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Which treatment? Help!

User
Posted 04 Jul 2022 at 12:09

Hi Gang,

After my diagnosis, I am now looking into what would be the best treatment for me. So I was diagnosed a month ago with 4+4, T3a. Not in my bones or Lymph nodes. I’m 54 and in good health.

I’ve been offered both Hormone Therapy + Radio Therapy or a Prostatectomy and I’m really having issues deciding the best route.

I saw a Surgeon today who believed the best route forward was to take out the prostate (btw, he said it would be aggressive surgery too).

In the letter from the Hospital with my diagnosis, it said they thought Radiotherapy would be the better option as I am a larger guy (17 ½ stone). I’ve also been thinking my quality of life would be better as If I had the Prostatectomy the side effects up front would be much worse. I work full time and the potential incontinence would be an issue. They can get me in for an operation within the next 8 weeks.

My Cancer Nurse thought it would be a good idea to see an Oncologist to talk about the Radiotherapy option so I could get a balanced view – the Surgeon clearly thought Surgery was the only way, but I’m not so sure.

Thoughts please – these are massive decisions!

Cheers.

Jon

User
Posted 04 Jul 2022 at 21:48

Originally Posted by: Online Community Member

As you are T3 you are classified as advanced PC with the tumours having broken out of the prostate.

My take on it is that a prostectomy is a bit like shutting the stable door after the horses have escaped.

My husband was originally diagnosed T3a but only advanced cancer as they said it had spread to the bones. When they said the bone was benign and he just had it in the lymph node he was downgraded to locally advanced. I think with just T3a it is just pushing against the edge and not necessarily escaped so would still be classed as local PCa.

My OH had RALP last December. Continence wise he has been great but ED still a problem for him but we’re dealing with it ok. He was downgraded after the op to T2 (which we would never have known) his Gleason score was increased from 4+3 to 4+5. It’s very possible he may need RT in the future but we’re happy with the decision we made. 
It’s not an easy decision and it’s so difficult to know if you’re making the right ones but, really important to do what you are doing and speak with everyone properly and then you can make a more informed and personalised decision. Hopefully you will feel more confident in your decision then.

Best of luck 

User
Posted 04 Jul 2022 at 22:13

Originally Posted by: Online Community Member
As you are T3 you are classified as advanced PC with the tumours having broken out of the prostate.

No, T3 doesn't imply advanced prostate cancer (and neither does T4 by itself), although they both mean at least locally advanced.

Advanced prostate cancer is a staging with M1 (metastasis away from the prostate) as opposed to M0 (no metastasis).

User
Posted 04 Jul 2022 at 13:23
A bit of clarity may be needed. When they say the RP would be aggressive surgery, do they mean that nerve-sparing is not possible? If that's the case, you will have almost certain ED and possibly a higher risk of incontinence. My instinct is that if the hospital MDT recommended RT / HT, they had good reason.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Jul 2022 at 14:17

I agree with Lyn - if the MDT (which is the collective view of the hospital oncologists, radiographers, urologists, etc) recommended radiotherapy, why is a surgeon disagreeing with them? If sexual function is important to you, you need to ask about the prospect of nerve sparing. Even with full nerve sparing, this might not recover. Also ask him what effect the aggressive surgery would likely have on continence. I'm not trying to put you off prostatectomy, but I would want to understand why the surgeon is perhaps not towing the line from the MDT. You could also try asking what he thinks your chances are of needing radiotherapy after the prostatectomy. This is required in 30% of all prostatectomies anyway, but your risk may be higher.

My diagnosis wasn't that different to yours (although you haven't said what your PSA was at diagnosis). I went for a radiotherapy protocol called HDR Boost, which is good for high risk patients with no known spread to lymph nodes, but being high risk, there's a chance of micro-mets (mets still too small to show on scans). This consists of external beam radiotherapy to prostate, prostate bed, seminal vesicles and optionally pelvic lymph nodes done too (I had them included). This is done at a lower than full dose which tends to produce fewer side effects, but the prostate where the known cancer is is topped up using HDR Brachytherapy to a higher dose than can be achieved with external beam radiotherapy alone. This is thought to be a good compromise on hitting the cancer hard, cleaning up where it might have spread unseen, and relatively low side effects considering how hard the cancer is being hit.

If I'd had a prostatectomy, it was unlikely I'd have any nerve sparing, and quite likely (well above 30%) that I'd need radiotherapy. So the urologists, who would have done a prostatectomy if I really wanted it, said why not go for radiotherapy in the first place and avoid having both sets of side effects. Radiotherapy can also impact sexual function, but the chances are less, particularly if prostatectomy wouldn't be full nerve sparing.

A negative point for radiotherapy is your age, and to a slightly lesser extent, that was the case for me too, at 2-3 years older than you at diagnosis and treatment. I may live long enough (with luck) for a risk of cancer in the bowel or bladder to double (typically 20 years later), but we're still talking about a small risk. Some 3 years after my radiotherapy, I'm still pleased with my choice, and everything still works, but there are of course no guarantees - it's mostly just risk levels and luck.

Edited by member 04 Jul 2022 at 14:25  | Reason: Not specified

User
Posted 04 Jul 2022 at 15:33
One thing to consider is that with a T3 diagnosis there will be a very significant probability of requiring follow-up radiotherapy after surgery, so you'd end up with both sets of side-effects. Personally I'd go for the HT/RT option.

Chris

User
Posted 04 Jul 2022 at 20:51
It’s a difficult one and definitely meet the oncologist and discuss the ht/rt route as you have done with the surgeon so you can have a balanced view. As Lynn says be guided by the MDT, they will give you stats and percentages etc. In my husbands case, each treatment had the same outcome, both curative. He opted for surgery after weighing up the pros and cons. He is 15 weeks post op tomorrow. He may need radiotherapy down the line, who knows but he is happy currently knowing the cancer has been removed with clear margins. If you do decide to have surgery you can have rt afterwards if required, whereas if you decide on rt/ht it is difficult to then have surgery afterwards. It’s not impossible but from what we told it is not advisable. Best of luck with your decision x
User
Posted 04 Jul 2022 at 21:04

As you are T3 you are classified as advanced PC with the tumours having broken out of the prostate.

My take on it is that a prostectomy is a bit like shutting the stable door after the horses have escaped.

User
Posted 04 Jul 2022 at 23:34

You are right Jon, being expected to make a decision like this with little knowledge, and effectively a gun to your head is not easy. I can't see prostatectomy being a good idea with a t3a aggressive surgery sounds like it will be bad side effects. See what the oncologist says.

Dave

User
Posted 07 Jul 2022 at 12:09

Hi All, 

So I've now heard from Urology that it's going to be a month before I can see the Radiotherapy Oncologist at Western Park. 

All this waiting is literally killing me!

I'm down for RP in about 6 weeks. 

In my own mind I'm thinking do I just say yes to Radiotherapy and start my HT now or wait until the additional 4 weeks while my Cancer is growing. 

I suppose its down to the state of the NHS.

It's really difficult to know what to do. 

User
Posted 07 Jul 2022 at 12:39

prostate cancer is very slow growing a few weeks won't make any difference iwent the radiotherapy route with hormone therapy psa now 0.01 from 25.9  and doing ok working all the way through treatment  👍

Edited by member 07 Jul 2022 at 12:39  | Reason: Not specified

User
Posted 07 Jul 2022 at 13:15

Jon,

As Gaz says it is generally very slow growing so shouldn’t make too much difference.

If you are feeling really anxious….Rob had bicalutamide for 4 weeks and 2 prostap 3 injections before his operation, so even if you wanted to start HT in the meantime it wouldn’t mean that you definitely have to take the RT route….could be an option?

Of course Rob was originally diagnosed advanced hence why he was put straight on to HT. His post op histology changed from T3a to T2 (not sure if HT had anything to do with this). I would say the downside to having the HT first is that we can’t be sure at the moment how successful the RALP was….his PSA is undetectable <0.025 but is that because all the cancer has gone or HT…it’s a waiting game now he has stopped HT. 

User
Posted 07 Jul 2022 at 19:39
The cancer will have been there for years, if not decades. A few weeks isn't going to make any difference to the outcome.

Cheers,

Chris

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User
Posted 04 Jul 2022 at 13:23
A bit of clarity may be needed. When they say the RP would be aggressive surgery, do they mean that nerve-sparing is not possible? If that's the case, you will have almost certain ED and possibly a higher risk of incontinence. My instinct is that if the hospital MDT recommended RT / HT, they had good reason.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Jul 2022 at 14:17

I agree with Lyn - if the MDT (which is the collective view of the hospital oncologists, radiographers, urologists, etc) recommended radiotherapy, why is a surgeon disagreeing with them? If sexual function is important to you, you need to ask about the prospect of nerve sparing. Even with full nerve sparing, this might not recover. Also ask him what effect the aggressive surgery would likely have on continence. I'm not trying to put you off prostatectomy, but I would want to understand why the surgeon is perhaps not towing the line from the MDT. You could also try asking what he thinks your chances are of needing radiotherapy after the prostatectomy. This is required in 30% of all prostatectomies anyway, but your risk may be higher.

My diagnosis wasn't that different to yours (although you haven't said what your PSA was at diagnosis). I went for a radiotherapy protocol called HDR Boost, which is good for high risk patients with no known spread to lymph nodes, but being high risk, there's a chance of micro-mets (mets still too small to show on scans). This consists of external beam radiotherapy to prostate, prostate bed, seminal vesicles and optionally pelvic lymph nodes done too (I had them included). This is done at a lower than full dose which tends to produce fewer side effects, but the prostate where the known cancer is is topped up using HDR Brachytherapy to a higher dose than can be achieved with external beam radiotherapy alone. This is thought to be a good compromise on hitting the cancer hard, cleaning up where it might have spread unseen, and relatively low side effects considering how hard the cancer is being hit.

If I'd had a prostatectomy, it was unlikely I'd have any nerve sparing, and quite likely (well above 30%) that I'd need radiotherapy. So the urologists, who would have done a prostatectomy if I really wanted it, said why not go for radiotherapy in the first place and avoid having both sets of side effects. Radiotherapy can also impact sexual function, but the chances are less, particularly if prostatectomy wouldn't be full nerve sparing.

A negative point for radiotherapy is your age, and to a slightly lesser extent, that was the case for me too, at 2-3 years older than you at diagnosis and treatment. I may live long enough (with luck) for a risk of cancer in the bowel or bladder to double (typically 20 years later), but we're still talking about a small risk. Some 3 years after my radiotherapy, I'm still pleased with my choice, and everything still works, but there are of course no guarantees - it's mostly just risk levels and luck.

Edited by member 04 Jul 2022 at 14:25  | Reason: Not specified

User
Posted 04 Jul 2022 at 15:33
One thing to consider is that with a T3 diagnosis there will be a very significant probability of requiring follow-up radiotherapy after surgery, so you'd end up with both sets of side-effects. Personally I'd go for the HT/RT option.

Chris

User
Posted 04 Jul 2022 at 20:20
Thanks to all your replys so far. Its a really difficult decision to make as to me you are weighing up Quality of life against length of life. I also find it bizarre that you have to decide what's best for you... Even though the medical professionals have spent many years studying the various aspects of anatomy they expect someone with very little knowledge or experience to make probably one the most important decisions in their life. The more I learn the harder its getting 🤔
User
Posted 04 Jul 2022 at 20:51
It’s a difficult one and definitely meet the oncologist and discuss the ht/rt route as you have done with the surgeon so you can have a balanced view. As Lynn says be guided by the MDT, they will give you stats and percentages etc. In my husbands case, each treatment had the same outcome, both curative. He opted for surgery after weighing up the pros and cons. He is 15 weeks post op tomorrow. He may need radiotherapy down the line, who knows but he is happy currently knowing the cancer has been removed with clear margins. If you do decide to have surgery you can have rt afterwards if required, whereas if you decide on rt/ht it is difficult to then have surgery afterwards. It’s not impossible but from what we told it is not advisable. Best of luck with your decision x
User
Posted 04 Jul 2022 at 21:04

As you are T3 you are classified as advanced PC with the tumours having broken out of the prostate.

My take on it is that a prostectomy is a bit like shutting the stable door after the horses have escaped.

User
Posted 04 Jul 2022 at 21:48

Originally Posted by: Online Community Member

As you are T3 you are classified as advanced PC with the tumours having broken out of the prostate.

My take on it is that a prostectomy is a bit like shutting the stable door after the horses have escaped.

My husband was originally diagnosed T3a but only advanced cancer as they said it had spread to the bones. When they said the bone was benign and he just had it in the lymph node he was downgraded to locally advanced. I think with just T3a it is just pushing against the edge and not necessarily escaped so would still be classed as local PCa.

My OH had RALP last December. Continence wise he has been great but ED still a problem for him but we’re dealing with it ok. He was downgraded after the op to T2 (which we would never have known) his Gleason score was increased from 4+3 to 4+5. It’s very possible he may need RT in the future but we’re happy with the decision we made. 
It’s not an easy decision and it’s so difficult to know if you’re making the right ones but, really important to do what you are doing and speak with everyone properly and then you can make a more informed and personalised decision. Hopefully you will feel more confident in your decision then.

Best of luck 

User
Posted 04 Jul 2022 at 22:13

Originally Posted by: Online Community Member
As you are T3 you are classified as advanced PC with the tumours having broken out of the prostate.

No, T3 doesn't imply advanced prostate cancer (and neither does T4 by itself), although they both mean at least locally advanced.

Advanced prostate cancer is a staging with M1 (metastasis away from the prostate) as opposed to M0 (no metastasis).

User
Posted 04 Jul 2022 at 23:34

You are right Jon, being expected to make a decision like this with little knowledge, and effectively a gun to your head is not easy. I can't see prostatectomy being a good idea with a t3a aggressive surgery sounds like it will be bad side effects. See what the oncologist says.

Dave

User
Posted 07 Jul 2022 at 12:09

Hi All, 

So I've now heard from Urology that it's going to be a month before I can see the Radiotherapy Oncologist at Western Park. 

All this waiting is literally killing me!

I'm down for RP in about 6 weeks. 

In my own mind I'm thinking do I just say yes to Radiotherapy and start my HT now or wait until the additional 4 weeks while my Cancer is growing. 

I suppose its down to the state of the NHS.

It's really difficult to know what to do. 

User
Posted 07 Jul 2022 at 12:39

prostate cancer is very slow growing a few weeks won't make any difference iwent the radiotherapy route with hormone therapy psa now 0.01 from 25.9  and doing ok working all the way through treatment  👍

Edited by member 07 Jul 2022 at 12:39  | Reason: Not specified

User
Posted 07 Jul 2022 at 13:15

Jon,

As Gaz says it is generally very slow growing so shouldn’t make too much difference.

If you are feeling really anxious….Rob had bicalutamide for 4 weeks and 2 prostap 3 injections before his operation, so even if you wanted to start HT in the meantime it wouldn’t mean that you definitely have to take the RT route….could be an option?

Of course Rob was originally diagnosed advanced hence why he was put straight on to HT. His post op histology changed from T3a to T2 (not sure if HT had anything to do with this). I would say the downside to having the HT first is that we can’t be sure at the moment how successful the RALP was….his PSA is undetectable <0.025 but is that because all the cancer has gone or HT…it’s a waiting game now he has stopped HT. 

User
Posted 07 Jul 2022 at 19:39
The cancer will have been there for years, if not decades. A few weeks isn't going to make any difference to the outcome.

Cheers,

Chris

 
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