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User

Posted 31 Oct 2018 at 15:55

Sorry this has happened Steve.

Thinking of you all

We can't control the winds - but we can adjust our sails

User

Posted 01 Nov 2018 at 08:19

Time for a psma scan, to see what's been missed and if it's locally treatable.

User

Posted 01 Nov 2018 at 14:13

Agree a PSMA scan might be helpful. You could check whether you could have this on the NHS.Certain hospitals have already indicated they wish to do this and I am not sure whether lack of implementation is due to any one or more of three considerations, namely NICE approval for NHS, lack of funds, the need to have nearby source of generating the ligand. Unfortunately, the cost of the scan privately is of the order of £2500 depending where you go which unless things have changed recently means in the London area for UK.

If only a very few hotspots are found it may be possible to treat these and slow the progression of cancer, either as stand alone or with systemic treatment.

In view of your other medical condition it would be best to establish whether the foregoing would be helpful.

Barry

User

Posted 01 Nov 2018 at 19:22

Sorry to read your latest result. Worth asking for an earlier than planned onco meet?

Ray

User

Posted 02 Nov 2018 at 08:22

The oncologist at the Royal Marsden Hospital told me they have a PSMA scanner there but it’s only available for patients within their catchment area. I think it would cost me more than £2600 to move from Coventry to Sutton in Surrey to be included in that group, should I ever need such a scan!

I think there is also one at UCLH, and at the Mount Vernon Hospital: https://www.stricklandscanner.org.uk/

There does seem to be a dearth of these sophisticated scanning facilities in Britain and the Birmingham Prostate Centre say they have had to send over 30 patients to Germany for such scans in the past. So much for the miracle of the NHS (although it has been miraculous for me recently).

A recent post here noted that a new Thorium isotope is showing good promise as an even better PET tracer than Gallium 68, the gold standard up till now. This nuclear medicine is advancing rapidly, almost daily, so we all might be completely cured one day soon! 😉

Cheers, John.

Edited by member 02 Nov 2018 at 08:30 | Reason: Not specified

User

Posted 03 Nov 2018 at 09:38

Thanks everyone for replies and good advice.

I would really like to have a PSMA scan just to let me know what's going on. It's the "not knowing" that's the worst thing. If there's nothing much they can actually do once they have the information then I suppose they would regard it as an expensive way to deal with my curiosity.

Sometimes I feel frustrated that I know if I spoke to to my oncologist now, I'm sure nothing would change. She'd say "Well it's not going up (PSA) as quickly as it was before we put you back on treatment". I would have expected the figures to remain around the level they were in June, especially this early in the treatment plan.

Steve

Edited by member 03 Nov 2018 at 13:17 | Reason: Not specified

User

Posted 03 Nov 2018 at 16:34

There are lots of cases out there who really seem benefit from further salvage radiation if there are only a couple of hot spots to deal with.

I think it would be worth asking about.

User

Posted 08 Jan 2019 at 21:28

Hi,

Finally had an oncology appointment this afternoon (last time I saw her was back in June) and found I was not only surprised by what was said but a little shocked and disappointed.

As I said in previous posts, even though my PSA had fallen quite nicely from 4 to 0.775 and then 0.925 in June after I'd restarted Zoladex last March, but now my most recent PSA is 1.7.

The oncologist said she wasn't surprised by that but I wasn't expecting what she said next. She said that my PSA would now continue to rise but she didn't expect it to fall again under this treatment. She said that she would consider changing or adding to my treatment but not until my PSA reached double figures. I asked if I could have a PET Scan as I'd like to know where the cancer is and she said she would be happy to send me for one, again when the PSA reached double figures.

I was hoping my Zoladex treatment would work longer for me than it now seems it might. I keep being told that some PCa patients last for years on this treatment before having to go onto the next treatment.

I just feel now that my remaining years will be less than I was hoping for.

Steve

User

Posted 08 Jan 2019 at 22:04

Steve

Sorry to see this. It's all very unsettling.

I'm wondering if we are with the same oncologist.

Ulsterman

User

Posted 08 Jan 2019 at 22:18

Steve,

l’m sorry to see your latest update, I hope and pray that you will receive the treatment you need to get your PSA back under control and the outcome is more positive for you.

Best wishes, Arthur

User

Posted 09 Jan 2019 at 06:36

That sounds really disappointing Steve. So your first HT hasn’t lasted a year then ? Hope the next one does a lot better for you

User

Posted 09 Jan 2019 at 08:37

Sorry to here this Steve. I hope your oncologist will send you for scans soon rather than wait and then plan any additional treatment based on the scan results.

My wife and I have renamed my oncologist Dr. WTF because of the number of appointments where he has taken a completely different tack from the expected one. Usually a more pessimimistic one too.

Is it worth contacting specialist nurses and getting a second opinion?

Ido4

User

Posted 09 Jan 2019 at 11:55

Yes, If I were you I would request a second opinion on the NHS with an eminent oncologist of your choosing.

Best of luck.

Cheers, John.

User

Posted 09 Jan 2019 at 16:13

What was your testosterone reading? If you are above castrate level then the HT isn't working - possibilities include the wrong dose being given, too long a gap between injections, it being injected in the wrong site or stored incorrectly. If you are below castrate level then yes, you are becoming hormone independent but it is sensible to delay adding another hormone like bicalutimide at the moment because it has a limited life span in terms of effectiveness. The only possible alternative I could see right now is chemo but a) there is no evidence of mets outside the prostate bed (so could be a sledgehammer / nut scenario) and b) your heart problems may rule it out anyway.

So waiting until the PSA is a bit higher and then having a body scan seems very wise.

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

User

Posted 09 Jan 2019 at 20:17

Hi Steve

I don't know if early Chemo would work for you , I have had eighteen months since chemo plus HT , they may give you early chemo plus Abbi tabs ,I am now 70 , psa 0.04 and feeling ok

Barry

User

Posted 10 Jan 2019 at 03:07

Hi,

Thanks everyone for your messages of support and good advice.

Lyn, I think what you said about delaying adding other treatments was really what my oncologist has in mind. She wants me to get the maximum benefit from this treatment before moving on to another as each only lasts so long.

I will ask for another testosterone test to check on my levels. The one I had a few months ago was 0.8 which you said at the time was very close to the castrate level.

I'm finding it a little hard to come to terms with this recent news, I was hoping not to face this stage for several years. It seems to have come far quicker than I ever expected.

I have to admit that I do feel a little scared.

Steve

User

Posted 11 Jan 2019 at 23:17

Hi,

I had a testosterone test this morning

If when I get the results they show that I'm not at the castrate level, is there any chance that if my HT was changed from Zoladex to Prostap, would it make any difference to the chances of the treatment working better?

I'd be interested if anyone has done this and found the other treatment worked better.

Thanks

Steve

User

Posted 11 Jan 2019 at 23:50

That's one possibility - or maybe to have the 3 monthly dose every two months; there are a couple of men on here that have needed to do that. Adding bicalutimide is another possibility, or trying Stilboestrol (oestrogen) instead of ADT.

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

User

Posted 12 Jan 2019 at 00:32

Thanks Lyn.

I suppose whatever I wanted to do would have to be approved by my oncologist.

I had a long chat with my GP on Thursday evening and he said that he would support me in anything I wanted to do. He reminded me that it was "My Life" I was fighting for and he would help me as much as he was allowed to.

It's nice to know I have a wonderful GP.

Steve.

User

Posted 12 Jan 2019 at 13:06

Hope you get a way forward soon Steve. Your GP sounds fantastic.

That level of support is very reassuring.

Ian

Ido4

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