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How to decide on treatment

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User
Posted 29 May 2022 at 22:37

I have recently been diagnosed with prostate cancer, T2a NO MO, had an MRI and biopsy, the biopsy results were 21 samples taken between 4 and 14mm in length.  The results were that pattern 4 was found in 30% of 1mm of one sample. I was therefore Gleason 3+4 but with such a low level of pattern 4 active surveillance seems an option. I asked the oncologist about HIFU but they were quite dismissive of this as an option but seems like a good option to me based on the biopsy results, alternative seems to be AS and then brachytherapy as surgery seems to  carry the highest risk. Struggling to decide what to do and very strange that normally medical professionals tell you what is best but for this it seems you have to choose.

User
Posted 29 May 2022 at 22:37

I have recently been diagnosed with prostate cancer, T2a NO MO, had an MRI and biopsy, the biopsy results were 21 samples taken between 4 and 14mm in length.  The results were that pattern 4 was found in 30% of 1mm of one sample. I was therefore Gleason 3+4 but with such a low level of pattern 4 active surveillance seems an option. I asked the oncologist about HIFU but they were quite dismissive of this as an option but seems like a good option to me based on the biopsy results, alternative seems to be AS and then brachytherapy as surgery seems to  carry the highest risk. Struggling to decide what to do and very strange that normally medical professionals tell you what is best but for this it seems you have to choose.

User
Posted 30 May 2022 at 11:56

Hello Jim,


It's called "shared decision making", which means they are supposed to give you the information you need to make the decision. That might (I would argue, should) include listening to you to understand what your priorities, fears, etc are, and talking around how each treatment would impact those. However, I'm only too well aware that many men feel the shared decision making wasn't very shared.


At your young age, one concern I would have is that you are looking for a long time in remission. That might mean having to have more than one treatment during your life, so you might not want to start with one which is difficult to followup if the cancer comes back. That means I would consider leaving radiotherapy as an option you might take later rather than now. That's not a suggestion I often make, except in younger patients who are more likely to need a second treatment later in life. As a T2a G3+4, you might also be eligible for a focal therapy, but that's something they won't suggest unless they offer that treatment - you would need referring to a centre which does to get an opinion on it.


Then there are things like how important is sexual function to you, and for each of the treatments, how likely are they going to be preserving it. For prostatectomy, being T2a, I guess you will have at least one side nerves spared, but the other side will depend on the location of the tumor. However, even with both sets of nerves spared, erectile function isn't always preserved and is usually impacted to at least some extent. There's also urinary continence, and it's worth asking if the tumor is near the apex (bottom) of the prostate, where it can have more impact on continence after prostatectomy.

User
Posted 30 May 2022 at 17:25
Juddy, I think one reason why the choice tends to be bounced over to the patient is that the research data suggests all the main options work equally well in fending off recurrence.

However a couple of points to make about that: first, by definition any study looking at whether patients remain clear of cancer after 10 years will give you information on treatments as they were 10 years ago. There have of course been developments since then, but the impression (to me) is that advances have been further on the radiotherapy side than surgery.

Second is that recurrence is pretty common with all treatments, you are talking about up to a third of men having a detected rise in PSA eventually. As Andy says, it is relatively straightforward having later radiotherapy if cancer reappears after surgery, whereas the opposite is rarely possible for technical surgical reasons. Plus if your prostate is removed you should be producing zero PSA which means a rise is easily identified allowing prompt action; after initial radiotherapy you still have a prostate including non-cancerous cells able to produce PSA once you come off hormone therapy.
User
Posted 29 May 2022 at 23:20
Ask for a referral to a HIFU specialist to just talk it through - consultants are often dismissive of things that they themselves don't offer, and HIFU may be an excellent choice for a man who would otherwise be suitable for AS.

You can't know until you have a consultation with someone who knows what they are talking about.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 May 2022 at 04:17

HIFU is one focal therapy treatment, of which there are a few. If you are interested in a focal therapy, you might want to get referred somewhere that does more than just HIFU, in case another one might be appropriate.


If you are within traveling distance of UCLH in London, they specialise in focal therapies and might advise which is best for you. Some other centres probably do multiple focal therapies too.

User
Posted 30 May 2022 at 07:20

Originally Posted by: Online Community Member
Gleason 3+4 but with such a low level of pattern 4 active surveillance seems an option.


With Gleason 7 you're probably lucky to have been diagnosed early but PCa only goes in one direction. You're 57 with potentially 30+ years to live, so the sooner you act, the better. Surgery or radiotherapy might seem unpalatable but the long term alternative is rather worse.


 


Jules

User
Posted 31 May 2022 at 14:48
The most important fact in Cancer, is "Treat it early" you don't want to get into chemotherapy territory do you?.
Where your days will not only be numbered, but pretty unpleasant, too.

The Doctors can do some great things, to extend our lives these days, it was not so many years ago, that most folks, did not see their 60th birthday, some many years before.

These days, over nourishment is a frequent factor in life length - keep that weight down.
User
Posted 01 Jun 2022 at 11:48

Juddy


 


my experience is undertake a lot of your own research. The Uk due to the NHS and its limitations too often go down traditional routes of treatment with the attendant risks of side effects. Worth investigating focal options as part of your decision making. I opted for IRE undertaken in Germany where they are the experts as i was seeking the lowest side effects and retaining optimality (ie can have further treatments such as radiation etc later ir there was a reoccurrence). Read my post on the treatment I had


 


Good luck 

User
Posted 26 Dec 2022 at 06:47

Well 1 year on, and just had yearly MRI and all is good according to my surgeon. PSA is back where it should be and sex drive has returned with erection. I have just had an amazing year, perhaps one of the best in my life in many ways. I lost weight (4.5 stones - done through diet rather than becoming a gym bunny ) I just hope the next is as good.      

User
Posted 14 Mar 2023 at 22:08

Good news. Let's hope you never need treatment.

Dave

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User
Posted 29 May 2022 at 23:20
Ask for a referral to a HIFU specialist to just talk it through - consultants are often dismissive of things that they themselves don't offer, and HIFU may be an excellent choice for a man who would otherwise be suitable for AS.

You can't know until you have a consultation with someone who knows what they are talking about.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 May 2022 at 04:17

HIFU is one focal therapy treatment, of which there are a few. If you are interested in a focal therapy, you might want to get referred somewhere that does more than just HIFU, in case another one might be appropriate.


If you are within traveling distance of UCLH in London, they specialise in focal therapies and might advise which is best for you. Some other centres probably do multiple focal therapies too.

User
Posted 30 May 2022 at 04:42

To be a suitable patient for HIFU, your cancer has to be in that part of the Prostate where the probe can focus. Where this is not possible, suitable patients may be offered Cryotherapy. More recently UCLH have started to give Nanoknife (Irreversible Electroporation) Focal Treatment. I am not certain whether the electrodes can reach all parts of Prostate for this form of treatment, so would appreciate your asking if you consult UCLH. There are other places that do this but UCLH have the most experience in the UK. Their clinicians are excellent but the administration is poor as I and others have found, so you might have a wait.

Edited by member 27 Dec 2022 at 05:12  | Reason: wrong word used

Barry
User
Posted 30 May 2022 at 07:20

Originally Posted by: Online Community Member
Gleason 3+4 but with such a low level of pattern 4 active surveillance seems an option.


With Gleason 7 you're probably lucky to have been diagnosed early but PCa only goes in one direction. You're 57 with potentially 30+ years to live, so the sooner you act, the better. Surgery or radiotherapy might seem unpalatable but the long term alternative is rather worse.


 


Jules

User
Posted 30 May 2022 at 11:56

Hello Jim,


It's called "shared decision making", which means they are supposed to give you the information you need to make the decision. That might (I would argue, should) include listening to you to understand what your priorities, fears, etc are, and talking around how each treatment would impact those. However, I'm only too well aware that many men feel the shared decision making wasn't very shared.


At your young age, one concern I would have is that you are looking for a long time in remission. That might mean having to have more than one treatment during your life, so you might not want to start with one which is difficult to followup if the cancer comes back. That means I would consider leaving radiotherapy as an option you might take later rather than now. That's not a suggestion I often make, except in younger patients who are more likely to need a second treatment later in life. As a T2a G3+4, you might also be eligible for a focal therapy, but that's something they won't suggest unless they offer that treatment - you would need referring to a centre which does to get an opinion on it.


Then there are things like how important is sexual function to you, and for each of the treatments, how likely are they going to be preserving it. For prostatectomy, being T2a, I guess you will have at least one side nerves spared, but the other side will depend on the location of the tumor. However, even with both sets of nerves spared, erectile function isn't always preserved and is usually impacted to at least some extent. There's also urinary continence, and it's worth asking if the tumor is near the apex (bottom) of the prostate, where it can have more impact on continence after prostatectomy.

User
Posted 30 May 2022 at 17:25
Juddy, I think one reason why the choice tends to be bounced over to the patient is that the research data suggests all the main options work equally well in fending off recurrence.

However a couple of points to make about that: first, by definition any study looking at whether patients remain clear of cancer after 10 years will give you information on treatments as they were 10 years ago. There have of course been developments since then, but the impression (to me) is that advances have been further on the radiotherapy side than surgery.

Second is that recurrence is pretty common with all treatments, you are talking about up to a third of men having a detected rise in PSA eventually. As Andy says, it is relatively straightforward having later radiotherapy if cancer reappears after surgery, whereas the opposite is rarely possible for technical surgical reasons. Plus if your prostate is removed you should be producing zero PSA which means a rise is easily identified allowing prompt action; after initial radiotherapy you still have a prostate including non-cancerous cells able to produce PSA once you come off hormone therapy.
User
Posted 31 May 2022 at 14:48
The most important fact in Cancer, is "Treat it early" you don't want to get into chemotherapy territory do you?.
Where your days will not only be numbered, but pretty unpleasant, too.

The Doctors can do some great things, to extend our lives these days, it was not so many years ago, that most folks, did not see their 60th birthday, some many years before.

These days, over nourishment is a frequent factor in life length - keep that weight down.
User
Posted 01 Jun 2022 at 11:48

Juddy


 


my experience is undertake a lot of your own research. The Uk due to the NHS and its limitations too often go down traditional routes of treatment with the attendant risks of side effects. Worth investigating focal options as part of your decision making. I opted for IRE undertaken in Germany where they are the experts as i was seeking the lowest side effects and retaining optimality (ie can have further treatments such as radiation etc later ir there was a reoccurrence). Read my post on the treatment I had


 


Good luck 

User
Posted 12 Jun 2022 at 07:36
I had Cryotherapy undertaken just before Christmas last year. The cancer was diagnosed in the August having had a Kidney Stone, which prompted an MRI, which showed up another stone and a shadow on the Prostate. The stone was disintegrated on the NHS and the Cancer journey as it seems to be called began.
I am lucky to have private health care, and also a few friends who are GP,s and indeed surgeons. and it was they who said check out alternatives, as in the North of the UK treatment appears to be removal or Radiotherapy. The surgery took place privately in Southampton after a Biopsy under a GA in London. The surgery went well, and I had follow up MRA in late Feb and PSA test, and both came back good. My surgeon told me to now "get on with your life" as he did not expect to see me again.

There have been no side effects, apart from a drop in Labido which I hope will come back in time, as my surgeon advised this may take up to a year or more, but "to work on it" which I try to do with my wife !! The recovery is very quick, or it was form me. I had a catheter from the Thursday pm until following Tuesday and that was the most uncomfortable part of the whole procedure. I had to take some antibiotics for about a week but was back at work by the following Monday. Post Christmas I contracted a UTI which took time to clear up, about a month with different drugs. There will have to be checks for PSA and MRI for the rest of my life on a yearly basis, but so far, and it is very early days I would recommend the treatment v other options. However I had no symptoms, and I was very lucky that it was picked up early by accident.
User
Posted 19 Jun 2022 at 21:44
Well as an update I just got the result back from my first PSA test under AS and it seems my PSA dropped from 8.1 to 4.5 which seems a little strange, I have a mtg with the oncologist to discuss the result and any next steps.

At the same time I have contacted a certain professor in London about focal therapy, he has reviewed my MRI and biopsy results and feels I am a candidate and the next step is for my MRI to be reviewed and then to have a call with the professor to discuss options.

So I will continue to explore all options before making a decision.
User
Posted 20 Jun 2022 at 11:06

PSA is a bit more variable than you would expect. I know people on active surveillance who's PSA bobs up and down between about 8 and the low teens. My own PSA started about 28 but three weeks later was 22. If your results had came in the other way around we would be panicking and talking about PSA doubling time, the surgeon would be sharpening his knives. Fortunately this random fluctuation was in the right direction.


My psa post radiotherapy has been 0.1, 0.2, 0.1, 0.2 if you just take the first or second two in isolation you are talking about a PSA doubling. Really it is just a steady PSA.


If HIFU is on the cards it might be worth it. The side effects are very low, and you will probably knock the cancer back 20 years. If you stay on AS the cancer might stay dormant for 20 years or more anyway.

Dave

User
Posted 26 Dec 2022 at 06:47

Well 1 year on, and just had yearly MRI and all is good according to my surgeon. PSA is back where it should be and sex drive has returned with erection. I have just had an amazing year, perhaps one of the best in my life in many ways. I lost weight (4.5 stones - done through diet rather than becoming a gym bunny ) I just hope the next is as good.      

User
Posted 21 Jan 2023 at 22:16
Update

Since June I have had 3 PSA tests whilst on AS, all have been around 4 so that is encouraging.

The professor in London reviewed my scan and biopsy results and thinks this could have been a random pick-up

I have a repeat MRI, 3 Tesla in a March and a follow up mtg with the professor in March, mentally it is not an easy journey, a big part of me says get treatment but I read a lot about over treatment, guess I will wait and see what March brings
User
Posted 14 Mar 2023 at 19:44

As an update I had the 3 Tesla MRI scan early March and today had a call with my consultant about the results, situation was stable, still no significant tumor visible on the MRI, PSA remains around 4 so we agreed I should stay on AS for the next year and repeat the MRI and do 6 monthly PSA checks. I consider this good news as I have been thinking a lot recently about quality of life. Life on AS can be mentally challenging, especially in the first year, but now hear one is done at least I know what is required going forward.

Edited by member 14 Mar 2023 at 19:48  | Reason: Not specified

User
Posted 14 Mar 2023 at 22:08

Good news. Let's hope you never need treatment.

Dave

User
Posted 15 Mar 2023 at 10:12

Thanks for posting Juddy. I am in a similar position as you were but am right at the beginning of the process. I am inclined to go with AS despite many people saying they wouldn’t recommend it, or perhaps more accurately that they wouldn’t do it. I also have a good friend who is a very senior clinician at a large teaching hospital and he says try AS for while and see how it goes, but my mind isn’t made up yet. 


Tom

User
Posted 15 Mar 2023 at 10:56
It is difficult, the first response is always to get treatment but I think that is the natural response to the shock. It is important to take time to really research and understand the options and make an informed decision. I am happy with my choice but from previous post you will see my biopsy results showed the smallest amount of cancer, I was lucky having private medical insurance allowed me to get a second opinion from a leading professor and as I say the first year can be challenging but as long as you explore all options keep a close watch on PSA and any changes every 3 or 6 months and annual MRI to see if anything is changing then it is a good option for me but each person needs to make that informed decision, good luck
 
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