm, and if I 'used it up' treating PCa, then it would be heaven help me if I ever developed kidney/bowel/bladder cancer.  Of course now we know that not to be true.  So by the same token things that are current orthodox thinking will be overturned in years to come.

Ray you are right that 'gut feeling' is important, I am getting to an age when I cannot remember in detail everything I have see, heard or read, but if I feel something is right then it probably is.

So thank you, it's my birthday, I am celebrating with a drink, its ten years now since diagnosis, and longer than that since your lives were first touched by PCa, so pour yourself a drink, and let's drink to the next ten years?

:)

Dave 

User
Posted 03 Mar 2017 at 22:51

Hi Dave,

Some consultants have a more proactive attitude than others but an individual's histology, what treatment he has had and his response to this and for how long it worked are some of the factors that may influence a consultant in proposing the way he/she may to be appropriate and this may well need to be modified over time. I have been told that a PSA figure of 1.2 will mean HT as the next step but just before starting this I will have a high quality scan through NHS or in need privately and if anything is obvious investigate what other options are possible in the light of findings. HT is a sort of holding situation and if another treatment option can defer this so much the better. If/when I reach 90 I may feel differently and just settle for HT but at a mere 80 I find my motor cycle heavy already without debilitating HT.

Barry
User
Posted 03 Mar 2017 at 23:17

Dave hope the Birthday drink went down well.

Ray

User
Posted 12 May 2017 at 11:25

Hi Guys,

Just to update you all, my latest PSA on 3rd May is 0.2.

So in the 18 months since coming off adjuvant HT after the HDR brachytherapy my PSA has wandered about 0.1, 0.2, 0.4 and now back to 0.2.

I hate to use the c-u-r-e word because I know it's bad kama and tempting fate, but by the same token I don't visit this site so often these days, I am getting on with my life and PCa is becoming a less relevant part of it.

When first diagnosed ten years ago, with Gleason 9, PCa sort of knocked me off my feet, changed my outlook on pretty much everything, and invaded every aspect of my life.  I didn't think then that I would be here today, let alone posting about good news.

I know I have been lucky, and my heart goes out to those of you less fortunate.

I guess I am still pencilled in St Peter's diary, but I am starting to think that it might be on a page in the 2020's? 

So all I can do is wish you all well, and recommend salvage HDR brachytherapy to anyone offered it, as it seems to have worked for me? 

:)

Dave

User
Posted 12 May 2017 at 12:04

Hi Dave I'm so pleased for you and have always been grateful for your forum advice and friendship. I reckon it's so important good news is on the site , in fact more so than just strife.
Friday early beer is in order. Jump to it !!!
Chris

User
Posted 12 May 2017 at 15:14

Great news Dave long may it continue you story is a great help to us all.

 

Regards John.

User
Posted 13 May 2017 at 01:11

Dave,

Your PSA is going to fluctuate but so far you seem to be doing very well and it is good that you are able to put this more to the back of your mind.

Barry
User
Posted 13 May 2017 at 01:42

This is just brilliant news - dare I say I told you so?

Enjoy that drink x

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

User
Posted 13 May 2017 at 09:57

Great positive news, Dave, long may it continue. My wife is my rock and is always banging on about positivity!. She is absolutely right of course! My quality of life is still OK and is not being adversely affected by my circumstances, but sadly for many on this forum that is not the case and my heart goes out to all those whose quality of life is dramatically affected. Cheers, Dave, my next drink will be for yourself and all our fellow travellershttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Regards Tom  

User
Posted 13 May 2017 at 11:04

Great News Dave, long may it continue. Its looking like I'm out of remission - biopsy 19th. I will look at Salvage HDR but?

Keep doing well

Ray


 
Forum Jump  
©2024 Prostate Cancer UK