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User
Posted 19 Sep 2023 at 21:14

Hi all, it's been a while.

I'm reposting this in here as unfortunately it is no longer localized disease.

I now have some tales to tell and some updates. This may not be exactly chronological but it should explain how I've got to where I am now.

I emailed my Urology consultant asking about PET scans. He said I wouldn't get one until I'd had a CT scan. 

I got a C T scan that didn't show anything. I was referred to Oncology and  waited......

Eventually I complained and hey presto got an appointment within a few days. The ONC said I should just start the standard pelvic salvageRT. I asked if I could get the PET scan. (The Trust actually does them in-house) He said he would refer me but warned me that I may be rejected because I didn't met all the criteria. Not sure what that is but possibly PSA 0.5 or less.

After the PET I  returned to see him and hey guess what, two met nodes "higher up" that the RT wouldn't have touched. They are small but in inaccessible locations. He tells me this is a problem but he'll refer me for RT and the team will discuss options. Meanwhile I'm put on Bic and Decapeptyl 3 monthly. After three months my PSA is less than 0.1. Phew.

Last week I got called up for my RT planning. I assumed that the MDT had come up with some options and all would be revealed at this appointment. When I mentioned it to the RT nurse she knew nothing about it and offered to track my ONC down in clinic so I could speak to him. I went into his office where he announced that the team thought I should be having Chemo. Duh! When was he going to tell me? I had no appointments pending with him. This was just a chance meeting. 

Anyway this brings me to now. He has given me some reading material to consider. Either Docetaxel or Enzalutamide. I'm a reasonably fit 67 year old so I'm thinking chemo. One of the factors is that I've heard that Enza can follow chemo but not the other way around. Also I got the impression that the ONCs preference would be chemo.

Your thoughts, feelings, advice would be most welcome.

User
Posted 23 Sep 2023 at 06:40

There are two ways to use Enzalutamide.

Originally, it was started only when the base level hormone therapy injections failed to completely control the cancer and your PSA started rising. However, we now know it usually keeps hormone therapy working for longer if you start it up front with the hormone therapy injections well before they start failing.

Chemo can be used before and/or after Enzalutamide. If used before, this would probably mean Enzalutamide would be deferred until after the hormone therapy injections start becoming less effective. The chemo would likely have pushed that date further out. The Enzalutamide wouldn't work for as long, but the up-front chemo would have extended the time before you needed to start taking it. Chemo can be repeated again later on if it worked well first time, and you're still well enough to handle it. Enzalutamide can only be used once until it stops working (although that can be a long time if it is started up-front).

Another possibility which you haven't mentioned so it might not be on offer is to start Enzalutamide now and to do up-front chemo - called triple play (hormone therapy, enhanced hormone therapy, and chemo). That would probably give the longest period of hormone therapy working to control the disease. This is along the lines of hit it with everything early on, which appears to knock it back for longest. I'm not sure where the NHS is with adopting this, but many successful trials have run. It might be viewed that your spread of cancer isn't serious enough to benefit well enough from this.

However, there's another factor to think about here, and that's side effects. Each of these treatments takes a toll. The hormone therapy you don't have much choice over, so that one you just have to live with. Although Enzalutamide has a long list of side effects, they're mostly the same as the hormone therapy injections and you are unlikely to get any more from the Enzalutamide except a bit more fatigue. Obviously, this varies from person to person though. Chemotherapy is a more taxing treatment. It has the side effects during treatment, things like hair loss and periods of not feeling great, and periods of avoiding infections or possibly dealing with infections. It can also cause some permanent side effects, such as peripheral neuropathy, which is reduction/loss of sensation in hands and/or feet, and possibly pins and needles. In comparisons between having up-front chemo and having up-front enhanced hormone treatment with Abiraterone (Enzalutamide is probably similar, but Abiraterone was available first so more data), the patients who took the chemo had a significantly worse drop in quality of life (QoL) during chemo treatment compared with up-front Abiraterone. After the chemo, QoL recovers, but never gets back quite to the level of the Abiraterone patients, because some chemo patients have permanent symptoms like peripheral neuropathy.

If you are looking for longest life, that would probably be the triple play - hormone injections, Enzalutamide, and chemo up-front, but that might not be offered - I think it's still regarded as experimental, and possibly aimed at those diagnosed with significantly more spread than yours. You have a chance of permanent chemo side effects though.

If you are looking at a good compromise with QoL and length of life, that's probably up-front Enzalutamide. If/when that eventually stops working, chemo is still an option, with the proviso that you would probably be significantly older, and chemo may be less suitable for you at that point because we tend to accumulate other medical conditions as we age.

So it's a bit of a gamble, and also how you value longevity versus QoL.

Edited by member 23 Sep 2023 at 06:45  | Reason: Not specified

User
Posted 21 Sep 2023 at 18:53

Hello

Enzalutimide is a very effective drug for many men and yes it appears you can have chemotherapy after Enzalutimide the two treatments work in different ways .I would be inclined to have a chat with my consultant or designated nurse about this to clarify the situation should Enzalutimide fail if you choose to take it .

I have been on Enzalutimide for over 3 years now if you read my profile you will get the whole picture .My PSA dropped like a stone to undetectable within 4 weeks of starting it and there it has remained for just over three years now .

 

Edited by member 21 Sep 2023 at 19:00  | Reason: Not specified

User
Posted 21 Sep 2023 at 18:27

Hi

I was 52 when diagnosed with a psa of 2100 was given same option that you have been given opted for enza,have now been on the tablets for roughly 13months after psa dropping to around 0.5 it's now on the slow rise at 5.37 please read my profile for more info.

Regards phil

User
Posted 22 Sep 2023 at 03:21

It could be that your oncologist thinks there's a chance that the chemo will knock out mets that the PET scan picked up and the RT can't access. The chemo is sometimes used before RT to wipe out any small mets that haven't showed up on the PET scan. In your case it might be optimistic to hope for the chemo to obliterate the cancer but it's worth asking what the aim is.

What I do not understand it that 5 years ago you appear to have been diagnosed T3bN1 (Gleason score?) and even though that tells you that you at the very least had locally advanced PCa, apparently all they did was to remove the prostate and send you away. Your urologist at the time could have done better. The oncologist you're dealing with now has been handed a problem that could have been treated better 5 years ago.

Now, you will possibly have treatment similar to Librajc if your cancer is deemed not to be curable. Possible drug treatment might include aberaterone and prednisone in combination with enzalutamide. Have a look at the Stampede trial for a general idea of possibilities. You have been classed as T3bN1 in 2018 so it seems there was some spread outside the capsule at the time of your RP and it's not clear if that spread was treated then or whether your current mets are the same as those found in 2018. A 5 year wait after a T3bN1 staging is worrying.

Jules

edit: From your other thread here and your profile, it looks very much like you've got advanced prostate cancer with spread in the prostate bed and also remote mets. I think you need a second opinion from a different oncologist.

Edited by member 22 Sep 2023 at 06:23  | Reason: Not specified

User
Posted 23 Sep 2023 at 02:45

... and good evening Clive

I should have picked up the disappearance of the RT option from your first post but somehow I thought they'd just ruled out treating some mets, rather than ruling out RT completely .

Enzo is great and it will most certainly reduce your psa to near nothing. Long term, it will probably become less effective. Chemo first should knock out some of the cancer while enzo and friends will hold it at bay, even if they can't kill it. In a few years we might be adding immunotherapy to the arsenal. Maybe your rather tardy planning team can give you a long term plan with options to suit your life.

Jules

Edited by member 23 Sep 2023 at 03:38  | Reason: Not specified

User
Posted 23 Sep 2023 at 09:34

Thanks Andy. A sobering post and something that deserves to be pinned somewhere for permanent reference.

Jules

Edited by member 23 Sep 2023 at 10:58  | Reason: Not specified

User
Posted 23 Sep 2023 at 12:46

Hi

Im stage 4 with mets in hip lymph nodes, ribs, spine and sacrum. I’m on Decapeptyl 22SR implant and daily enzalutamide. Usual side effects: fatigue, ED, breast enlargement, fuzzy thinking, insomnia, bone pain etc. That said, I’m still here!

Good luck on your journey and decision.

Neil

User
Posted 24 Sep 2023 at 14:13

Clive

i was just on Decapeptyl but my PSA began to rise in September 2022. I had staging snd bone scans that showed spread to my skeleton so I basically got told I was going on enzalutamide. I’d already been told about it and given a lot of information by my onc. Started taking it in January 2023.

I’ve had the side effects a while due to Decapeptyl - similar problems. I did feel ner tired at first but that has waned slightly but my fuzzy thinking and memory problems have slowly increased.

it’s a pain but my PSA is consistently <0.05 so I’m sticking with it.

Hopd that helps, Neil

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User
Posted 21 Sep 2023 at 18:27

Hi

I was 52 when diagnosed with a psa of 2100 was given same option that you have been given opted for enza,have now been on the tablets for roughly 13months after psa dropping to around 0.5 it's now on the slow rise at 5.37 please read my profile for more info.

Regards phil

User
Posted 21 Sep 2023 at 18:53

Hello

Enzalutimide is a very effective drug for many men and yes it appears you can have chemotherapy after Enzalutimide the two treatments work in different ways .I would be inclined to have a chat with my consultant or designated nurse about this to clarify the situation should Enzalutimide fail if you choose to take it .

I have been on Enzalutimide for over 3 years now if you read my profile you will get the whole picture .My PSA dropped like a stone to undetectable within 4 weeks of starting it and there it has remained for just over three years now .

 

Edited by member 21 Sep 2023 at 19:00  | Reason: Not specified

User
Posted 22 Sep 2023 at 03:21

It could be that your oncologist thinks there's a chance that the chemo will knock out mets that the PET scan picked up and the RT can't access. The chemo is sometimes used before RT to wipe out any small mets that haven't showed up on the PET scan. In your case it might be optimistic to hope for the chemo to obliterate the cancer but it's worth asking what the aim is.

What I do not understand it that 5 years ago you appear to have been diagnosed T3bN1 (Gleason score?) and even though that tells you that you at the very least had locally advanced PCa, apparently all they did was to remove the prostate and send you away. Your urologist at the time could have done better. The oncologist you're dealing with now has been handed a problem that could have been treated better 5 years ago.

Now, you will possibly have treatment similar to Librajc if your cancer is deemed not to be curable. Possible drug treatment might include aberaterone and prednisone in combination with enzalutamide. Have a look at the Stampede trial for a general idea of possibilities. You have been classed as T3bN1 in 2018 so it seems there was some spread outside the capsule at the time of your RP and it's not clear if that spread was treated then or whether your current mets are the same as those found in 2018. A 5 year wait after a T3bN1 staging is worrying.

Jules

edit: From your other thread here and your profile, it looks very much like you've got advanced prostate cancer with spread in the prostate bed and also remote mets. I think you need a second opinion from a different oncologist.

Edited by member 22 Sep 2023 at 06:23  | Reason: Not specified

User
Posted 22 Sep 2023 at 07:15

Hi Jules, thanks for the reply. I will be emailing the oncologist today asking if he will explain the team's decision making. 

For my information, what do you think could have been done better 5 years ago? I was very much led by the clinicians believing they had all the answers. I was offered adjuvant RT but my surgeon recommended I hold off until the day I needed it i.e. sRT. He did warn me that there was a good chance that day would come given my post op staging. The only scan I had at the time was a self-funded mpMRI for template biopsy targeting. 

My recent PSMA PET scan shows four areas of concern but nothing on the prostate bed.

 

User
Posted 22 Sep 2023 at 09:48

Originally Posted by: Online Community Member
For my information, what do you think could have been done better 5 years ago?

Clive

It would very much have depended on where the mets were at that stage [if there were any]. If they were limited to lymph glands close to the prostate, it might have been possible to treat the lymph glands, the prostate [and at the same time the prostate bed] with RT. The T3bN1 indicates that cancer had already escaped from the prostate, possibly into seminal vesicles, possibly into the prostate bed and also into lymph glands somewhere. [Were you ever given an explanation of the spread details?].  I'd say a PET PSMA scan at that stage would have been a great idea because it would have shown up any spread and made it possible to give you curative treatment 4 years ago. It's very possible that the "higher up" nodes could well have formed in the 5 years since your initial treatment. It's a long time to leave a leave a cancer the chance to spread when that spread can go anywhere.

The four areas of concern include the two "higher up" mets plus a couple of others. Where are they?

Jules

User
Posted 22 Sep 2023 at 10:02

Hi Jules, thanks for your input. The surgery did remove local lymph nodes and SV. I was on 3 monthly psa tests since which remained undetectable for 4 years which  I hope is a plus on my side. The idea of  PSMA PET in 2018 is a non-starter. You have to sell your children to get one now😂

There is a focal area of tracer uptake in relation to an irregular nodule on the right posterolateral aspect of the urinary bladder which measures 18 mm. 

No abnormal tracer activity in the prostate bed.

There is a small layered closure lymph node inmediately anterior to the L3 vertebral

body showing moderate uptake with a smaller node at the same level anterior to the aorta

and inferior vena cava, showing mild/moderate uptake (image 157). There is a small left

para-aortic lymph node in the upper retroperitoneum adjacent to the left adrenal gland

also showing moderate uptake (image 137) . These are of concern for disease involvement

No further convincing areas of abnormal tracer accumulation.

The liver appears clear.

No pulmonary nodules. No sinister skeletal lesion evident.

Appearances are in keeping with tracer avid recurrence in the right side of the pelvis

with suspicion of involved small volume retroperitoneal nodes

 

User
Posted 23 Sep 2023 at 00:22

Clive,

in fairness to the specialists who did your 2018 surgery, your T3bN1 staging could have indicated that your cancer had moved from locally advanced to advanced and curative treatment was out of reach even then. It would be frustrating if the inaccessible mets had grown since 2018 but it's only possible to deal with the here and now.

Am I right in understanding that your team has now completely dropped the idea of any RT follow up and jumped straight to chemo + drugs?

Jules

User
Posted 23 Sep 2023 at 00:42

Good morning Jules, yes, correct. The RT has been dropped and I have been asked to choose between Enza and chemo. The onc said after the PET scan that RT wouldn't be suitable so I was very suprised when I got called for the planning scan. I then assumed that the RT dept. had come good with RT options for those two nodes but it now looks like that was a mistake. I'm now trying to make that decision quickly with a view to getting the process (whichever one) underway asap

User
Posted 23 Sep 2023 at 02:45

... and good evening Clive

I should have picked up the disappearance of the RT option from your first post but somehow I thought they'd just ruled out treating some mets, rather than ruling out RT completely .

Enzo is great and it will most certainly reduce your psa to near nothing. Long term, it will probably become less effective. Chemo first should knock out some of the cancer while enzo and friends will hold it at bay, even if they can't kill it. In a few years we might be adding immunotherapy to the arsenal. Maybe your rather tardy planning team can give you a long term plan with options to suit your life.

Jules

Edited by member 23 Sep 2023 at 03:38  | Reason: Not specified

User
Posted 23 Sep 2023 at 06:40

There are two ways to use Enzalutamide.

Originally, it was started only when the base level hormone therapy injections failed to completely control the cancer and your PSA started rising. However, we now know it usually keeps hormone therapy working for longer if you start it up front with the hormone therapy injections well before they start failing.

Chemo can be used before and/or after Enzalutamide. If used before, this would probably mean Enzalutamide would be deferred until after the hormone therapy injections start becoming less effective. The chemo would likely have pushed that date further out. The Enzalutamide wouldn't work for as long, but the up-front chemo would have extended the time before you needed to start taking it. Chemo can be repeated again later on if it worked well first time, and you're still well enough to handle it. Enzalutamide can only be used once until it stops working (although that can be a long time if it is started up-front).

Another possibility which you haven't mentioned so it might not be on offer is to start Enzalutamide now and to do up-front chemo - called triple play (hormone therapy, enhanced hormone therapy, and chemo). That would probably give the longest period of hormone therapy working to control the disease. This is along the lines of hit it with everything early on, which appears to knock it back for longest. I'm not sure where the NHS is with adopting this, but many successful trials have run. It might be viewed that your spread of cancer isn't serious enough to benefit well enough from this.

However, there's another factor to think about here, and that's side effects. Each of these treatments takes a toll. The hormone therapy you don't have much choice over, so that one you just have to live with. Although Enzalutamide has a long list of side effects, they're mostly the same as the hormone therapy injections and you are unlikely to get any more from the Enzalutamide except a bit more fatigue. Obviously, this varies from person to person though. Chemotherapy is a more taxing treatment. It has the side effects during treatment, things like hair loss and periods of not feeling great, and periods of avoiding infections or possibly dealing with infections. It can also cause some permanent side effects, such as peripheral neuropathy, which is reduction/loss of sensation in hands and/or feet, and possibly pins and needles. In comparisons between having up-front chemo and having up-front enhanced hormone treatment with Abiraterone (Enzalutamide is probably similar, but Abiraterone was available first so more data), the patients who took the chemo had a significantly worse drop in quality of life (QoL) during chemo treatment compared with up-front Abiraterone. After the chemo, QoL recovers, but never gets back quite to the level of the Abiraterone patients, because some chemo patients have permanent symptoms like peripheral neuropathy.

If you are looking for longest life, that would probably be the triple play - hormone injections, Enzalutamide, and chemo up-front, but that might not be offered - I think it's still regarded as experimental, and possibly aimed at those diagnosed with significantly more spread than yours. You have a chance of permanent chemo side effects though.

If you are looking at a good compromise with QoL and length of life, that's probably up-front Enzalutamide. If/when that eventually stops working, chemo is still an option, with the proviso that you would probably be significantly older, and chemo may be less suitable for you at that point because we tend to accumulate other medical conditions as we age.

So it's a bit of a gamble, and also how you value longevity versus QoL.

Edited by member 23 Sep 2023 at 06:45  | Reason: Not specified

User
Posted 23 Sep 2023 at 09:18

Very well explained Andy and I totally agree with everything you say,your age and fitness does play a part in what you decide to do.

Phil

 

User
Posted 23 Sep 2023 at 09:34

Thanks Andy. A sobering post and something that deserves to be pinned somewhere for permanent reference.

Jules

Edited by member 23 Sep 2023 at 10:58  | Reason: Not specified

User
Posted 23 Sep 2023 at 10:25

Cheers Andy, you've managed to put nicely into words all the stuff that's swirling around in my head. 

User
Posted 23 Sep 2023 at 12:46

Hi

Im stage 4 with mets in hip lymph nodes, ribs, spine and sacrum. I’m on Decapeptyl 22SR implant and daily enzalutamide. Usual side effects: fatigue, ED, breast enlargement, fuzzy thinking, insomnia, bone pain etc. That said, I’m still here!

Good luck on your journey and decision.

Neil

User
Posted 23 Sep 2023 at 19:27

Thanks for this Neil. Can I ask how long you've been on it? Did the side effects peak and then back off at all or are they more or less constant. Also, did you choose this route in preference to chemo?

Clive 

User
Posted 24 Sep 2023 at 14:13

Clive

i was just on Decapeptyl but my PSA began to rise in September 2022. I had staging snd bone scans that showed spread to my skeleton so I basically got told I was going on enzalutamide. I’d already been told about it and given a lot of information by my onc. Started taking it in January 2023.

I’ve had the side effects a while due to Decapeptyl - similar problems. I did feel ner tired at first but that has waned slightly but my fuzzy thinking and memory problems have slowly increased.

it’s a pain but my PSA is consistently <0.05 so I’m sticking with it.

Hopd that helps, Neil

 
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