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Radiotherapy or Chemotherapy as my 2nd option?

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User
Posted 26 Apr 2019 at 17:39

In November 2018 I was diagnosed with Prostate Cancer:   4+4. T3bN1M0 - Aged 55.  I have been on hormone treatment for just over over 4 months (2 injections so far) and my PSA has gone down from 67 to 0.95 

Oncologist No1 recommended radiotherapy as the next steps.  (This based on the initial MRI, biopsy and bone scan).

Oncologist No2 recommended chemotherapy as the next step and radiotherapy thereafter. (After an additional PSMA Pet/Ct scan). The Chemotherapy recommended is using Docetaxel this based on initial findings of the Stampede trial.  

Clearly both approaches are valid.  Oncologist No2 felt that owing to the fact that my cancer was very extensive it was less likely that it was only contained to the pelvic area (we know it is locally extensive and is not just contained to the prostate),  and therefore Chemotherapy would be a good option.  Oncologist No1 agreed that there was some merit in this approach.  With both oncologists in agreement I have decided to go down this path.

I have been trying to locate a global (or UK only) database that contains details of people who have been on this journey before and how it has gone.?    Within oncology there seems to be many options one can take and I do appreciate that every individual is different.

It seems to me trials are very closely monitored and documented.   I also understand that there is a “red flag” system for problems which have arisen based on drugs which have been approved by the authorities.    What i can’t find is results/outcomes from patients not on trials.  

What I would like to understand is:

Do we have a centralised government controlled IT database that contains information regarding outcomes of patients going down a particular path and if not why not?   After all the majority of patients are not part of trials but are following recommendations from their oncologists. 

I suppose what I am suggesting is for my medical information (but without my personal details) to be made available to those that decide to take the same journey that I am on, so that they can decide if they want to do the same and that centrally this information can be reviewed/analysed so that we can learn what works the best for the majority. 

Any thoughts ..  and if this is already in place please can you send me the link!

Thanks

   

 

 

 

 

 

 

 

User
Posted 26 Apr 2019 at 17:39

In November 2018 I was diagnosed with Prostate Cancer:   4+4. T3bN1M0 - Aged 55.  I have been on hormone treatment for just over over 4 months (2 injections so far) and my PSA has gone down from 67 to 0.95 

Oncologist No1 recommended radiotherapy as the next steps.  (This based on the initial MRI, biopsy and bone scan).

Oncologist No2 recommended chemotherapy as the next step and radiotherapy thereafter. (After an additional PSMA Pet/Ct scan). The Chemotherapy recommended is using Docetaxel this based on initial findings of the Stampede trial.  

Clearly both approaches are valid.  Oncologist No2 felt that owing to the fact that my cancer was very extensive it was less likely that it was only contained to the pelvic area (we know it is locally extensive and is not just contained to the prostate),  and therefore Chemotherapy would be a good option.  Oncologist No1 agreed that there was some merit in this approach.  With both oncologists in agreement I have decided to go down this path.

I have been trying to locate a global (or UK only) database that contains details of people who have been on this journey before and how it has gone.?    Within oncology there seems to be many options one can take and I do appreciate that every individual is different.

It seems to me trials are very closely monitored and documented.   I also understand that there is a “red flag” system for problems which have arisen based on drugs which have been approved by the authorities.    What i can’t find is results/outcomes from patients not on trials.  

What I would like to understand is:

Do we have a centralised government controlled IT database that contains information regarding outcomes of patients going down a particular path and if not why not?   After all the majority of patients are not part of trials but are following recommendations from their oncologists. 

I suppose what I am suggesting is for my medical information (but without my personal details) to be made available to those that decide to take the same journey that I am on, so that they can decide if they want to do the same and that centrally this information can be reviewed/analysed so that we can learn what works the best for the majority. 

Any thoughts ..  and if this is already in place please can you send me the link!

Thanks

   

 

 

 

 

 

 

 

User
Posted 26 Apr 2019 at 19:22
My story may be worth a read. Click my picture and read my profile if you like. I had surgery as they didn’t realise I was so advanced. I was G9T4N1MxR1 after surgery. PSA still racing immediately after surgery. I’ve refused 6 offers of RT based on no offer of cure. I’ve had the best scans that have seen nothing in the prostate area. So I’ve just lived my life for 4 years and bl**dy enjoyed it. Sadly now I think the N1 has caught up with me with lymph’s showing in abdomen. Who knows if RT might have helped ? Facing the HT Chemo dilemma myself after further scans in 2 weeks. Good luck
User
Posted 27 Apr 2019 at 10:28

Ryman

I was diagnosed Stage 4 on 20/8/18 went straight onto Hormone Therapy, started 6 Chemo (docataxel) sessions on 2/10/18 and 20 radiotherapy fractions between 26/3/19 and 24/4/19 (55.4GY treatment dose).

Chemo wiped me out a bit so I agreed with my Onco that I should have a fortnights holiday before starting the RT, this did me the world of good and I'm feeling very well following the chemo and radiotherapy.

Just on 3 monthly prostap jabs now until the HT stops working.

 

John

User
Posted 16 Oct 2020 at 16:51

Gwrtheyrn,   How are things going? Has your PSA come down? 

User
Posted 18 Oct 2020 at 22:29

I had 5 cycles of chemotherapy starting 2 days before Christmas - it was meant to be 6 but the last one was cancelled due to the pandemic. 

It was then a couple of months later that I had radiotherapy to the prostate and pelvic region, by which time my PSA was down to 0.1, but that was only because I’d added low dose bicalutamide to the Zoladex injections, which had only brought it down to around 1 or 2 (it was over 300 at the time of diagnosis!)
First follow up appointment tomorrow (by phone) but I won’t have a PSA test just yet apparently.

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User
Posted 26 Apr 2019 at 18:22

Whilst I cannot answer your questions fully I would think ADT plus early chemotherapy followed by radiotherapy would be the way to go.

http://www.stampedetrial.org/media/1158/stampedeparticipantsummary010216.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5424862/pdf/10.1177_1758834017692779.pdf

Hope others answer too.

All the best,

Ido4

Edited by member 27 Apr 2019 at 00:18  | Reason: Not specified

Ido4

User
Posted 26 Apr 2019 at 19:22
My story may be worth a read. Click my picture and read my profile if you like. I had surgery as they didn’t realise I was so advanced. I was G9T4N1MxR1 after surgery. PSA still racing immediately after surgery. I’ve refused 6 offers of RT based on no offer of cure. I’ve had the best scans that have seen nothing in the prostate area. So I’ve just lived my life for 4 years and bl**dy enjoyed it. Sadly now I think the N1 has caught up with me with lymph’s showing in abdomen. Who knows if RT might have helped ? Facing the HT Chemo dilemma myself after further scans in 2 weeks. Good luck
User
Posted 26 Apr 2019 at 21:32

Originally Posted by: Online Community Member
I have been trying to locate a global (or UK only) database that contains details of people who have been on this journey before and how it has gone.? Within oncology there seems to be many options one can take and I do appreciate that every individual is different.

It seems to me trials are very closely monitored and documented. I also understand that there is a “red flag” system for problems which have arisen based on drugs which have been approved by the authorities. What i can’t find is results/outcomes from patients not on trials.

What I would like to understand is: Do we have a centralised government controlled IT database that contains information regarding outcomes of patients going down a particular path and if not why not? After all the majority of patients are not part of trials but are following recommendations from their oncologists.

The problem is that for the diagnosis you have been given, very few men will have been offered the options you have in front of you, except as part of a trial. Chemo at your stage is a very recent development - until maybe 4 years ago, chemo was reserved for men in the end-of-life stages in an attempt to reduce symptoms and extend life a little bit. RT with an N1 diagnosis has been perceived as shutting the stable door after the horse has bolted until maybe the last 2-3 years, and is still not approved by NICE (unless there is confidence that the affected nodes are within the pelvis) so technically only available as part of a trial although more oncos are trying it anyway. If it wasn't for the good men who agree to join the Stampede trial, you would only be offered long-term HT with your diagnosis and in some areas of England, that is still the only thing that would be available.

If you were my friend or brother, I would be encouraging you to go chemo followed by RT - the results from early chemo trials have been fantastic for most men involved. 

Edited by member 26 Apr 2019 at 21:45  | Reason: Not specified

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

User
Posted 26 Apr 2019 at 22:47
If your cancer was thought to be confined to an area where it could be successfully dealt with by RT, it would be reasonable to try this first. However, this appears not to be the case, so maybe the chemo first with holding back RT to consider how it might best be used after chemo may be the better approach.

There are many aspects of PCa that are dealt with in different ways in various parts of the country and some oncologists are more progressive in their thinking and adoption of treatment than others. I think it unlikely that there will be a data base that you seek but you could contact the Department of Health and social Care for their views.

Barry
User
Posted 27 Apr 2019 at 10:28

Ryman

I was diagnosed Stage 4 on 20/8/18 went straight onto Hormone Therapy, started 6 Chemo (docataxel) sessions on 2/10/18 and 20 radiotherapy fractions between 26/3/19 and 24/4/19 (55.4GY treatment dose).

Chemo wiped me out a bit so I agreed with my Onco that I should have a fortnights holiday before starting the RT, this did me the world of good and I'm feeling very well following the chemo and radiotherapy.

Just on 3 monthly prostap jabs now until the HT stops working.

 

John

User
Posted 27 Apr 2019 at 12:20

Hi,

Diagnosed May 2018 T3bN1M0 but changed to T3bN1M1 after PET/CT Scan at Marsden in June 2018. My Node spread was outside the pelvic area so RT was not an option I was offered.

Signed up for the STAMPEDE Trail but only got placed on the control arm not the current trails (Metaformin/Hormone patches)

Started Prostap injections late June with PSA at 108 together with Chemo (6 sessions Docetaxtal) plus steroid tablets which finished November 2018 with PSA reading of 1.4

Tolerated Chemo very well with the occasional Afternoon off once per cycle when feeling wiped out.

PSA has now settled to between 1.6 & 1.8 and continuing with HT with with only side effects off weight gain, ED and a slight loss of stamina all is good.

From what I've learned from this forum and reading other articles I would not have changed the way my treatment went and if RT had been possible for my case I would have held it back for when I move onto the next stage when the HT stops working or I need to zap some mets that may occur later.

Good luck with how it goes.

Andy

User
Posted 16 May 2019 at 16:34

I have started treatment today and just been told that because I have a 'hot' node as well they will give me hormones, chemo then RT. I asked about the usual stuff but to my question about ED my consultant said ED would be permanent if I have all three!! is this true?? Anyone else had this problem?

Chris

 

User
Posted 16 May 2019 at 16:54

HT will give you issues whilst you are on it, but they are expected to clear up afterwards. Are you on it for life or are you on a curative treatment plan? You must follow a penile rehabilitation program whilst you have ED on HT to preserve function for when you finish and recover from HT, or you can cause permanent damage by not having erections for a long time.

RT doesn't normally give any immediate ED, but it can cause it to come on years later, although not everyone gets this. There maybe something special about your case. You will need to ask the consultant why.

I've no idea what impact chemo has. Someone else will need to answer that. Traditionally, chemo was used by people on lifelong HT and so have lifelong ED due to the HT. However, it now seems to be coming up on curative treatment paths too.

 

User
Posted 16 May 2019 at 17:18

I have to see onco yet as just come from urology consultant but as far as I can make out I'm curative, not going to be on HT for life and had no ED issues before. I've read everything on here and gather that mostly ED is revered after treatments that's why I was stunned with the word permanent!! Totally against most posters experience, chemo as well as HT RT seems to have less posts to look through though.

Chris

User
Posted 16 May 2019 at 19:25
Chemo doesn’t cause ED. HT usually causes loss of libido but does not cause ED. RT usually causes ED but not until years later.

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

User
Posted 16 May 2019 at 19:51

Originally Posted by: Online Community Member
Chemo doesn’t cause ED. HT usually causes loss of libido but does not cause ED. RT usually causes ED but not until years later.

Very reassuring, thanks

User
Posted 06 Dec 2019 at 19:38

aI imagine that oncology teams keep outcome records these days, and may report their experiences at meetings. I agree that it would be interesting to collate and publish those data.

Regarding your treatment decisions, I’ve just decided to have early chemo before RT, though the potential side effects are certainly daunting!

User
Posted 16 Oct 2020 at 16:51

Gwrtheyrn,   How are things going? Has your PSA come down? 

User
Posted 18 Oct 2020 at 22:29

I had 5 cycles of chemotherapy starting 2 days before Christmas - it was meant to be 6 but the last one was cancelled due to the pandemic. 

It was then a couple of months later that I had radiotherapy to the prostate and pelvic region, by which time my PSA was down to 0.1, but that was only because I’d added low dose bicalutamide to the Zoladex injections, which had only brought it down to around 1 or 2 (it was over 300 at the time of diagnosis!)
First follow up appointment tomorrow (by phone) but I won’t have a PSA test just yet apparently.

 
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