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What to do - aged 52? Watch, HOLEP (and watch) or Prostatectomy

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User
Posted 18 Apr 2024 at 11:27

I was diagnosed with Gleason 6 cancer (in one sample) in January 2023 - I also have an enlarged prostate which got me into the urology system aged 47.

After the cancer diagnosis I went along with the active surveillance and had another MRI in January of 2024. The MRI showed that the area of concern had got a bit bigger so I had another biopsy in April 2024. The second biopsy was practically the same but with two samples of Gleason 6. 

Bearing in mind that I have two issues (the cancer and enlarged prostate), my consultant gave me the following options:-

1. Continue with the active surveillance.

2. A HOLEP procedure to ease the general water-works symptoms (that regularly remind me of the cancer) - and then surveillance.

3. A robotic removal of the prostate. 

There are obviously pros and cons with each procedure. I am pretty anxious by nature so the surveillance route never sat very comfortably with me. As soon as I come to terms with it something seems to come out of the woodwork (such as an increased PSA) to spark my anxiety again. Having said that, I take some comfort from the fact that the cancer is on the radar so any deterioration should be spotted quickly and actioned accordingly.

My initial response was to go for the prostatectomy and just get it dealt with - but I am concerned about the long term side-effects. I appreciate that it's never completely "dealt with" but I would hope that, as the cancer is a lower grade, it should be more "dealt with" than any of the other options; this is one of my questions for the consultant - another question is where does radiotherapy sit in the scheme of things? The short term effects of the prostatectomy don't really bother me.

I just wondered if anyone else was in a similar situation. I am particularly interested in advice about the longer term side-effects from anyone who has had a prostatectomy.

Good luck everyone.

User
Posted 18 Apr 2024 at 15:55

You might find the following video of interest, especially the section from 4.55 to 7.09 (though bear in mind that this is set in the USA).

https://www.youtube.com/watch?v=mnHGyEsxXO4

Dr Scholz would certainly favour AS for a Gleason 3+3 rather than going for radical treatment with possibly irreversible side effects. His view on the appropriate monitoring process seems to be to do annual MRIs and then targeted biopsies only if the MRI shows up some significant change. No doubt other doctors may have different protocols. This is not ideal but has to be weighed against the risk of major side effects from radical treatments, whether radiotherapy or surgery. One important point point to bear in mind about AS is that, if you find at some later date that your view has changed and you can't live with the uncertainty, then you can always opt for treatment at that point, whereas there is no going back from radical treatment. 

I would suggest that you take time to consult and do research before you make the decision - I know it is easy to say but you are very young (by the standards of this site !) and you have potentially decades of life ahead to live and you will of course want to maximise the quality of that future life.

Good luck with whatever you decide.

User
Posted 18 Apr 2024 at 16:43

This article suggests AS is increasingly becoming  the most popular option for low grade prostate cancer.

26.5% in 2014, up to 59.6% in 2021

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

I was told that about 30% of those on AS will find their disease progresses and will need to have radical treatment, but to me those odds aren't too bad.

As for PSA test anxiety, as far as I'm concerned you get it whilst awaiting initial diagnosis, worrying whether you've got cancer. 

You get it whilst you're on AS, worrying about whether the cancer is progressing.

You get it following radical treatments, worrying about whether you got rid of all the cancer. 

Even when it appears you have got rid of it, you then start worrying whether it'll come back again. 

 

Edited by member 18 Apr 2024 at 17:09  | Reason: Link added

User
Posted 19 Apr 2024 at 00:04
If you were my partner or brother, I would go HOLEP without any hesitation at all. The difference it can make to quality of life for a man with a very enlarged prostate is significant and you are still young so your prostate is only going to get bigger! There is also TURP which is similar to HOLEP but surgical rather than laser so the removed tissue can be inspected under a microscope ... very reassuring when the TURP findings confirm the biopsy findings and perhaps gives you more confidence for AS?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Apr 2024 at 17:28
Hi there, if it is any help I was diagnosed with Gleeson 6 cancer, confined to the prostate nearly twenty years ago. I opted for active surveillance with bi-annual PSA tests and an in-person consultation with my specialist every twelve months under the ProTect regime.

I had no invasive treatment until three years ago when I had the Holep procedure due to retention issues which were becoming somewhat troublesome to put is mildly.

I only get a little anxious before the PSA test (which is natural) otherwise I don't give it any thought. I would stress however that I consider myself one of the lucky ones in that the cancer has not progressed in all that time.

I used to be a regular contributor and I have to say the people on the forum were, and still are a great help when it comes to advice and support.

David

User
Posted 01 May 2024 at 10:47

Hi Andy,

Apologies if my comment worried you - I think there's always a danger on this kind of forum that we latch on to something that triggers us. I know that it's happened with me in the past.

When I left the consultation with the three options, I thought that the prostatectomy would "deal with it" once and for all - having read up a bit more on it I am quite sure that whichever option I go with I'll probably remain on active monitoring (which is ever so slightly "not completely dealt with"). It's one of my questions for the consultant just so I'm sure.

I hope that this clarifies it a bit.

Apologies again - and good luck,

Matthew

User
Posted 30 May 2024 at 10:44

Here is another more detailed discussion of Gleason 6 and active surveillance by Dr Scholz.

In my view he does make quite a powerful case but one thing that strikes me is that he seems to take it for granted that men will have easy access to fairly regular MRIs and PSMA PET scans. It is therefore possible that the kind of monitoring that he advocates in order to make active surveillance attractive is much more readily available in the USA than in other countries.

https://www.youtube.com/watch?v=a0sjUallZQU

 

Edited by member 30 May 2024 at 10:46  | Reason: Not specified

User
Posted 31 May 2024 at 09:12
I'm with Techguy on this one - to me, the diagnosis can never be 100% definitive and the only way they really know is when the prostate is on the lab bench being examined. If RP is on the table, as it was for me, then I'd seriously consider it. I was under-diagnosed at the time and am now on salvage RT - so definitely something to bear in mind.
User
Posted 31 May 2024 at 11:01

Another study appeared yesterday generally supporting active surveillance for low risk cancer.

https://jamanetwork.com/journals/jama/article-abstract/2819352?resultClick=1

Obviously this an individual decision, and there will be a lot of factors to take into account. It's all about balancing various risks.

For what little it is worth my own personal view is that the possibility of avoiding prostatectomy/radiation for a long time, and maybe even indefinitely is a prize not to be sneezed at.

Even in those cases where treatment is eventualy required, there are competing factors to consider:

On the one hand, as some have said, there is the possibility that the final outcome might be worse if treatment is done later.

On the other hand, however, that is only a possibility and will not necessarily be the case by any means. And in the meantime:

a. those extra years of life to be enjoyed without treatment could be very valuable

b. techniques of treatments may improve and there may even be better treatments coming along that aren't available now.

 

User
Posted 31 May 2024 at 11:11

Best of luck. We are all here if you need a sounding board

User
Posted 31 May 2024 at 11:37

Generally, this site, through no fault of its own, is hugely biased towards AS failure. Those who've found it a successful option, have no need to visit the forum.  In fact, the same applies to all treatment options.  I adore this forum, but it should carry a warning, 'We tend to focus on poor outcomes' πŸ˜‰

Edited by member 31 May 2024 at 12:07  | Reason: Typo

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User
Posted 18 Apr 2024 at 13:37

Originally Posted by: Online Community Member

After the cancer diagnosis I went along with the active surveillance and had another MRI in January of 2024. The MRI showed that the area of concern had got a bit bigger so I had another biopsy in April 2024. The second biopsy was practically the same but with two samples of Gleason 6. 

Hello mate, I"m sorry that you've had to find us but glad you have. Welcome to the forum.

You've had two biopsies that both indicate low grade Gleason (3+3) cancer, that presumably is well contained within the prostate. I'm not sure what you mean about the second biopsy being the same but with two samples of Gleason 6. Do you mean that two of the cores taken on the second biopsy showed Gleason 6 or do you mean that another Gleason 6 tumour had been found within the prostate. 

I believe that it is rare for your Gleason score to get higher, so unless you're very lucky and both biopsies missed more dangerous cancer cells, I would continue with AS. Having said that, I'd want to know exactly how much the disease and progressed in the months between biopsies.  My only other word of caution is, you do need to be of a particular mindset for AS. You need to accept that you've got cancer but that you're happy with it just being monitored.

Unfortunately, I don't know much about the HOLEP procedure or it's side effects. I was on AS for 18 months, which unfortunately failed for me. I ended up having a prostatetomy, and still have side effects from it. 

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP.

Best of luck with whichever option you choose.

 

Edited by member 18 Apr 2024 at 14:16  | Reason: Additional text

User
Posted 18 Apr 2024 at 14:51

Thanks Adrian. Just to clarify - as I understood it, the same tumour had got a bit bigger (so both cores from the same area). The consultant was quite re-assuring in that nothing had really changed from a practical point of view.

I understand what you're saying about the mindset for surveillance. It's obviously a big shock when we're first told - but I got used to the new norm. PSA time can be a worry though - and I can't help wondering that if I stay with the AS I'd be having MRI's and biopsies every year. If only we had crystal ball!!

One thing is for certain though - these bumps along the road do remind me to appreciate the little stuff.

Thanks again.

User
Posted 18 Apr 2024 at 15:55

You might find the following video of interest, especially the section from 4.55 to 7.09 (though bear in mind that this is set in the USA).

https://www.youtube.com/watch?v=mnHGyEsxXO4

Dr Scholz would certainly favour AS for a Gleason 3+3 rather than going for radical treatment with possibly irreversible side effects. His view on the appropriate monitoring process seems to be to do annual MRIs and then targeted biopsies only if the MRI shows up some significant change. No doubt other doctors may have different protocols. This is not ideal but has to be weighed against the risk of major side effects from radical treatments, whether radiotherapy or surgery. One important point point to bear in mind about AS is that, if you find at some later date that your view has changed and you can't live with the uncertainty, then you can always opt for treatment at that point, whereas there is no going back from radical treatment. 

I would suggest that you take time to consult and do research before you make the decision - I know it is easy to say but you are very young (by the standards of this site !) and you have potentially decades of life ahead to live and you will of course want to maximise the quality of that future life.

Good luck with whatever you decide.

User
Posted 18 Apr 2024 at 16:32

Thanks for the reply. I am coming around to the same opinion (favouring AS) the more I think about it.

I'm very fortunate in that I don't have to rush anything. At the moment I'm at the stage of listing my questions for the consultant then I'll take it from there.

I'm quite wary of Googling and Youtube because there's a lot of faff out there - but that video was very good - thanks.

 

User
Posted 18 Apr 2024 at 16:43

This article suggests AS is increasingly becoming  the most popular option for low grade prostate cancer.

26.5% in 2014, up to 59.6% in 2021

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

I was told that about 30% of those on AS will find their disease progresses and will need to have radical treatment, but to me those odds aren't too bad.

As for PSA test anxiety, as far as I'm concerned you get it whilst awaiting initial diagnosis, worrying whether you've got cancer. 

You get it whilst you're on AS, worrying about whether the cancer is progressing.

You get it following radical treatments, worrying about whether you got rid of all the cancer. 

Even when it appears you have got rid of it, you then start worrying whether it'll come back again. 

 

Edited by member 18 Apr 2024 at 17:09  | Reason: Link added

User
Posted 18 Apr 2024 at 17:58

My brother has been on AS for over 5 years. However make sure that you keep an eye on your appointments. My brother has to contact urology himself when he is due for another PSA, MRI etc. I usually nag him because he can be a bit lapse about it.

User
Posted 18 Apr 2024 at 18:02

Thanks Jim - I know what you mean about keeping your eye on the appointments. I had to chase a couple of blood tests and the MRI. 

User
Posted 19 Apr 2024 at 00:04
If you were my partner or brother, I would go HOLEP without any hesitation at all. The difference it can make to quality of life for a man with a very enlarged prostate is significant and you are still young so your prostate is only going to get bigger! There is also TURP which is similar to HOLEP but surgical rather than laser so the removed tissue can be inspected under a microscope ... very reassuring when the TURP findings confirm the biopsy findings and perhaps gives you more confidence for AS?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2024 at 07:51

Thanks Lyn. HoLEP with ongoing AS is looking favourable at the moment. I just need to ask the consultant some questions before making the final decision..

User
Posted 30 Apr 2024 at 17:28
Hi there, if it is any help I was diagnosed with Gleeson 6 cancer, confined to the prostate nearly twenty years ago. I opted for active surveillance with bi-annual PSA tests and an in-person consultation with my specialist every twelve months under the ProTect regime.

I had no invasive treatment until three years ago when I had the Holep procedure due to retention issues which were becoming somewhat troublesome to put is mildly.

I only get a little anxious before the PSA test (which is natural) otherwise I don't give it any thought. I would stress however that I consider myself one of the lucky ones in that the cancer has not progressed in all that time.

I used to be a regular contributor and I have to say the people on the forum were, and still are a great help when it comes to advice and support.

David

User
Posted 30 Apr 2024 at 17:40

Thanks David, I’ve more less decided to go with the HoLEP and remain on active surveillance. I am just waiting for my consultant to answer my questions before making a definite decision. 

Matthew

User
Posted 30 Apr 2024 at 18:45

Matthew,

I'm in a similar situation to you in that I have two problems to solve.: Nocturia caused by an enlarged prostate and a Gleason 3 + 4 diagnosis. See my profile for detail.

I'm waiting to see a urologist and an oncologist. The cancer specialist nurse thinks I'll be offered AS but that wont solve my nocturia. I've not had longer than two and a half hours continuous sleep for over two years.

I took part in a clinical trail comparing Urolift against a newish procedure called It Itind. I was randomised into the Itind strand. Six months later my Nocturia remains.

I wasn't offered Holep because the other two options are minimally invasive.

You may not be being offered Urolift because your prostate is large and enlarged whereas mine was small (33c) and enlarged. This is a guess on my behalf. It would be worth asking the question, though.

Assuming you go for Holep, a friend of mine had this procedure and considers it a great success.

Best wishes,

Keith

User
Posted 30 Apr 2024 at 21:19

Originally Posted by: Online Community Member

I was diagnosed with Gleason 6 cancer (in one sample) in January 2023 - I also have an enlarged prostate which got me into the urology system aged 47.

After the cancer diagnosis I went along with the active surveillance and had another MRI in January of 2024. The MRI showed that the area of concern had got a bit bigger so I had another biopsy in April 2024. The second biopsy was practically the same but with two samples of Gleason 6. 

Bearing in mind that I have two issues (the cancer and enlarged prostate), my consultant gave me the following options:-

1. Continue with the active surveillance.

2. A HOLEP procedure to ease the general water-works symptoms (that regularly remind me of the cancer) - and then surveillance.

3. A robotic removal of the prostate. 

There are obviously pros and cons with each procedure. I am pretty anxious by nature so the surveillance route never sat very comfortably with me. As soon as I come to terms with it something seems to come out of the woodwork (such as an increased PSA) to spark my anxiety again. Having said that, I take some comfort from the fact that the cancer is on the radar so any deterioration should be spotted quickly and actioned accordingly.

My initial response was to go for the prostatectomy and just get it dealt with - but I am concerned about the long term side-effects. I appreciate that it's never completely "dealt with" but I would hope that, as the cancer is a lower grade, it should be more "dealt with" than any of the other options; this is one of my questions for the consultant - another question is where does radiotherapy sit in the scheme of things? The short term effects of the prostatectomy don't really bother me.

I just wondered if anyone else was in a similar situation. I am particularly interested in advice about the longer term side-effects from anyone who has had a prostatectomy.

Good luck everyone.

My Gleason is 7 in 2 cores 56 years old and they recommended the op, at 6 they just wanted to watch, my surgeon, support team tell me theres a whole host of issues afterwards. They told me radiotherapy causes problems 15 years down the road and as I was young ish they prefer to avoid radiotherapy.

Your comment "I appreciate that it's never completely dealt with" what do you mean?

Please tell me, now I'm worried 

User
Posted 30 Apr 2024 at 21:43
Hi Matthew, the ProTect study I mentioned earlier was a randomised trial comparing radiotherapy, surgery and active surveillance.

Although I was randomised to radiotherapy I opted for AS but still stayed part of the study.

You asked where radiotherapy fitted in; my thought was that as I was still working and the treatment was often daily together with the possible long-term/delayed effects I did not fancy having it. My second 'choice' was surgery if AS failed.

David

User
Posted 01 May 2024 at 10:47

Hi Andy,

Apologies if my comment worried you - I think there's always a danger on this kind of forum that we latch on to something that triggers us. I know that it's happened with me in the past.

When I left the consultation with the three options, I thought that the prostatectomy would "deal with it" once and for all - having read up a bit more on it I am quite sure that whichever option I go with I'll probably remain on active monitoring (which is ever so slightly "not completely dealt with"). It's one of my questions for the consultant just so I'm sure.

I hope that this clarifies it a bit.

Apologies again - and good luck,

Matthew

User
Posted 01 May 2024 at 10:54

Hi Keith - thanks for the message. I was keen to try the Urolift before my diagnosis changed (from BHP). My prostate was about 60cc two years ago so I assume that it's too large - I will ask the question though.

Thanks,

Matthew

User
Posted 30 May 2024 at 10:44

Here is another more detailed discussion of Gleason 6 and active surveillance by Dr Scholz.

In my view he does make quite a powerful case but one thing that strikes me is that he seems to take it for granted that men will have easy access to fairly regular MRIs and PSMA PET scans. It is therefore possible that the kind of monitoring that he advocates in order to make active surveillance attractive is much more readily available in the USA than in other countries.

https://www.youtube.com/watch?v=a0sjUallZQU

 

Edited by member 30 May 2024 at 10:46  | Reason: Not specified

User
Posted 30 May 2024 at 11:39

Thanks for that. I'm finding Mr Scholz more use than my own consultant at the moment (who seems very reluctant to answer some simple questions that I put to him).

I'd also picked up on the fact that there may be some differences between the US and UK procedures - but I think that the advice seems pretty sound.

User
Posted 30 May 2024 at 12:05

Hi Humphrey 

If ultimately you will be having a RARP I’d lean towards having it done sooner rather than later. As with all cancers the earlier it’s dealt with the less likely it’s spread. I thought I was acting early when I had mine out….turns out it was fortunate I didn’t take the MDTs advice and go on AS as there were sneaky type four cells setting up shop and the cancer was very close to going T3 πŸ₯ΆπŸ˜΅‍πŸ’«

 

Edited by member 30 May 2024 at 12:08  | Reason: Not specified

User
Posted 30 May 2024 at 12:11

Thanks TechGuy,

That's actually one the questions I've asked the consultant (is it better to have the surgery sooner?). Based on the research I've done, I am more or less sure that I'll go with the HoLEP for now. I see that as a sort of half-way house - it will sort out my enlarged prostate symptoms and the bits they remove can be analysed.

I am currently on the search for a new consultant as my current one is proving very difficult to get any answers from - and a second opinion won't hurt anyway.

User
Posted 31 May 2024 at 06:38

Second opinion very good indeed. I did the same when I felt a loss of synergy with my initial team.

Are you going private or NHS? UCLH guys are very good I hear. I used an amazing surgeon at Santis Health….top of his game and they use the new Da Vinci single port system at Guys Cancer Centre. Initially saw him for second opinion but he was so well regarded and I got a great vibe and all the right answer when we met I went with him for surgery….would use him all over again without hesitation. 

Edited by member 31 May 2024 at 06:41  | Reason: Not specified

User
Posted 31 May 2024 at 09:12
I'm with Techguy on this one - to me, the diagnosis can never be 100% definitive and the only way they really know is when the prostate is on the lab bench being examined. If RP is on the table, as it was for me, then I'd seriously consider it. I was under-diagnosed at the time and am now on salvage RT - so definitely something to bear in mind.
User
Posted 31 May 2024 at 10:13

Originally Posted by: Online Community Member
I'm with Techguy on this one - to me, the diagnosis can never be 100% definitive and the only way they really know is when the prostate is on the lab bench being examined..

But having your prostate removed to be sure of diagnosis is a bit drastic. This disease is all about risk. As you unfortunately know even surgery doesn't eliminate recurrence. They'll always be different options and experiences of AS. I was told that about 30% of those on AS would later require radical treatment. They seemed good odds to me. 

User
Posted 31 May 2024 at 10:46

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
I'm with Techguy on this one - to me, the diagnosis can never be 100% definitive and the only way they really know is when the prostate is on the lab bench being examined..

But having your prostate removed to be sure of diagnosis is a bit drastic. This disease is all about risk. As you unfortunately know even surgery doesn't eliminate recurrence. They'll always be different options and experiences of AS. I was told that about 30% of those on AS would later require radical treatment. They seemed good odds to me. 

Surgery can be curative if actioned early enough. Assuming spread hasn’t occurred either via mets or extra cellular debris which occur during biopsy.  

Type 3 cells (Gleason 6) are not strictly in situ (although less likely to migrate) or a pre-cancerous neoplasm…they are cancer and encompass all the pathological traits of a cancer cell and as such have the mechanics to metastasise. 

 

Edited by member 31 May 2024 at 10:49  | Reason: Not specified

User
Posted 31 May 2024 at 11:01

Another study appeared yesterday generally supporting active surveillance for low risk cancer.

https://jamanetwork.com/journals/jama/article-abstract/2819352?resultClick=1

Obviously this an individual decision, and there will be a lot of factors to take into account. It's all about balancing various risks.

For what little it is worth my own personal view is that the possibility of avoiding prostatectomy/radiation for a long time, and maybe even indefinitely is a prize not to be sneezed at.

Even in those cases where treatment is eventualy required, there are competing factors to consider:

On the one hand, as some have said, there is the possibility that the final outcome might be worse if treatment is done later.

On the other hand, however, that is only a possibility and will not necessarily be the case by any means. And in the meantime:

a. those extra years of life to be enjoyed without treatment could be very valuable

b. techniques of treatments may improve and there may even be better treatments coming along that aren't available now.

 

User
Posted 31 May 2024 at 11:08

Thanks for these comments. They're all questions I was going to ask my consultant. I am in the process of changing consultants at the moment as my original one seems too busy to respond (after telling me to put my questions in an email to him).

Thanks.

Edited by member 31 May 2024 at 13:25  | Reason: Not specified

User
Posted 31 May 2024 at 11:11

Best of luck. We are all here if you need a sounding board

User
Posted 31 May 2024 at 11:37

Generally, this site, through no fault of its own, is hugely biased towards AS failure. Those who've found it a successful option, have no need to visit the forum.  In fact, the same applies to all treatment options.  I adore this forum, but it should carry a warning, 'We tend to focus on poor outcomes' πŸ˜‰

Edited by member 31 May 2024 at 12:07  | Reason: Typo

 
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