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

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

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User

Posted 18 Apr 2024 at 13:37

Originally Posted by: Online Community Member

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

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

"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

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.

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.

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.

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

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

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