Possible biochemical recurrence.

User

Posted 11 Oct 2022 at 08:42

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?

User

Posted 11 Oct 2022 at 15:00

Piers, are you referring to machines with image guidance (ig) capabilities.

Thanks Chris

User

Posted 11 Oct 2022 at 15:35

Thanks Chris.

User

Posted 11 Oct 2022 at 16:12

The ones at city hospital Nottingham are tomotherapy machines scan as well as treatment

Edited by member 11 Oct 2022 at 16:14 | Reason: Mistake

User

Posted 11 Oct 2022 at 18:19

The machine I had SRT on (the hospital had two) was called the Varian Halcyon. I don't know whether other manufacturers have similar models.

User

Posted 11 Oct 2022 at 20:02

Originally Posted by: Online Community Member

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.

Feanci that link doesn't work. Can you give it to me again please?

User

Posted 11 Oct 2022 at 21:42

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.

User

Posted 11 Oct 2022 at 23:53

Originally Posted by: Online Community Member

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.

It's the RADAR trial

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

User

Posted 12 Oct 2022 at 08:53

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 09:13 | Reason: Not specified

User

Posted 12 Oct 2022 at 09:19

Originally Posted by: Online Community Member

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.

I have to go out for a while but will look at this again later.

A couple of things stood out for me during the onco appointment. The 5- year non-recurrence figure looks good, but for two years of that you're on ADT, so you're only getting 3 years really.

Also, contrary to my understanding, they can now revisit prostate bed EBRT, it is no longer a one shot game.

User

Posted 12 Oct 2022 at 20:35

Not so sure about revisiting the prostate bed? You can have your lymphs done later if you only had prostate bed RT.

User

Posted 12 Oct 2022 at 20:45

Originally Posted by: Online Community Member

Not so sure about revisiting the prostate bed? You can have your lymphs done later if you only had prostate bed RT.

It was a brief conversation, but the onco implied that if SRT failed they could have another go. I said "but won't I have had my lifetime dose of radiation to the pelvis?" he replied "no, that's how we used to think, we can go back now". I didn't ask specifically whether he meant they could address the prostate bed again, but I will ask.

I've read the article you linked, thanks. It does offer some encouragement for non SRT without ADT. The onco was very enthusiastic that I should have ADT, however. But then, I suspect he is looking at it purely from a medical outcome perspective, not a QoL one.

I am trying to find a well-regarded onco for a second opinion, but have not turned up anyone yet. I am happy to pay a leading onco for an opinion, even if it is not practical to use them for the SRT. Does anyone have any suggestions please?

Edited to add: This is the study that the onco referred me to with regard to 2 years of bical being significantly beneficial: https://www.nejm.org/doi/full/10.1056/NEJMoa1607529

Edited by member 12 Oct 2022 at 21:12 | Reason: Not specified

User

Posted 12 Oct 2022 at 21:45

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

That trial seems to prove the other wrong!

User

Posted 12 Oct 2022 at 21:54

Originally Posted by: Online Community Member

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

That trial seems to prove the other wrong!

Thanks for the tip ref Royal Marsden.

Yes that trial does seem to go the other way! It is 5 years old mind you.

I remain open minded, but what I have read seems to suggest that ADT for 18 months + EBRT is the optimal. I don't WANT that to be the case, but I fear that is my initial impression.

Mind you, if it is Bical and Tamoxifen oral I can always just stop taking them if I feel too grim. I would not cope with injections - it's a ride you cannot get off.

With my RP, the surgeon and I agreed on a "light touch" approach, which has resulted in good continence and erectile function. I wonder whether there are any oncos out there who have a similarly sparing approach.

User

Posted 12 Oct 2022 at 22:07

If it’s any help, I was on bicalutimide as a primary HT for 18 months and didn’t suffer any particularly dreadful side-effects. Some weight gain and tiredness (I’ve never slept better in my life). I felt as if my head was stuffed with cotton wool and couldn’t think clearly when I first went on it, but that wore off after a few weeks.

Best wishes,

Chris

User

Posted 14 Oct 2022 at 12:29

Originally Posted by: Online Community Member

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

That trial seems to prove the other wrong!

OK, I've spoken to the Royal Marsden (thanks Francij1), who are organising a second opinion. Their system sounds quite good and I am hopeful of some good advice.

I have sent over all my results and written a letter detailing my concerns, which basically boil down to "I don't want to spend the remainder of my 50s on ADT and surviving, rather than living, if at all possible."

Edited by member 14 Oct 2022 at 12:30 | Reason: Not specified

User

Posted 15 Oct 2022 at 07:30

I for one will be interested in their answers!

User

Posted 15 Oct 2022 at 08:31

Originally Posted by: Online Community Member

I for one will be interested in their answers!

I will report back! They said it would take 48 hours and I sent it yesterday.

User

Posted 24 Oct 2022 at 12:43

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 12:52 | Reason: Removal of Doctors name

User

Posted 25 Oct 2022 at 00:53

So what are you going for??

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