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What are the options?

User
Posted 08 Sep 2024 at 08:58

My husband has a CT scan to check for any spread the week after next and I’m trying to get my head around what options he is likely to be offered. 


Background: He is 63, went to GP because of problems with flow & frequency particularly at night.  PSA 24.7, Gleason 9(4+5), biopsy T3 with 10/13 positive cores, bone scan clear, MRI showing local lymph nodes clear. 


I gather from some of the forum posts that the flow/frequency issues seem to have an impact on which treatments may be offered but can’t find anything in the information booklets that clarify this. Can anyone help please?? 


Thanks in advance. This waiting phase really is the pits!! 🀯 

User
Posted 08 Sep 2024 at 14:10

Flow problems mean that a prostatectomy would have the additional advantage of sorting those out too. Conversely, radiotherapy (particularly brachytherapy) might make flow issues worse during treatment, although that's resolvable with a catheter. However, a prostatectomy with a T3a G9 diagnosis is the highest risk of recurrence needing salvage radiotherapy. If he's T3b,* they won't offer surgery.


If you go for radiotherapy (and hormone therapy), they would usually fix the flow problems first, because fixing them afterwards has a higher risk of damage to urinary continence. However, with a T3 G9 diagnosis, they might not want to wait to do that unless they can fit it in immediately as you start on the hormone therapy.


You don't have the full diagnosis yes, and in particular, it's very significant if it's T3a or T3b * which you haven't said. This means there are pros and cons for both, and not an obvious winner. Make sure you talk with both surgery (prostatectomy) and oncology (radiotherapy), and compare what they both recommend.


I would certainly ask oncology about HDR Boost, which is a combination of external beam radiotherapy and high dose rate brachytherapy, which in my view is a good fit for many T3{a or b} G9 cases, and can even cope with a little bit of N1 (one or two local lymph nodes). It can optionally include radiotherapy to all the pelvic lymph nodes at a low prophylactic dose to kill off any micro-mets (mets too small to show on any scans) which have already got into pelvic lymph nodes which is a significant risk with T3 G9. HDR Boost is only done at the large radiotherapy treatment centres, so you might need referring somewhere else for that treatment. If your centre doesn't do, the oncologists there might not know much about it, but you can ask for a second opinion from a centre which does. If there is more extensive N1, then they would probably treat it all with external beam radiotherapy.


*T3a means broken out of the prostate or significantly bulging the prostate, but not grown as far as other organs. T3b means grown into seminal vesicles.

Edited by member 08 Sep 2024 at 14:23  | Reason: Not specified

User
Posted 08 Sep 2024 at 13:13

Hi Kazzy.


Our site states that pre-existing conditions, that may affect suitability for surgery include, heart, lung and bowel disease, also previous major surgery to the abdomen. Being obese can also cause problems. If surgery is an option you'd get a pre-assessment to confirm that everything is in order to proceed. 

User
Posted 08 Sep 2024 at 13:46

Hi I had both flow and frequency symptoms prior to diagnosis (T2c)N0 M0.  I opted for surgery. My mind was get rid of it.

User
Posted 14 Sep 2024 at 20:39
I was T3b with gleason 8 on diagnosis. As has been mentioned as there was spread to seminals no point to surgery so it was RT/HT for me. I had flow problems and oncologist put me forward for TURP (bit of prostate cut away) as RT would make the problem worse. After the TURP gleason went to 9. The TURP procedure was pretty straightforward, two night stay usually in hospital, catheter whilst in hospital, show you can urinate enough with catheter out and home. Leading up to TURP, i self catheterised which was quite staighfoward as well once the, fear I suppose, had been beaten after a couple of times. I also had Tamsulosin prior to TURP which helped. No problem since and the procedure was in 2016.
Peter
User
Posted 15 Sep 2024 at 15:20

Hi Kazzy60,


Bracytherapy Boost was ruled out for me because of my poor flow rate. I didn’t think it was too bad actually but they were concerned that I might need long term catheter. I have a friend who had this treatment, went into retention after it and it caused a lot of problems.

User
Posted 15 Sep 2024 at 21:03

Kazzy, I’m not medically trained so am just describing my experiences on my journey. Andy62 describes what might happen with HDR Brachytherapy so I guess it’s up to your consultant to decide if it’s worth the risk?


I regarded my optimum treatment(having had surgery being ruled out by the MDT) was HDR Boost, followed by 37 sessions of RT to treat the prostate and the pelvic bed. In the end, both these were ruled out so I ended up with only 20 sessions to treat the Prostate and Seminal Vesicles only. This disappointed me but I take some comfort in the fact that my Oncologist (not allowed to name him on here) thought the risk to my health was too great to attempt it. I just have to live with this and hope it’s done the job…I guess I’m going to find out soon🀞


My Oncologist told me not to ‘overthink’ things and ATM I think you’re just going to have to play the waiting game. I know it’s not easy so just try and distract yourself as best you can.


All the best to both of you,


Derek

User
Posted 16 Sep 2024 at 18:53

Kazzy, I did reply yesterday but doesnt look like it 'went'. I was diagnosed Oct 2015, went on the HT etc right away. Ended up having abiraterone, enzalutimide, prednisolone added to Zoladex as part of trial. I had the TURP in May 2016. RT started 1 Dec 2016 which is obviously a fair bit longer than normal. I could have had the RT sooner but it was delayed simply by choice as I got married in November. Oncologist quite happy with this as there was no evidence of any threat and the ADT working as it should. When first diagnosed you're in panic mode and want everything now but I accepted the consultants comments saying no rush in my case, Zoladex etc good until we're ready. Admittedly I am on the laid back side of things and fortunate that treatment was doing what it should.


Peter


 

User
Posted 16 Sep 2024 at 20:10

Thanks Peter. That’s reassuring, and I’m delighted you’re doing so well. 😊

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User
Posted 08 Sep 2024 at 13:13

Hi Kazzy.


Our site states that pre-existing conditions, that may affect suitability for surgery include, heart, lung and bowel disease, also previous major surgery to the abdomen. Being obese can also cause problems. If surgery is an option you'd get a pre-assessment to confirm that everything is in order to proceed. 

User
Posted 08 Sep 2024 at 13:20

Thanks Adrian. Yes I did see he was ok for these. Its just that I’ve seen flow issues referred to in forum posts as though they had impacted on the options available but can’t find them now I’m looking for them. I should really just wait till we speak to the consultant, but I tend not to be able to sleep when these things are buzzing around in my head, which is why I asked. πŸ˜‚   Thanks for replying. Hope alls well with you. 

User
Posted 08 Sep 2024 at 13:46

Hi I had both flow and frequency symptoms prior to diagnosis (T2c)N0 M0.  I opted for surgery. My mind was get rid of it.

User
Posted 08 Sep 2024 at 14:10

Flow problems mean that a prostatectomy would have the additional advantage of sorting those out too. Conversely, radiotherapy (particularly brachytherapy) might make flow issues worse during treatment, although that's resolvable with a catheter. However, a prostatectomy with a T3a G9 diagnosis is the highest risk of recurrence needing salvage radiotherapy. If he's T3b,* they won't offer surgery.


If you go for radiotherapy (and hormone therapy), they would usually fix the flow problems first, because fixing them afterwards has a higher risk of damage to urinary continence. However, with a T3 G9 diagnosis, they might not want to wait to do that unless they can fit it in immediately as you start on the hormone therapy.


You don't have the full diagnosis yes, and in particular, it's very significant if it's T3a or T3b * which you haven't said. This means there are pros and cons for both, and not an obvious winner. Make sure you talk with both surgery (prostatectomy) and oncology (radiotherapy), and compare what they both recommend.


I would certainly ask oncology about HDR Boost, which is a combination of external beam radiotherapy and high dose rate brachytherapy, which in my view is a good fit for many T3{a or b} G9 cases, and can even cope with a little bit of N1 (one or two local lymph nodes). It can optionally include radiotherapy to all the pelvic lymph nodes at a low prophylactic dose to kill off any micro-mets (mets too small to show on any scans) which have already got into pelvic lymph nodes which is a significant risk with T3 G9. HDR Boost is only done at the large radiotherapy treatment centres, so you might need referring somewhere else for that treatment. If your centre doesn't do, the oncologists there might not know much about it, but you can ask for a second opinion from a centre which does. If there is more extensive N1, then they would probably treat it all with external beam radiotherapy.


*T3a means broken out of the prostate or significantly bulging the prostate, but not grown as far as other organs. T3b means grown into seminal vesicles.

Edited by member 08 Sep 2024 at 14:23  | Reason: Not specified

User
Posted 08 Sep 2024 at 17:10

Thank you Andy, that’s exactly the summary I was needing. πŸ’•. 


They didn’t say if it was T3a or T3b - I’m assuming they’ll tell us that after the CT scan. They also didn’t tell us anything about the size of the lesion they had found. I’d have liked to know if his PSA has risen too, as it was May that was done, but maybe it’s not normal practice to retest after only 4 months 🀷🏻‍♀️. 


I may come back to you with other questions once I’ve digested all of your info but in the meantime, thank you so much for taking the time to put that together. This forum really is a godsend!!


Jason - thanks for your response. Hope you are recovering well after the op. 

User
Posted 14 Sep 2024 at 20:39
I was T3b with gleason 8 on diagnosis. As has been mentioned as there was spread to seminals no point to surgery so it was RT/HT for me. I had flow problems and oncologist put me forward for TURP (bit of prostate cut away) as RT would make the problem worse. After the TURP gleason went to 9. The TURP procedure was pretty straightforward, two night stay usually in hospital, catheter whilst in hospital, show you can urinate enough with catheter out and home. Leading up to TURP, i self catheterised which was quite staighfoward as well once the, fear I suppose, had been beaten after a couple of times. I also had Tamsulosin prior to TURP which helped. No problem since and the procedure was in 2016.
Peter
User
Posted 14 Sep 2024 at 22:07

Thanks for posting Peter. It’s really encouraging to read that you seem to have been very similar in diagnosis and have done so well with the treatment. I know things will be different 8 years on, and also I’m in Scotland, but how long did you have to wait for the TURP, and did it delay the start of RT by much?? 

User
Posted 15 Sep 2024 at 15:20

Hi Kazzy60,


Bracytherapy Boost was ruled out for me because of my poor flow rate. I didn’t think it was too bad actually but they were concerned that I might need long term catheter. I have a friend who had this treatment, went into retention after it and it caused a lot of problems.

User
Posted 15 Sep 2024 at 17:16

That’s useful to know, thanks Derek. So that would rule out the HDR Boost that Andy62 referred to. You guys are amazing … your input has really helped me to get my head around what the likely options will be. His CT is tomorrow so presumably we’ll know what’s what in about 2 weeks time.  

User
Posted 15 Sep 2024 at 21:03

Kazzy, I’m not medically trained so am just describing my experiences on my journey. Andy62 describes what might happen with HDR Brachytherapy so I guess it’s up to your consultant to decide if it’s worth the risk?


I regarded my optimum treatment(having had surgery being ruled out by the MDT) was HDR Boost, followed by 37 sessions of RT to treat the prostate and the pelvic bed. In the end, both these were ruled out so I ended up with only 20 sessions to treat the Prostate and Seminal Vesicles only. This disappointed me but I take some comfort in the fact that my Oncologist (not allowed to name him on here) thought the risk to my health was too great to attempt it. I just have to live with this and hope it’s done the job…I guess I’m going to find out soon🀞


My Oncologist told me not to ‘overthink’ things and ATM I think you’re just going to have to play the waiting game. I know it’s not easy so just try and distract yourself as best you can.


All the best to both of you,


Derek

User
Posted 15 Sep 2024 at 21:08

Thanks, Derek. You know me … overthinking is definitely my superpower!! 🀦🏻‍♀️. I’ll try to stop, you’re quite right. 


As always, great advice on this forum. πŸ’•

User
Posted 16 Sep 2024 at 18:53

Kazzy, I did reply yesterday but doesnt look like it 'went'. I was diagnosed Oct 2015, went on the HT etc right away. Ended up having abiraterone, enzalutimide, prednisolone added to Zoladex as part of trial. I had the TURP in May 2016. RT started 1 Dec 2016 which is obviously a fair bit longer than normal. I could have had the RT sooner but it was delayed simply by choice as I got married in November. Oncologist quite happy with this as there was no evidence of any threat and the ADT working as it should. When first diagnosed you're in panic mode and want everything now but I accepted the consultants comments saying no rush in my case, Zoladex etc good until we're ready. Admittedly I am on the laid back side of things and fortunate that treatment was doing what it should.


Peter


 

User
Posted 16 Sep 2024 at 20:10

Thanks Peter. That’s reassuring, and I’m delighted you’re doing so well. 😊

 
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