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User
Posted 17 Feb 2022 at 16:28

Advice from those out there please? 

PSA 4.8 in October. DRE nodule found. MRI November showed nodule and probable cancer. December bone scan clear.

Saw Urologist last Friday...Gleason 9 and Grade 5.

Decided on RP rather than radiotherapy to give option of radiotherapy at later date should it be needed. Specialist nurse just been in touch (at last) and said that husband would need open surgery as they would need to remove lymph nodes. Will refer to Urologist surgeon to discuss and this appointment would be 3-4 weeks....surgeon would then decide the urgency and advise when op would take place. Husband asked for an idea of how long the wait would be. She asked if he was on hormone meds. He said yes...he started Bicalutamude(Casodex) on Tuesday and will be on them for 4 weeks with a Zoladex injection in two weeks time. Nurse sounded very offhand saying the hormone therapy will contain the cancer and when husband asked for how long, she said they have people on HT for two years and yes even at Gleason 9. 

We are both, obviously worried sick about time delays bearing in mind this is high grade although apparently localised at the moment. We are seriously thinking of using savings to have this sorted quickly...... Any advise?

 

 

 

User
Posted 17 Feb 2022 at 18:15
I would tend to dismiss the casual answer of the nurse and pay more heed to what the Consultant says at the meeting in 3-4 weeks. (Whilst it is true that HT can contain PCa, at least for a time, it's effectiveness in doing this is very variable in length of time and I don't think somebody with a diagnosis anywhere close to your husbands would not be done within months rather than years). Of course Covid has caused delays in doing Prostatectomies in some hospitals and HT is being used as a holding treatment, whereas hitherto was not usual to give HT to men awaiting Prostatectomy.
Barry
User
Posted 17 Feb 2022 at 18:17

When diagnosed December 2020 my PSA was 24.9 Gleason 9 had 37 sessions of radiotherapy hormone therapy for two years my PSA now 0.01 and generally ok only drawback was a small anal abcess caused by the radiotherapy that surfaced last month and is now receding with the help off antibiotic cream life returning to normal 👍

User
Posted 17 Feb 2022 at 18:36
Bear in mind that the cancer will have been there for years; perhaps even decades. Whether you get it treated now or in a couple of months' time honestly isn't going to affect the outcome to any noticeable extent. The bicalutimide will do a good job of containing the cancer while you await surgery. Consider the fact that, had you opted for RT, you would likely have been on HT for six months before the RT started.

Best wishes,

Chris

User
Posted 17 Feb 2022 at 22:00
No need to use hard earned cash through panic! The HT will be starving the cancer so it isn't going to get any worse while this is sorted out. I have never come across someone having to wait 2 years for a prostatectomy.

Open surgery isn't a massive deal - my husband chose open RP partly for the same reason it is being recommended for your OH (to remove a couple of lymph nodes) and partly because he had had previous abdominal surgery. Plus the outcomes for open RP (in terms of incontinence, erectile function and positive margins) are still very, very slightly better than with robotic / keyhole. It can take longer to recover but if it improves his chance of a good outcome, it will be worth it.

I have to say though that choosing surgery because it means you can still have RT later is flawed thinking; if a treatment fails and salvage treatment is needed, the chance of achieving remission drops dramatically regardless of whether it was surgery followed by RT or RT followed by surgery. Better to choose the treatment least likely to fail.

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

User
Posted 18 Feb 2022 at 19:21

We all make treatment decisions based on what information our Consultants provide (which is not always definitive) plus whatever we glean elsewhere and our assessment of options that are open to us. We differ in what we decide for various reasons. Looking at what might be a good follow up treatment if the primary treatment fails, (as it it does in quite a number of cases), I feel this is a valid part of this assessment as well as other factors. We know that few surgeons will do a Prostatectomy after RT and those that have it are almost certain to have far more severe after effects, particularly in respect of incontinence. However, for those that have Prostatectomy first, in the event that this is not successful, side effects will be variably slightly worse if HT/RT follows than being administered initially, but the chances of eradicating or setting back the cancer are improved in many cases. So I take a slightly different view to Lyn on this one. Her husband is doing well on RT after RP and many of us know men who have benefited in the same way.  So for some this an important if not overriding consideration.

A high proportion of men have to make a choice from options for which they are suitable and for some the decision is more easy to make if they are strongly opposed to certain forms of treatment. However, for many of us, coming to a treatment decision is difficult, even after looking at the pros and cons.

Edited by member 18 Feb 2022 at 20:40  | Reason: Not specified

Barry
User
Posted 18 Feb 2022 at 21:23
Paulit, my sympathies, the initial diagnosis feels like you are in a process where everyone else (at least, the medical professionals) seems to know what is going on but you are still trying to work it out. Could be the basis for a Kafka novel!

The way I see it, PSA 4.8 is at the low end but Gleason 9 is high. If the professionals tell you the different treatments are likely to work similarly in your case they will have looked up the probabilities based on your situation - but don't take it on trust that you are average, Check all the excellent information provided by Prostate Cancer UK (downloadable from this website).

It makes sense that you have been put quickly on hormone therapy, and that is likely to slow down the tumour growth so that you don't have to worry about a few weeks to the next step. But I do know from current personal experience that you still want to feel things are heading towards a solution!

If you really worry about spread to the lymph nodes, that won't be solved by prostatectomy alone and you may still end up worrying whether the "right" lymph nodes have been removed. In that case radiotherapy might be the better bet. What I am saying is the best decision might be about the psychology rather than the cancer.

(To give context, I am currently in a similar "process" of dealing with a PSA recurrence following previous prostate surgery. The knowledge that being put on hormone therapy has already reduced my PSA massively means I am a lot less stressed about the time it is taking to get salvage radiotherapy).

User
Posted 19 Feb 2022 at 08:06
You should ask to speak to an oncologist to discuss the non-surgical options available to you. Urologists do surgery, so they can't discuss radiotherapy with you.

Best wishes,

Chris

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User
Posted 17 Feb 2022 at 18:15
I would tend to dismiss the casual answer of the nurse and pay more heed to what the Consultant says at the meeting in 3-4 weeks. (Whilst it is true that HT can contain PCa, at least for a time, it's effectiveness in doing this is very variable in length of time and I don't think somebody with a diagnosis anywhere close to your husbands would not be done within months rather than years). Of course Covid has caused delays in doing Prostatectomies in some hospitals and HT is being used as a holding treatment, whereas hitherto was not usual to give HT to men awaiting Prostatectomy.
Barry
User
Posted 17 Feb 2022 at 18:17

When diagnosed December 2020 my PSA was 24.9 Gleason 9 had 37 sessions of radiotherapy hormone therapy for two years my PSA now 0.01 and generally ok only drawback was a small anal abcess caused by the radiotherapy that surfaced last month and is now receding with the help off antibiotic cream life returning to normal 👍

User
Posted 17 Feb 2022 at 18:36
Bear in mind that the cancer will have been there for years; perhaps even decades. Whether you get it treated now or in a couple of months' time honestly isn't going to affect the outcome to any noticeable extent. The bicalutimide will do a good job of containing the cancer while you await surgery. Consider the fact that, had you opted for RT, you would likely have been on HT for six months before the RT started.

Best wishes,

Chris

User
Posted 17 Feb 2022 at 22:00
No need to use hard earned cash through panic! The HT will be starving the cancer so it isn't going to get any worse while this is sorted out. I have never come across someone having to wait 2 years for a prostatectomy.

Open surgery isn't a massive deal - my husband chose open RP partly for the same reason it is being recommended for your OH (to remove a couple of lymph nodes) and partly because he had had previous abdominal surgery. Plus the outcomes for open RP (in terms of incontinence, erectile function and positive margins) are still very, very slightly better than with robotic / keyhole. It can take longer to recover but if it improves his chance of a good outcome, it will be worth it.

I have to say though that choosing surgery because it means you can still have RT later is flawed thinking; if a treatment fails and salvage treatment is needed, the chance of achieving remission drops dramatically regardless of whether it was surgery followed by RT or RT followed by surgery. Better to choose the treatment least likely to fail.

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

User
Posted 18 Feb 2022 at 16:59

To be honest, we both feel totally in the dark. The urologist who gave us the results of the biopsy at Gleason 9 and Grade 5 then handed us two leaflets...one detailing radiotherapy and the other Radical Prostatectomy. We were then told to have a think over the weekend and ring the nurse co ordinator on Monday to tell her our decision. We will not be speaking to an oncologist as RP is apparently a urology procedure. After leaving messages for the nurse to call us on Monday and receiving her call back on Thursday,she asked why we had decided on RP. When husband said that radiotherapy could then be used at a later date if needed,she said ok. No one has discussed which option would be best and we have just had to decide based on whatever side effects/risks etc,we have read up on. One minute I feel quite calm about him starting on HT and waiting and then I  read that there can be undetected spread in lymph nodes. Then panic sets in

User
Posted 18 Feb 2022 at 19:21

We all make treatment decisions based on what information our Consultants provide (which is not always definitive) plus whatever we glean elsewhere and our assessment of options that are open to us. We differ in what we decide for various reasons. Looking at what might be a good follow up treatment if the primary treatment fails, (as it it does in quite a number of cases), I feel this is a valid part of this assessment as well as other factors. We know that few surgeons will do a Prostatectomy after RT and those that have it are almost certain to have far more severe after effects, particularly in respect of incontinence. However, for those that have Prostatectomy first, in the event that this is not successful, side effects will be variably slightly worse if HT/RT follows than being administered initially, but the chances of eradicating or setting back the cancer are improved in many cases. So I take a slightly different view to Lyn on this one. Her husband is doing well on RT after RP and many of us know men who have benefited in the same way.  So for some this an important if not overriding consideration.

A high proportion of men have to make a choice from options for which they are suitable and for some the decision is more easy to make if they are strongly opposed to certain forms of treatment. However, for many of us, coming to a treatment decision is difficult, even after looking at the pros and cons.

Edited by member 18 Feb 2022 at 20:40  | Reason: Not specified

Barry
User
Posted 18 Feb 2022 at 21:23
Paulit, my sympathies, the initial diagnosis feels like you are in a process where everyone else (at least, the medical professionals) seems to know what is going on but you are still trying to work it out. Could be the basis for a Kafka novel!

The way I see it, PSA 4.8 is at the low end but Gleason 9 is high. If the professionals tell you the different treatments are likely to work similarly in your case they will have looked up the probabilities based on your situation - but don't take it on trust that you are average, Check all the excellent information provided by Prostate Cancer UK (downloadable from this website).

It makes sense that you have been put quickly on hormone therapy, and that is likely to slow down the tumour growth so that you don't have to worry about a few weeks to the next step. But I do know from current personal experience that you still want to feel things are heading towards a solution!

If you really worry about spread to the lymph nodes, that won't be solved by prostatectomy alone and you may still end up worrying whether the "right" lymph nodes have been removed. In that case radiotherapy might be the better bet. What I am saying is the best decision might be about the psychology rather than the cancer.

(To give context, I am currently in a similar "process" of dealing with a PSA recurrence following previous prostate surgery. The knowledge that being put on hormone therapy has already reduced my PSA massively means I am a lot less stressed about the time it is taking to get salvage radiotherapy).

User
Posted 19 Feb 2022 at 08:06
You should ask to speak to an oncologist to discuss the non-surgical options available to you. Urologists do surgery, so they can't discuss radiotherapy with you.

Best wishes,

Chris

 
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