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Possible biochemical recurrence.

User
Posted 08 Sep 2022 at 08:06

 

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

User
Posted 08 Sep 2022 at 08:26

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

Thanks Chris 

User
Posted 08 Sep 2022 at 08:33

 

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 09:52

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 14:55

 

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

User
Posted 26 Sep 2022 at 19:42

 

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 23:33
So what now? Liver biopsy?
User
Posted 27 Sep 2022 at 08:18

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 08:36  | Reason: Not specified

User
Posted 27 Sep 2022 at 18:24
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 19:26
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 19:53

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 20:59

 

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 22:48

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 09:03

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 20:44

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 09:19

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 22:07

 

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 22:52
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 11 Oct 2022 at 00:07

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 08:43  | Reason: Not specified

User
Posted 11 Oct 2022 at 00:17

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 11 Oct 2022 at 00:19  | Reason: Not specified

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

 
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