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Decision RP vs HRT/ EBRT Sense Check

User
Posted 09 Jan 2020 at 09:55

Advice please re my thought process. Aged 67, retired and pretty fit and have been recently diagnosed: Psa 11, Gleason 4:3, T3a with bone scan, lymph nodes all clear. (more details on Profile). Hence, I’m intermediate/high risk. I have studied the threads on this excellent board and after having meetings with surgeon and oncologist have put together following summary that I’d welcome sense checks/ comments as to any incorrect assumptions etc.

RP. Has been offered as an option using Da Vinci. 80% of men stay in for 1 night. Left side nerves bundle would be removed together with local lymph nodes on that side. Surgeon has completed at least 300 operations in 5 years and quotes 50% of men on 1 pad after 6 weeks and 85% ok after 1 year. (Seems to equate to national figs). Seems ok but means 1 in 6 chance of urinary issues after 1 year…which is a major issue to me. At least 50% chance of losing erections due to nerve loss. I feel pretty squeamish re. operation but accept keyhole surgery is less invasive.

HRT/ EBRT. Has been offered. EBRT for ~ 4weeks. This includes brachytherapy options of LDR/ HDR. LDR using permanent seeds, and HDR being a recent initiative in hospital in which the specialist has considerable experience. Brachy requires a GA, but less invasive than RP. Various side effects from the combined approach as expected (hot flushes, increased urinary frequency/urgency etc) but hopefully just short term. No semen after radiation. Less than 5% of men have long term issues?

He can’t do brachy on its own due to T3 rating. Apparently Space Oar gel not available nor possible as would affect brachy technique.

He feels HDR is the better RT option as less acute side effects as lower radiation to surrounding area. In this case this would be total of a year of HRT with EBRT/ Brachy timing somewhere in the middle. I live near the hospital so regular trips not a major issue.

Way Forward?

I understand that the success rates for the two options are equivalent for my particular profile. i.e. 80% chance of not having recurrence after 5 years. Oncologist says brachy lifts EBRT % by 10% compared to EBRT alone, making equivalent to RP. Neither specialist would come off the fence re. recommended choice. It’s all down to me…which has been extremely challenging but forcing me to think through all of the issues involved.

As of now I’m leaning towards the HRT/ EBRT -HDR route. My feeling is that as I’m T3a, if I have the prostate removal via surgery, then I may still need HRT/ EBRT anyway so why go through all the bother? (to quote an excellent statement by a main poster, Lyn). Also believe that I am less likely to have long-term urinary issues.  Am I missing anything...?

Thanks in advance

User
Posted 10 Jan 2020 at 05:37
I was T3a after the post-op biopsy, and have had undetectable PSA in the seventeen months since the operation. I was virtually continent from the day the catheter was removed. Erections sadly are a thing of the past.

My surgeon does 3-4 hundred prostatectomies per year, and has done over 3000 in total. He said he would not send a friend or relative to any surgeon who does less than 100 ops a year.

Best of luck.

Cheers, John.

User
Posted 09 Jan 2020 at 14:48

Hi Vince,

It is difficult to make a choice and i think i was in the same position back in September 2016.I was offered Robotic surgery from the first consultant and he thought his was the best option in my local hospital the Lister in Stevenage Herts and he seemed surprised when i asked to speak to the Brachytherapy specialist that was in the hospital at the same time.

My PSA at that time was 2.19 with Gleason 3+4=7 5 out of 12 cores positive T2 NO MO.

If i had not have had the knowledge of Brachytherapy from a friend that had the same treatment i may have gone for the first option but for your own peace of mind you must read as much about all the options before you decide.

I got a lot of information from this site and helpful members that have had the treatments and the different side affects but right up to the operation i was still no sure that i was making the right decision.

But three years on after Brachytherapy at Mount Vernon in London i am doing very well with PSA @ 0.18 and year blood tests.Click on my Avatar to see my journey so far and good luck for the future.

John.

Edited by member 09 Jan 2020 at 14:51  | Reason: Not specified

User
Posted 09 Jan 2020 at 15:34
I can't think of anything you have missed. Choosing is never easy when neither choice is a clear winner so all you can do is your best. If you have been reading for a while you have probably seen this before (sorry) but the sensible decision making checklist seems to be

- which radical treatment gives me the best chance of full remission?

- can I tolerate the potential risks of that treatment?

- if not, which is the next best treatment option with risks I think I can live with?

On that basis, we would definitely have gone with brachy but it wasn't offered :-/

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

User
Posted 09 Jan 2020 at 17:52

Yes you've thought it through and covered everything. I had HT, HDR, EBRT.

I was T3 so onco said if I had RP then EBRT would probably be necessary as well. Any way there was no further talk of RP after that meeting so I just went with whatever they suggested. 

HDR and EBRT were completely trouble free. HT is sort of OK, I was fine for first year. I've been on it 20 months so far, only now am I beginning to get hot sweats, about three a day they last about five minutes each, it's bearable. I'm getting a bit pissed of at the lack of sex. I'll be off HT in a couple of months then it will probably take a year to get back to normal, I'm looking forward to that. 

If you're only on HT for a year you'll probably be OK with it. Some people get hot sweats and find it unbearable from month one. In which case you could probably review your options. 

One tiny advantage of RP is that if PSA rises post op, you know the cancer is still there and more treatment is required. With RT your psa will bounce around at a low level for years, and you won't be too sure if you still have a problem. For me the side effects don't justify that small benefit. 

 

Dave

User
Posted 10 Jan 2020 at 11:15

Hi

i had the same surgeon as bollinge. Had a Retzius sparing RARP + Neurosafe privately at London Bridge end of November. No real pain on the journey apart from discomfort of urethral catheter for 15 days.

Just over week six now and am dry albeit the odd drip plus using a pad lvl2 for reassurance but will try without next week. Erections are now strong and pretty much what they were pre-op. Penis size flaccid is marginally shorter and erect can’t see any change from pre-op. Quite fortunate as one of my nerve bundles were partially removed to be cautious but turned out all margins clear. 

As John says definitely look for a surgeon with high volumes and good stats.

Good luck with whatever you decide and keep us posted with your progress.

 

 

Edited by member 10 Jan 2020 at 11:18  | Reason: Not specified

User
Posted 10 Jan 2020 at 18:49

For most in this situation going the HT/RT will give as good a result as surgery. Unfortunately, for a few cancer can come back in a previously radiated Prostate. This is my situation now. At the time the Surgeon representing the view of the MDT told me that with my T3A he would operate if I wished but was doubtful he could remove all the cancer and suggested I had EBRT instead, which I had done. Unfortunately, a tumour regrew in my Prostate and I had this treated by HIFU but now there is another small tumour close to the rectum which apparently can't be treated specifically by any treatment available in the UK other than systemically. Knowing what I know now, I wish I had chanced the extra side effect risk and had a Prostatectomy and Radiation which might have meant the end of PCa for me. But I couldn't know this at the time when I opted for just RT. Hindsight is a great thing!

Edited by member 26 Jan 2020 at 22:46  | Reason: Not specified

Barry
User
Posted 26 Jan 2020 at 16:05

I found the decision a very difficult one to make, but found your input all very useful. I also met with a couple of buddy groups in central Scotland, one of which we really useful in having 30 mins with a prostate specialist nurse at a different hospital. (it was very much a second opinion). As such the input confirmed my initial gut feeling to go for HRT/ EBRT/ Brachy for reasons stated previously.

Treatment involves 3 weeks of Bicalutamide (50 mgs) and then 4*3 monthly injections of Prostap. EBRT after 5 or 6 months, with brachy a few weeks afterwards.

Relieved at least I've made the decision and moving forward.

Will keep you posted.

Vince

 

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User
Posted 09 Jan 2020 at 14:48

Hi Vince,

It is difficult to make a choice and i think i was in the same position back in September 2016.I was offered Robotic surgery from the first consultant and he thought his was the best option in my local hospital the Lister in Stevenage Herts and he seemed surprised when i asked to speak to the Brachytherapy specialist that was in the hospital at the same time.

My PSA at that time was 2.19 with Gleason 3+4=7 5 out of 12 cores positive T2 NO MO.

If i had not have had the knowledge of Brachytherapy from a friend that had the same treatment i may have gone for the first option but for your own peace of mind you must read as much about all the options before you decide.

I got a lot of information from this site and helpful members that have had the treatments and the different side affects but right up to the operation i was still no sure that i was making the right decision.

But three years on after Brachytherapy at Mount Vernon in London i am doing very well with PSA @ 0.18 and year blood tests.Click on my Avatar to see my journey so far and good luck for the future.

John.

Edited by member 09 Jan 2020 at 14:51  | Reason: Not specified

User
Posted 09 Jan 2020 at 15:34
I can't think of anything you have missed. Choosing is never easy when neither choice is a clear winner so all you can do is your best. If you have been reading for a while you have probably seen this before (sorry) but the sensible decision making checklist seems to be

- which radical treatment gives me the best chance of full remission?

- can I tolerate the potential risks of that treatment?

- if not, which is the next best treatment option with risks I think I can live with?

On that basis, we would definitely have gone with brachy but it wasn't offered :-/

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

User
Posted 09 Jan 2020 at 17:52

Yes you've thought it through and covered everything. I had HT, HDR, EBRT.

I was T3 so onco said if I had RP then EBRT would probably be necessary as well. Any way there was no further talk of RP after that meeting so I just went with whatever they suggested. 

HDR and EBRT were completely trouble free. HT is sort of OK, I was fine for first year. I've been on it 20 months so far, only now am I beginning to get hot sweats, about three a day they last about five minutes each, it's bearable. I'm getting a bit pissed of at the lack of sex. I'll be off HT in a couple of months then it will probably take a year to get back to normal, I'm looking forward to that. 

If you're only on HT for a year you'll probably be OK with it. Some people get hot sweats and find it unbearable from month one. In which case you could probably review your options. 

One tiny advantage of RP is that if PSA rises post op, you know the cancer is still there and more treatment is required. With RT your psa will bounce around at a low level for years, and you won't be too sure if you still have a problem. For me the side effects don't justify that small benefit. 

 

Dave

User
Posted 10 Jan 2020 at 05:37
I was T3a after the post-op biopsy, and have had undetectable PSA in the seventeen months since the operation. I was virtually continent from the day the catheter was removed. Erections sadly are a thing of the past.

My surgeon does 3-4 hundred prostatectomies per year, and has done over 3000 in total. He said he would not send a friend or relative to any surgeon who does less than 100 ops a year.

Best of luck.

Cheers, John.

User
Posted 10 Jan 2020 at 11:15

Hi

i had the same surgeon as bollinge. Had a Retzius sparing RARP + Neurosafe privately at London Bridge end of November. No real pain on the journey apart from discomfort of urethral catheter for 15 days.

Just over week six now and am dry albeit the odd drip plus using a pad lvl2 for reassurance but will try without next week. Erections are now strong and pretty much what they were pre-op. Penis size flaccid is marginally shorter and erect can’t see any change from pre-op. Quite fortunate as one of my nerve bundles were partially removed to be cautious but turned out all margins clear. 

As John says definitely look for a surgeon with high volumes and good stats.

Good luck with whatever you decide and keep us posted with your progress.

 

 

Edited by member 10 Jan 2020 at 11:18  | Reason: Not specified

User
Posted 10 Jan 2020 at 18:49

For most in this situation going the HT/RT will give as good a result as surgery. Unfortunately, for a few cancer can come back in a previously radiated Prostate. This is my situation now. At the time the Surgeon representing the view of the MDT told me that with my T3A he would operate if I wished but was doubtful he could remove all the cancer and suggested I had EBRT instead, which I had done. Unfortunately, a tumour regrew in my Prostate and I had this treated by HIFU but now there is another small tumour close to the rectum which apparently can't be treated specifically by any treatment available in the UK other than systemically. Knowing what I know now, I wish I had chanced the extra side effect risk and had a Prostatectomy and Radiation which might have meant the end of PCa for me. But I couldn't know this at the time when I opted for just RT. Hindsight is a great thing!

Edited by member 26 Jan 2020 at 22:46  | Reason: Not specified

Barry
User
Posted 26 Jan 2020 at 16:05

I found the decision a very difficult one to make, but found your input all very useful. I also met with a couple of buddy groups in central Scotland, one of which we really useful in having 30 mins with a prostate specialist nurse at a different hospital. (it was very much a second opinion). As such the input confirmed my initial gut feeling to go for HRT/ EBRT/ Brachy for reasons stated previously.

Treatment involves 3 weeks of Bicalutamide (50 mgs) and then 4*3 monthly injections of Prostap. EBRT after 5 or 6 months, with brachy a few weeks afterwards.

Relieved at least I've made the decision and moving forward.

Will keep you posted.

Vince

 

 
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