Possible biochemical recurrence.

Are there any lifestyle factors that will affect the speed of growth?

Ah, I might then take up smoking and drinking. ;)

Hi All

The latest check showed a bit of a jump. Now I am looking at this:

21 Jan 2020 = 0.04

20 April 2020 = 0.04

24 July 2020 = 0.04

10 November 2020 = 0.08

15 December 2020 = 0.05

16 March.2021 = 0.08

15 June 2021 = 0.14

22 June 2021 = 0.13

15 September 2021 = 0.17

10 December 2021 = 0.28

17 March 2022 = 0.27

9 March 2022 = 0.31

06 September 2022 - 0.41

I need to get a PSMA PET scan, but Genesis in Windsor and Oxford are looking at 2 weeks. My consultant is trying to get me one sooner at London Bridge.

Is anyone aware of any other centre that is likely to be quicker? If I am going to have to start SRT I want to do so sooner rather than later.

Thanks for your input chaps.

That's because I cannot tell the difference between March and June!

Genesis Oxford has called me back saying they have some slots next week, but there are others in the queue that they need to offer them to first.

Both Oxford and Windsor can do me a scan in 14 days.

Where was the scan Chris? I am in the midlands.

I am no expert on the different types of scan, but I am not seeing PSMA PET scans advertised there on Google.

Thanks. I have just called them and it's 5-6 weeks wait.

However, when I asked my surgeon to get a recommendation, it was this chap's name that came up. He wants to see me and refer for an MRI on my liver.

Can anyone confirm what happens with an onco? Do they just do the planning and then hand it over to their team to administer the EBRT? One of my bigger fears is a clumsy medic frying something they shouldn't. I ask because the onco's "home" hospital is not where I want to have the EBRT.

You'll forgive my cynicism, but my cancer journey has been a series of cockups. From misdiagnosis as BPH to  to sepsis after my biopsy it has not been pretty. I have previously had other medical mistakes with other (minor) ops due to what can only be described as bungling.

I didn't know it was run as a computer program, very interesting. I like the idea of gold seeds more than tattoos, though!

Having had my lymph nodes treated with RT at the same time as my prostate was beamed I can say that there were no additional problems. There are different ways of administering RT to nearby lymph nodes, a recent development being that the same level of RT is delivered to each node as is delivered to the prostate. You could ask your onco about that detail.

ADT is tough but tolerable. I'm just finishing mine at age 75 after two years. To some extent you get used to ADT though this does seem to vary for different people. If you work hard on your physical fitness it helps a great deal. For some odd reason it's mentally harder to work on physical fitness while you're on ADT. It's possibly something to do with the loss of drive that normally comes from testosterone.

Overall, ADT after RT does increase your chances of staying alive and that's quite useful.

Jules

Yes, it's not good to have something like that hanging over your head so that's the starting point isn't it.

As far as diet and weight gain go, it's very hard to prevent weight gain without either changing your diet significantly or exercising massive discipline. I know I gained 6 kilos over a couple of years but with the HT about to finish the promise of a more normal future has been something of an inspiration to reduce weight and I've carved off 5 kilos in a couple of months. It's made a huge difference to how I feel and function. If you go with ADT remember it does end and at your age it's an inconvenience but not a huge bite out of your life.

Jules

I had my follow-up tonight and the good news is that the liver lesion is nothing. It is a small cist and of no consequence. The onco said you've got to be careful with PSMA PET scans because they can throw up these anomalies. In fact the last time they said I had gynaecomastia, which I don't.

The result of the PSMA PET scan was, therefore, "a sub-cm focus of uptake inseparable from the right vas deferens". Which makes sense, because I lost 40% of the nerve bundle on that side.

The onco wants me to start EBRT immediately with 2-years of bicalutamide. However, I struggled to get any guidance from him regarding the chances of success. By which I meant a cure. It seems that he thinks it more likely than not that I will see a recurrence at some stage. But he said that he thought that recurrence probability was:

5-years 15%

10-years 25%

15-years 40%

He qualified that with, "but you're young for for PCa so I wouldn't rely upon those figures, because it's more aggressive in younger men.

In summary, then: My idea of success is eradication, his idea of success is eradication for a period of time.

I would welcome some advice though guys please. Should I get a second opinion? The onco I've been seeing has a good rep I believe and he works locally.

Also, I am slightly terrified by the idea of bicalutamide for 2 years. It worsens everything I currently struggle with - weight control, overheating and mild ED (since RP). Is it absolutely unavoidable and are there any strategies for getting through it?

Thanks in advance.

No HT is an option you can chose IMHO, a recent trial has reported on this and is discussed here:
http://prac.co/l/2e32hxdt

No improvement to overall survival, some benefit to other intermediate end points for 2 years HT. No benefit for any measure for 6 months HT.

At my next onco meeting I will be discussing this trial in my case assuming my PSA has gone up again. I really struggle to see the benefit of HT in that SRT setting given this latest trial demonstrates no OS benefit.

Edited by member 12 Oct 2022 at 07:43  | Reason: Not specified

Thanks for the replies guys, much appreciated.

When selecting a surgeon, it was easy to find the main players - even the Times listed them! Not so oncos, as far as I can see. Any tips on finding a good place for a second opinion please?

Also, on the subject of the EBRT with a current scan image, does anyone know what they are called, so I can find a unit that runs one?

Thanks Chris.

If I have read that correctly, it still finds that 24 months of ADT is optimal.

I have not read anything that fully considers QoL in the use of ADT with EBRT.

24 months optimal for MFS and time to ADT. BUT as you have had ADT for two years of your life already you still have that benefit possibly unused on the no HT arm of the trial.

Also as there is no overall survival benefit you have wasted 2 years of "prime full fat life" on HT.

http://prac.co/l/2e32hxdt

Link edited!

My theory is any HT benefit is limited and is different for each individual but is available at any stage of the cancer. This would seem to be bourne out by the "No OS benefit" finding.

Edited by member 12 Oct 2022 at 08:13  | Reason: Not specified

Royal Marsden do second opinions and be they are reviewed by their MDT too I believe.

That trial seems to prove the other wrong!

I for one will be interested in their answers! 

I have just come off a video call with [Drs name removed by moderator], from Royal Marsden, who has given me a second opinion. Clearly I have yet to receive his written recommendations, but from my notes:

EBRT with 2 years of ADT will give me the optimal chance of survival. However, the long term survival benefit is only 3-4%.

The online nomogram doesn't apply to me because it is out of date.

He said that I may be overly concerned about the side effects of Bicalutamide. He said that I should not get hot flushes, but my sex life will be impacted. I will also probably gain weight. He said that if I try it and dislike it it will take 48 hours to return to normal (presumably weight gain notwithstanding).

He confirmed that if I have EBRT to the Vas Deferens and later recurrence in (for example) my lymph nodes that I can have a second bite of the cherry, BUT that EBRT for a second time is more risky. If I get a double dose to somewhere it may well cause damage.

If I have ONLY the area identified treated with EBRT and don't have ADT the chance of recurrence at some point is 15-20%.

I will only require 20 fractions of radiotherapy.

He is going to obtain recommendations for an alternative consultant for the EBRT. He knows someone excellent, who is coming to work up here, but he won't be in post for two months and if I am not having ADT that is too long.

I await his letter so that I can compare his formal recommendations against my notes.

Edited by moderator 24 Oct 2022 at 11:52  | Reason: Removal of Doctors name