At a CROSSROADS - which way forward? - Localised cancer - Prostate Cancer UK Online Community

User

Posted 21 Oct 2015 at 11:46

Hi All,

Now my latest PSA result has come back as 4.26 Testosterone - 17
It’s risen from 1.93 back in June and 3 months previously to that 0.32

I really need guidance please.

My Onco who I saw yesterday wants to put me straight back on HT. Big downer. Ready to accept that PCa is back but I'm sure there must be alternatives - like waiting? Don’t ask me what the trigger level should be before action is taken - they never told me that so I’m guessing it’s 4

With my head spinning with the news I didn’t get to ask all of the relevant questions. I’m hoping for a chat soon with the specialist nurse assigned to my case so I can discuss the options.

My staging up to this point has been:
Initial PSA - 119 (March 2013)
T3 Gleason 4+5=9 N0 M0
Locally Advanced
Cancer present in 11 out of 12 cores taken

I’ve had radiotherapy (23 sessions) + HDR brachtherapy - finished August 2013
I was put on Decapeptyl injections from the start and finished these in February 2015. My PSA went down as low as 0.14 in Sept 14 then
0.15 - Jan 15 T= 0.35
0.32 - Apr 15
1.93 - Jun 15

To have gone through all this treatment once was a challenge at times and coping with life hasn’t been a cakewalk especially with the side effects of the hormone treatment.

One question that keeps going over and over in my mind is what is my staging now? The Onco didn’t offer scans - I asked about a Choline PET SCAN but she said any cancerous growth would need to be 8mm in size to show anything. Could the problem area still be in the prostate itself?

Any clues?

By the way I thought by now I would be the one giving out advice and experiences on this forum but I seem to be the one asking for it. I’ll soon be posting my journey at this rate (for those who’d read it)

Please excuse the ramblings - my mind’s slightly unhinged at the moment. It feels like a rewind situation to when I had my initial diagnosis.

Alan

User

Posted 21 Oct 2015 at 12:43

Alan

As life panned out my expected coming back quickly didn’t happen however I still remember how it felt being told that which for me was far worse than the feeling at initial diagnosis time. Thus I have some idea of where you mind is right now.

Your PSA is rising quite sharply so I don’t think waiting is a good option, but your choice of course. Due to the sharp rise I can understand your onco wanting you to go back on HT straightaway but also of course not something you relish. Perhaps after the chat with your CNS you might agree to go back on HT for the time being just to get back in control and then look at alternatives even it means coming of HT for a while to allow a PET scan.

The trigger level is how different onco’s see it for each person. I would suggest a slow rise to 4 is less concerning than a sharp increase. I would go with its still in the prostate area until proven otherwise.

Good luck

Ray

User

Posted 21 Oct 2015 at 13:24

Hi Alan
I was given a PET scan at PSA 2.2. They agreed it was probably done too early suggesting 3 as the lowest PSA useable. The cancers had to be over 7mm to be seen. They guessed the rate of climb in my case and got it wrong , but the demand for the scanner is so high they pre-booked it.
Chris

User

Posted 21 Oct 2015 at 14:02

Cheers Ray,

Logically I suppose it is in the prostate area by default. I'm assuming that the HT will be to catch the little b****rs wherever they appear around the body including the local area.

I thought perhaps I might be asked to take part in some sort of trial using HT In combination with a drug. What do I know? Another option might be intermittent HT

There we go my mind's racing again.

Seeing the nurse tomorrow so should have a clearer picture then. Maybe in the end I have no options and just need to go along with the treatment prescribed.

Thanks again for your views Ray.

Alan

User

Posted 21 Oct 2015 at 14:11

Hi Chris,

The Onco knew about the Choline PET / CT scan and said it was available at Mount Vernon which is where I had my RT. I will save the request for another day unless there's a good chance that they might find something by doing it now.

Thanks,

Alan

User

Posted 21 Oct 2015 at 20:25

Hi Alan,

When my original external beam radiotherapy had 'failed', and my PSA had risen 2 to 4 to 6 in as many months, I was put on HT and then referred to Professor Hoskins at Mount Vernon for 'salvage' HDR Brachytherapy.

He asked me was I sure I wanted HDR Brachytherapy and had I considered prostectomy?

I told him that my understanding was that with an original Gleason 9, T 3 diagnosis, I was not a candidate for prostectomy.

He told me that he knew surgeons who would give me a prostectomy if that is what I wanted.

I settled for brachytherapy.

I am only posting this here, so that there may be someone out there who has had prostectomy as a salvage option after radiotherapy/brachytherapy failed?

Hopefully there are lots of options for you to consider?

Dave

User

Posted 21 Oct 2015 at 21:41

Dave,

You've confirmed what I'd read that prostectomy although rare can be used as second line treatment. Never had thought possible with my high grade PCa.

In that one sentence you've stilled the waters of my mind - another option, more hope. There is light for me and others at the end of a seemingly very dark tunnel.

Thanks mate.

Alan

User

Posted 21 Oct 2015 at 23:22

We have one member here who had prostatectomy after the radiotherapy but it should not be counted on as a realistic option as very few surgeons would even consider it let alone attempt the op.

Main reasons are that radiotherapy makes the prostate and surrounding tissue very gloopy and mushy so it cannot be removed cleanly with defined edges. This means that getting all the cancer is difficult, nerve sparing would not be possible and the side effects are more likely / more severe

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

User

Posted 21 Oct 2015 at 23:42

Hi Lynn,

I am sorry if I gave the wrong impression, I must admit I was taken by surprise when Prof Hoskins asked if I had considered that option, as it went contrary to everything I thought I had learned, but then again one consistent theme throughout the time I have had PCa, is just when I think I know about something, the science changes and the treatment options move on.

I am quite interested in your comments about the state of the tissue after radiotherapy, it is something I'd like to learn more about.

I was surprised when I had my second biopsy, that they never told me the Gleason grade, I asked and was told that they didn't grade it the same after radiotherapy.

I guess for someone like me who has had radiotherapy twice, what is left is quite a mess?

I was also taken aback to have got the prostate infection in August, after brachytherapy in February everything seemed fine, and by June I was telling everyone what a breeze it had been, then out of nowhere I got the infection in the prostate, which progressed in a few weeks from blood in the urine, pain sitting down and even the shivers.

That is of course six weeks ago now, I have just finished the course of antibiotics and feel much better now, but I struggle to imagine quite what is left of my prostate, have you any ideas?

Dave

User

Posted 22 Oct 2015 at 00:16

When an MRI showed a small tumor in my Prostate and I was considering HIFU as salvage treatment, I did ask whether a prostatectomy would be an option. Apart from the increased difficulty of doing this post RT as mentioned by Lyn, I was told there was a chance that a prostatectomy would mean about an 80% risk of incontinence, much greater than HIFU. Of course not everybody is suitable for HIFU and neither this nor prostatectomy will deal with any cancer that has spread outside the Prostate. I was told that if cancer has spread outside the prostate HIFU will not be given other than in a trial. Much could depend on where cancer has spread and how much of it there is. If limited to size and quantity that can be found through scans and possibly biopsy, it is sometimes possible to treat with RT. If the cancer is more widespread, or dispersed in a way that is difficult to identify, HT and or drugs might be prescribed to treat systemically.

Barry

User

Posted 22 Oct 2015 at 02:10

Dave, you know when you cut up a raw potato and put it in the pan it is hard and you could scoop it back out with a spoon but if you boil it for too long the potato becomes very fragile and if you try to scoop it up with the spoon, bits fall off and back into the water? I think it is like that - still there but loses all its form and solidness.

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

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