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Possible biochemical recurrence.

User
Posted 17 Mar 2022 at 18:05

Originally Posted by: Online Community Member

That is reasonable, I know it should be <0.1 but not rising very quickly is ok.

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

User
Posted 17 Mar 2022 at 20:30

I don't know. There are probably plenty of things which promote cancer such as smoking, but once you have it I doubt these change its progress.

Humans have been around for thousands of years and so has cancer. If there was an easy cure like, willow bark for headache, or sulphur baths for scabies we would have cured it by now.

Dave

User
Posted 18 Mar 2022 at 07:29

Originally Posted by: Online Community Member

I don't know. There are probably plenty of things which promote cancer such as smoking, but once you have it I doubt these change its progress.

Humans have been around for thousands of years and so has cancer. If there was an easy cure like, willow bark for headache, or sulphur baths for scabies we would have cured it by now.

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

User
Posted 09 Jun 2022 at 11:05

Okay, hello All

My latest result came back today, so my track record looks like 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 June 2022 = 0.31

If I have calculated it correctly, my PSADT is about 10 months and if progress is linear I will breach the 0.4 threshold in two tests time.

Phsychologically I THINK I am okay with it all. I know that I will have to address the problem at some point, but it doesn’t appear to be racing away and there is plenty of time whilst the sun shines.


Edited to add: I have been too frequent since the RP and am up several times a night. The consultant has suggested Solfenacin 5-10mg daily. Has anyone else tried this?

 

 

Edited by member 09 Jun 2022 at 11:11  | Reason: Not specified

User
Posted 09 Jun 2022 at 11:35
I'm on a combo of tamsulosin (improve flow) and solifinacen (overactive bladder) 5mg, i think it helps, i'm only usually up once per night if i cease drinking at a sensible time.
User
Posted 09 Jun 2022 at 17:49
It seems your doubling time is slowing - to come up from 6 months to 10 months is good.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Sep 2022 at 16:00

 

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.

User
Posted 07 Sep 2022 at 20:33
Your penultimately listed PSA seems to be out of chronological order? I think beating a 2 week wait would be very optimistic as these scans are in demand with limited availability in the UK.
Barry
User
Posted 07 Sep 2022 at 20:49

Originally Posted by: Online Community Member
Your penultimately listed PSA seems to be out of chronological order? I think beating a 2 week wait would be very optimistic as these scans are in demand with limited availability in the UK.

 

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.

 

 

 

 

User
Posted 07 Sep 2022 at 22:37

Piers, I had my PSMA PET booked in on the NHS in midlands, we have medical insurance so asked if there was an earlier appointment. I was surprised to be told it would actually put me further back. As others on here my scan was cancelled hours before the appointment and delayed by a further two weeks. 

 

My PSA of 1.6 only detected one tumor in a lymph node. Our hospital will not test below 0.3 and six months ago the lower limit was 0.5. You are only just above 0.3. A slight delay may even be beneficial rather than detrimental, at what point does cancer change from invisible to visible. My SABR treatment started 5 weeks after the scan.

Hope all goes well.

Thanks Chris 

User
Posted 08 Sep 2022 at 07:06

 

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

User
Posted 08 Sep 2022 at 07:26

Piers, city hospital Nottingham, they use the 1007 tracer.

Thanks Chris 

User
Posted 08 Sep 2022 at 07:33

 

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

User
Posted 08 Sep 2022 at 08:52

Piers, link to facility, mine was definitely a PSMA pet scan. 

https://www.inhealthgroup.com/location/nottingham-inhealth-specialist-imaging-centre/

Thanks Chris 

User
Posted 08 Sep 2022 at 13:55

 

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

User
Posted 26 Sep 2022 at 18:42

 

Okay, so I have had the results of my PSMA PET scan. One year after the last.

It looks like I have a recurrence in the prostate bed. However, there is an 8cm area of tracer uptake on my liver, which is new. The reporting Dr. says that it's an unusual location for PCa and the speed of growth is also unusual. They finished by pointing out that HCC liver cancer also presents in that way!

 

 

 

 

 

 

User
Posted 26 Sep 2022 at 22:33
So what now? Liver biopsy?
User
Posted 27 Sep 2022 at 07:18

MRI first, but then I imagine a biopsy yes.

However, the last scan said I have gynecomsastia and I don't, so there is a chance that it's a mistake.

Speaking to the surgeon last night, if I have to have ADT alongside EBRT I won't recover for 3 years minimum, buy which time I will be north of sixty. So unless there is a BIG advantage to having it I may refuse it.

That said, if the liver lesion turns out to be something nasty like HCC all bets may be off, unless it has been caught early. 8cm doesn't sound that early to the uninitiated, though.

Edited by member 27 Sep 2022 at 07:36  | Reason: Not specified

User
Posted 27 Sep 2022 at 17:24
I have an onco consultation on Monday. I spoke to this one before and didn't much like him, furthermore my surgeon's MDT disagreed with his proposed strategy.

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.

User
Posted 27 Sep 2022 at 18:26
The oncologist looks at the diagnostics and then writes a computer programme that will deliver the RT to the correct places. Whoever does the RT just inputs the computer programme into the system - the machines then do their thing. You get either tiny tattoos or gold seeds so that the RT team can line you up correctly on the machine each day. No one is going to fry you by accident.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Sep 2022 at 18:53

Originally Posted by: Online Community Member
The oncologist looks at the diagnostics and then writes a computer programme that will deliver the RT to the correct places. Whoever does the RT just inputs the computer programme into the system - the machines then do their thing. You get either tiny tattoos or gold seeds so that the RT team can line you up correctly on the machine each day. No one is going to fry you by accident.

 

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!

 

 

User
Posted 29 Sep 2022 at 19:59

 

Okay, I have an appointment with the onco on Monday.

The surgeon said that "points for negotiation" were whether to have ADT and whether or not my lymph nodes should be radioed. Due to my Gleason 8 / PSA 28 starting point the surgeon thinks he will want me to have both.

I have read up extensively on ADT and have my reservations. Whilst the synergy of radio and ADT appears to give better outcomes, the sides of ADT are significant and recovery can be slow. I am 57 now and still active in every sense. I am not sure I can cope with the sides.

What I cannot find out much about is what additional problems I may encounter having my lymph nodes treated. Does anyone have any knowledge please?

User
Posted 29 Sep 2022 at 21:48

Originally Posted by: Online Community Member
What I cannot find out much about is what additional problems I may encounter having my lymph nodes treated

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

User
Posted 30 Sep 2022 at 08:03

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
What I cannot find out much about is what additional problems I may encounter having my lymph nodes treated

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

Thanks Jules

I already go to the gym five days per week and eat as cleanly as practical, but even so I have to work massively hard to remain slim. I always have, ever since I was a young man. I cannot see that situation improving with ADT.

You are nearly 20 years my senior and our lives may well look quite different. I am still working and recently started a new company, which no one else can run on my behalf. I cannot afford to be tired the whole time.

I would never underestimate the benefits of remaining alive! However, as the lesion on my liver has reminded me, there are other things that could finish me off that aren't PCa. It would be a shame to go through 3+ years of poor QoL to then succumb to a thus-far unforeseen health issue.

I think I need to determine what the liver lesion is, see what the onco is saying in terms of predicted success with and without ADT and go from there. If the benefit is only marginal, I may take my chances and pursue ADT if EBRT is unsuccessful.

 

 

 

User
Posted 30 Sep 2022 at 19:44

Originally Posted by: Online Community Member
I think I need to determine what the liver lesion is, see what the onco is saying in terms of predicted success with and without ADT and go from there

 

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

User
Posted 01 Oct 2022 at 08:19

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
I think I need to determine what the liver lesion is, see what the onco is saying in terms of predicted success with and without ADT and go from there

 

Y 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

 

Not from my life as a whole, but my remaining life it could be. :-)

User
Posted 10 Oct 2022 at 21:07

 

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.

 

 

User
Posted 10 Oct 2022 at 21:52
Good news Piers about the liver. That must be a big relief.

I have not heard any cancer doctor refer to prostate cancer being "cured". Whatever the treatment no one can ever be sure there are not a few remaining live cancer cells which will start to grow given enough time. So they won't promise that.

But if you focus on the optimistic, if you have the recommended treatment you are 85% likely to have 5 years without a sign of any problem. That's a lot better than the situation you are in now.

And you have to put the estimates in context. OK 40% of patients had some sort of recurrence after 15 years - but by definition that information comes from treatments done more than 15 years ago. Things will have got better since then! For example the machine on which I had my salvage radiotherapy recently was an amazing new model which started by doing a low resolution CT scan, so it could adjust the settings to optimise accurate delivery to my prostate bed as it was in the machine that day (fine tuning for my exact position, plus small variations in bladder and rectum positions) - at the very least that should minimise side effects compared with older technology, and should ensure no part of the target gets accidentally under-irradiated.

User
Posted 10 Oct 2022 at 23:07

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

User
Posted 10 Oct 2022 at 23:17

For the majority of cancers, all any patient can hope for is eradication for a period of time; if that period of time is long enough to die of something else, it is a win. It is true that PCa can be more persistent in young men but as you are 56 that is a bit of a red herring thrown in by the onco - it is more an issue for men in their 30s and 40s.

Like franci, I think it is worth discussing RT without HT or RT with a short burst of HT - research indicates that 24 or 36 months of HT offers no benefit over 18 months and a significant decrease in quality of life. My husband had 6 months of bical with his salvage RT and is still here to tell the tale 10 years later.

Edited by member 10 Oct 2022 at 23:19  | Reason: Not specified

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

User
Posted 11 Oct 2022 at 07:42

 

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 14:00

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

Thanks Chris 

 

User
Posted 11 Oct 2022 at 14:35

Thanks Chris.

User
Posted 11 Oct 2022 at 15:12

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

Edited by member 11 Oct 2022 at 15:14  | Reason: Mistake

User
Posted 11 Oct 2022 at 17:19
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 19:02

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 20:42

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 22:53

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 07:53

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 08:13  | Reason: Not specified

User
Posted 12 Oct 2022 at 08:19

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 19:35
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 19:45

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 20:12  | Reason: Not specified

User
Posted 12 Oct 2022 at 20:45

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 20:54

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 21:07
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 11:29

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 11:30  | Reason: Not specified

User
Posted 15 Oct 2022 at 06:30

I for one will be interested in their answers! 

User
Posted 15 Oct 2022 at 07:31

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 11:43

 

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 11:52  | Reason: Removal of Doctors name

User
Posted 24 Oct 2022 at 23:53
So what are you going for??
 
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