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User

Posted 26 Feb 2016 at 08:56

I have been browsing the site picking up

such a lot of useful info from everyone here but I would like to ask about your thoughts on somthing. Having had the prostate removed by RALP last August I have been fortunate to have a trouble free recovery. My PSA in Nov was 0.2, rising to 0.3 after 6 weeks and remaining at 0.3 after a further 6 weeks.

Have anothet PSA on April 11th. Onco is

great and we have been trying to get a handle on cell locations to decide on treatment. I have been working hard to get bladder under control knowing this would be vital for RT and am 99% there. I have no orher medical issues that I am

aware of and I feel really good. Suddenly

I am thinking - if the next PSA reading is

unchanged do I want to go through RT risking the side effects which could be permanent. On the other hand the Onco is convinced that if the cells are in the prostate bed then RT has a very good chance of killing them while numbers appear to be low.I know this sounds daft but I been so busy living life and getting control of the continence issues that it has only just really dawned on me that I have cancer and need to make some informed decisions about the future.Please don't think I am in any way feeling down or upset in any way as this is just life but any thoughts from anyone would be appreciated (no matter how whacky or alternative).

I am constantly amazed by the little nuggets of wisdom that you all throw in the pool and it is quite amazing how far the ripples can travel.

Kind regards to all.

Kevan

User

Posted 26 Feb 2016 at 11:29

Hi Kevan,

I had salvage RT two years after a laproscopic RP. If anything, I wish I had had it earlier. I felt that having opened up the possibility/necessity (at 0.2), the urologist was prevaricating a bit while the PSA climbed; stating that the RT people wouldn't want to do it at such an early stage ( I'm not convinced that was a true reflection of the situation) It was 0.6 before I was sent to the RT people.

The only advice that I would be confident of giving anyone going down the route of salvage RT is this;

Ensure you get the best available diagnostic scan before RT takes place, at least PET/CT if not Choline PET/MR in order to determine as accurately as possible where the PSA is coming from.

Best wishes,

Dave

Edited by member 26 Feb 2016 at 21:27 | Reason: Not specified

Not "Why Me?" but "Why Not Me"?

User

Posted 26 Feb 2016 at 12:25

Hi Dave

Thanks so much for the response and your advice. I will make sure that I have a conversation about the scan as I don't really want to go through RT if it is not going to be effective.

Thanks for sharing your experience with

me, I will let you know how we get on.

Kevan

User

Posted 26 Feb 2016 at 14:02

Crescent said what I was thinking - whether you could get a Choline PET scan before making a final decision. Having said that, John (who was massively in denial about needing salvage treatment) was referred to oncology at something like 0.15 after a series of small but consistent rises. At 0.3 there is clearly something left behind so my thoughts would be that undergoing RT and managing any side effects (which you might not actually get) has to be better than the side effects of incurable cancer a few years down the line. My hesitation would be that without a high definition scan, you could have pointless RT to the pelvic area when there are micromets somewhere completely different.

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

User

Posted 26 Feb 2016 at 15:52

Lyn , hi , this what we thinking at the moment. Such an awesomely tough decision. Many people have told me with my scores I must have lots of micro mets everywhere creating the PSA , yet too small to be seen yet. Is it worth RT ? My results suggest 18% chance of survival over 10 years even with RT. Might be good to save it for palliative care. And RT side-effects aren't guaranteed. Difficult.
But Kevan if my figures were the same as yours and low but climbing , I know El would want me to try RT as there would be chance of cure. Unfortunately I fail 5 of the 6 criteria for starting RT.
The more I read about Choline-PET scans for prostate cancer the more I un-rate them. The new PMST scan might be better. My scan showed nothing and they are rarely given.
I can only hope you can make a decision. I have to make mine soon and quite frankly I think I may settle for permanent HT and all that follows. No way do I want the RT if in fact is futile.
Best wishes
Chris

User

Posted 26 Feb 2016 at 17:13

To be fair CJ, your PSA is 8 times higher than Kevan's so may be much more clear cut. You already know my view on your recommended next steps although I am worried about saying it again and pushing you over the edge :-#

For what it is worth, I don't think you will go ahead until and unless the onco gives you a clear reason - to simply keep telling you it isn't going to extend your life but do it anyway is not enough. In Kevan's case, they are offering a chance of remission and since I practically forced John down that route it is unsurprising that I can see the benefit of RT.

Kevan, have they told you whether a) you would need HT and b) how long that would be for? While J breezed through the RT he found the hormones unbearable and stopped them early. He will probably pay for that decision at some point but hey ho.

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

User

Posted 26 Feb 2016 at 17:42

Hi Chris and Lyn

Thank you both for taking the time and trouble to give me some feedback, it is really appreciated.

The gist of the conversations with the Onco so far:

There are cells and we honestly don't know where they are. Without knowing this RT could be a waste of time as we don't know where to target it. If cells are in the prostate bed then RT can be targeted effectively and hopefully will kill them. If they are floating around elsewhere then the RT would be a waste of time and so we would go for HT which kill most and damage most of the remainder.

He said that in most cases if the PSA remains the same or rises very slowly this would indicate that the cells are in the prostate bed, if the PSA rises very quickly then it would indicate they are elsewhere. This is why we agreed to monitor PSA to see what was happening. He has indicated that if in April the PSA is at 0.4 or above, he would possibly offer me a new flucoiclovine PET/CT scan as part of a trial as they belive that this may highlight the location of the cells. He has not mentioned HT and RT at the same time.

From what both of you and Dave have said, I need to be talking to him about what happens if I stay at 0.3 and so do not get the trial PET/CT scan. I am pleased to say that this is all making some kind of sense to me now thanks to you all.

I hasten to add then I don't think I am in denial about it, it's just that for some reason the only thing I have had on my mind has been getting on top of the incontinence rather than why it was there in the first place. My wife tells me that I have a very strange way of dealing with life so I will not be the slightest bit offended if you think the same. It's just there are so many good things going on that I just deal with the other stuff, move on and don't look back.

Thanks so much for your help thus far.

Kind regards to all,

Kevan

User

Posted 26 Feb 2016 at 17:57

Kevan
That's a great post and as Lyn points out ( I thought I already had ) our results are very different. But our fears and worries are very real and the same. I , maybe like you , got the RP out of the way and hoped that would be it. I'm not a happy person but I'm ok just bumbling through life now and stupidly maybe want to ignore everything.
I can't really offer you solid advice but I've read no end of RT articles the last few days , and it seems you would be in a position still for cure. However that is still only a 40% chance of 10 year survival. But that's still good odds isn't it ? Anyway all the best and keep talking
Chris

User

Posted 26 Feb 2016 at 19:06

Thanks again Chris. This chat is makingme realise that Iif RT is on offer then I just have to bite the bullet and take what comes my way. As you rightly

point out I will be in with a chance.

I realise that you have additional problems to deal with and I greatly admire you for helping others in the way

that you do.

Great food for thought from you all which has been really useful.

I will keep you posted with progress and I shall continue to follow you posts with great interest.

Kind regards

Kevan

User

Posted 26 Feb 2016 at 20:49

Hi kevan I can't offer any advice but just wanted to let you know thinking of you and wishing you all good wishes. Jayne x

User

Posted 26 Feb 2016 at 21:33

Hello again Jayne

Lovely to hear from you and thanks so much for your good wishes. I will post results of next PSA test and what happens next.

Glad things are progressing well for you both - long may it continue.

Kevan

User

Posted 27 Feb 2016 at 11:29

Kevan,

I am in something of a similar position. Radical prostatectomy in October 2015, followed by an unrecordable PSA. I was ready with the champagne and balloons, but the histology from the operation showed spread to the seminal vesicles and one lymph node. They took all of those out in the operation, but my oncologist recommended 3 years of hormone withdrawal therapy and radiotherapy.

He considered the chances of my still having microscopic cancer cells to be quite high and so was recommending further treatment. He agreed that I could wait to see if my PSA rose and then go for RT, but he said that I would then need a higher dose and the chances of success would be less. So, even though my PSA is still zero (last week), I'm putting my head down (biting the bullet as you put it) and going with it. I've had my scan and will start my 37 sessions in a fortnight. I've stopped work, and am simply getting my body as fit as possible for whatever lies ahead, in the hope and expectation that by the summer I'll be cancer free and can get back to some work.

The very best of luck with it all!

Chris

User

Posted 27 Feb 2016 at 15:15

Thanks so much for your reply Chris. What you say coupled with the comments from everyone else who has been kind enough to share their thoughts has convinced me that I need to go ahead and have the treatment.I think I must have had a momentary wobble contemplating the thought of possibly going through the continence issues all over again when I have just got over them and feel so good.

I hope that everything goes well for you during your treatment and that you finish up with a good outcome.

Sincere thanks once again.

Kevan

User

Posted 28 Feb 2016 at 09:19

Hi kevan, read my profile.

I had RP in Feb 13. In March my post op PSA was 0.06. Urologist said 30% chance of further treatment. I saw the oncologist. By July my PSA was 0.087...so still very low but she recommended RT. So I had that in Aug/Sept 2013.
Since then my PSA has slowly dropped and in September was 0.02.
I have another PSA test in March so hoping the downward trend continues

Good luck with your decision

Bri

User

Posted 28 Feb 2016 at 10:25

Hi Brian

Just got back from a lively ride through the lovely Wiltshire countryside on the bike and saw your reply.

I read your profile as you suggested and

was heartened to see that you came through the RT with virtually no side effects. I realise that this does not mean that things will be the same for me but it

is great to talk to someone who has had your experience and I feel very positive about it all now.

Thanks so much for your input and I hope that your PSA Continues its downward journey.

Kevan

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