Prostate cancer options

[sidjameson]

In the UK at the moment. Mid 50's. Had a couple of PSA tests. 3.9 and 3.6 Then an MRI which showed a 12mm lesion. Went for the biopsy, getting results on Tuesday 15th. The Dr already said that given my age and health (generally pretty good) he would recommend a prostatectomy!!!!

 

Haven't had results yet, but preparing for the worst. Would appreciate others experiences. Willing to have treatment here on NHS or pay back in Thailand.

 

Just want the best decision based on survival and quality of life. This is part of my research. Thanks.

[Sheryl]

At your comparatively young age, and assuming a localized cancer,  main choice would be between prostatectomy and radiation.  And within thise categories there are additional choicese.g. conventional vs robotic surgery, widebeam radiation vs. Implants (brachytherapy).

 

Precise biopsy findings would help guide this. And indeed since you don't yet have biopsy result, possible you do not even have cancer. 

 

If results come back malignant suggest you get more than one opionion in UK. Note that possible to get consultation  privately, you don't have to limit yourself to NHS for that. (Indeed, even private treatment in UK is similar to costs of private care in Thailand.) 

 

Where in UK are you? 

 

 

[sidjameson]

Thank you Sheryl.

I'm in Exeter, south west England.

 

[Sheryl]

3 hours ago, sidjameson said:

Thank you Sheryl.

I'm in Exeter, south west England.

 

https://www.nuffieldhealth.com/consultants/mr-miles-a-goldstraw

 

once you have biopsy results, and if they show malignancy

[sidjameson]

3 hours ago, Sheryl said:

https://www.nuffieldhealth.com/consultants/mr-miles-a-goldstraw

 

once you have biopsy results, and if they show malignancy

Thank you

[simon43]

Don't assume that it's cancer.  I traveled back to the UK 18 months ago after 2 lumps appeared on a Bumrungrad MRI.  My PSA was around 14.  But my NHS doctor said cancer unlikely, based on his own experience and stats.  After 24 biopsy samples, no cancer found, but benign calcium stones found in my prostate!  So wait for your biopsy results and good luck! (I was 64 years old at the time).

[sidjameson]

1 hour ago, simon43 said:

Don't assume that it's cancer.  I traveled back to the UK 18 months ago after 2 lumps appeared on a Bumrungrad MRI.  My PSA was around 14.  But my NHS doctor said cancer unlikely, based on his own experience and stats.  After 24 biopsy samples, no cancer found, but benign calcium stones found in my prostate!  So wait for your biopsy results and good luck! (I was 64 years old at the time).

Thanks Simon. Hard not to go to worst case scenario, at least for me 😂

 

[LivinLOS]

On 10/13/2024 at 8:57 AM, sidjameson said:

Thank you Sheryl.

I'm in Exeter, south west England.

 

Father has had superb treatment at nuffield for prostate and under a (very fair priced) copay for bupa. 

[simon43]

3 hours ago, sidjameson said:

Thanks Simon. Hard not to go to worst case scenario, at least for me 😂

 

Yes, it's important to consider the worst case scenario and what your options are.  I went through all of this, allayed my fears, identified a path that I preferred to go down that seemed the best for my future health.  It was a big shock (and happy present) when the NHS nurse phoned me late on a Friday evening to say that no cancer cells were found 🙂

[sidjameson]

2 hours ago, simon43 said:

Yes, it's important to consider the worst case scenario and what your options are.  I went through all of this, allayed my fears, identified a path that I preferred to go down that seemed the best for my future health.  It was a big shock (and happy present) when the NHS nurse phoned me late on a Friday evening to say that no cancer cells were found 🙂

Simon, I've just found this....

Now as a lay person it seems to suggest all outcomes are the same regardless of taking surgery or even doing nothing, at least over a 15 year period.

I know you're a scientist and no doubt smarter than me. I'd probably take 15 years and see....and average age of death is 80...I'd certainly take that.

I prioritise healthy lifestyle and would rather live less years but not incontinent than get on average a few extra years but die not with my boots on but a nappy instead!

 

Any thoughts?

 

https://www.ox.ac.uk/news/2023-03-13-study-shows-delaying-treatment-localised-prostate-cancer-does-not-increase-mortality

Edited October 14 by sidjameson

[simon43]

I'm no doctor 🙂 (Ask Sheryl).  But my understanding of prostate cancer is that it is usually a slow-progressing kind of cancer, and many men who opt for no treatment die WITH prostate cancer, but not BECAUSE of prostate cancer.

 

But then there are the small number of prostate cancer cases which advance rapidly, and which could be slowed by medical treatments.

 

I think the idea that all those who have had prostate cancer treatment have to wear a nappy is far from correct.  Bear in mind (with my non-doctor's hat on), that it's bladder control (or lack of it) that leads to urinary incontinence, not issues with your prostate (please check this with Sheryl!).

 

I have perfect bladder control, but my BPH and UTIs mean that I use the toilet many times each day, just to relieve the sensation of wanting to pee.  But I can sleep a full night and travel outside for hours without needing to pee - I just need to put that sensation out of my mind.

 

If I were 75 years old and had prostate cancer, I might consider having no medical treatment.  But at a younger age, and in otherwise good health, I (personally) would prefer to seek some treatment (and of course there are various options).

 

 

[still kicking]

Let me ask a silly question how do you know you have prostate cancer? 

[simon43]

8 minutes ago, still kicking said:

Let me ask a silly question how do you know you have prostate cancer? 

The only sure way (I'm not a doctor), is with a biopsy to withdraw cells from your prostate and then examine them for signs of cancer.

 

A raised PSA can be an indication of prostate cancer, but it doesn't confirm cancer.  My PSA value is always about 9, but I don't have cancer.  It's raised because of BPH and UTIs.

 

An MRI can detect unusual lumps inside your prostate, but it doesn't confirm cancer.  My MRI shows 2 lumps inside my prostate, but they turned out to be benign cancer stones.

[still kicking]

4 minutes ago, simon43 said:

The only sure way (I'm not a doctor), is with a biopsy to withdraw cells from your prostate and then examine them for signs of cancer.

 

A raised PSA can be an indication of prostate cancer, but it doesn't confirm cancer.  My PSA value is always about 9, but I don't have cancer.  It's raised because of BPH and UTIs.

 

An MRI can detect unusual lumps inside your prostate, but it doesn't confirm cancer.  My MRI shows 2 lumps inside my prostate, but they turned out to be benign cancer stones.

So I guess I am wasting my time getting this done I am 77 now and will kick the bucked shortly. 

[simon43]

31 minutes ago, still kicking said:

So I guess I am wasting my time getting this done I am 77 now and will kick the bucked shortly. 

Unless of course if you have a very aggressive form of prostate cancer, in which case you might be dead in 6 months....... 🙂

[scubascuba3]

7 hours ago, sidjameson said:

Simon, I've just found this....

Now as a lay person it seems to suggest all outcomes are the same regardless of taking surgery or even doing nothing, at least over a 15 year period.

I know you're a scientist and no doubt smarter than me. I'd probably take 15 years and see....and average age of death is 80...I'd certainly take that.

I prioritise healthy lifestyle and would rather live less years but not incontinent than get on average a few extra years but die not with my boots on but a nappy instead!

 

Any thoughts?

 

https://www.ox.ac.uk/news/2023-03-13-study-shows-delaying-treatment-localised-prostate-cancer-does-not-increase-mortality

i posted about this months ago, Dr John McDougall has been saying this for years, there's also risks doing the biopsy 

[Sheryl]

15 hours ago, sidjameson said:

Simon, I've just found this....

Now as a lay person it seems to suggest all outcomes are the same regardless of taking surgery or even doing nothing, at least over a 15 year period.

I know you're a scientist and no doubt smarter than me. I'd probably take 15 years and see....and average age of death is 80...I'd certainly take that.

I prioritise healthy lifestyle and would rather live less years but not incontinent than get on average a few extra years but die not with my boots on but a nappy instead!

 

Any thoughts?

 

https://www.ox.ac.uk/news/2023-03-13-study-shows-delaying-treatment-localised-prostate-cancer-does-not-increase-mortality

 

This study was limited to men aged 50 and over with low and intermediate grade cancers only.

 

Not applicable to aggressive cancers or cancers in younger men.

 

Naturally, when dealing with slow growing cancers in older men (whose odds of  dying of something else are comparatively high anyhow) the effect of treatment on mortality is going to be quite different than it will be in men who are younger/have aggressive cancers.

 

You may also have an exaggerated impression of the consequences of surgery. Newer, nerve-sparing  robotic techniques have pretty low rates of long-term incontinence etc. (Short term, yes, but long term  is Different).

 

Meanwhile an untreated prostate cancer will, in itself, have you in nappies sooner or later.

 

But please wait for the biopsy results. This will not only tell you if malignant but also - if it is malignant - how aggressive. You can then have detailed consultations with specialists to determine pros and cons of different approaches in your specific case. "Dr. Google" cannot provide that.

[Sheryl]

14 hours ago, still kicking said:

So I guess I am wasting my time getting this done I am 77 now and will kick the bucked shortly. 

Unless you have a terminal disease, cannot assume this. Lots of people say this and are still around in 15-20 years.

 

The important thing to keep in mind is that metastatic prostate cancer usually goes to the bone which can be extremely painful. Even in the very elderly there is a definite advantage to avoiding this scenario.  And if it occurs, a definite advantage (in terms of minimizing suffering) to catching it as early as possible.

[sidjameson]

On 10/15/2024 at 6:58 AM, Sheryl said:

 

This study was limited to men aged 50 and over with low and intermediate grade cancers only.

 

Not applicable to aggressive cancers or cancers in younger men.

 

Naturally, when dealing with slow growing cancers in older men (whose odds of  dying of something else are comparatively high anyhow) the effect of treatment on mortality is going to be quite different than it will be in men who are younger/have aggressive cancers.

 

You may also have an exaggerated impression of the consequences of surgery. Newer, nerve-sparing  robotic techniques have pretty low rates of long-term incontinence etc. (Short term, yes, but long term  is Different).

 

Meanwhile an untreated prostate cancer will, in itself, have you in nappies sooner or later.

 

But please wait for the biopsy results. This will not only tell you if malignant but also - if it is malignant - how aggressive. You can then have detailed consultations with specialists to determine pros and cons of different approaches in your specific case. "Dr. Google" cannot provide that.

12 samples taken. Unfortunately 8 Gleason 3 and 3 Gleason 4. One nothing.

Dr said surgery as I'm youngish, 56. I suggested active surveillance which he agreed was an option.

[jgm005]

I had the prostate robotically surgically removed. DID NOT HAVE RADIATION. 11/2022. Live in Issan but had it done back in the States. So far all's well 

[desdeash]

Prostatectomy will adversely affect your sex life. No more ejaculations for sure, erections likely impaired or eliminated. Not sure about effects of radio or chemo therapies.

Go have a good time before treatment

[scubascuba3]

7 hours ago, jgm005 said:

I had the prostate robotically surgically removed. DID NOT HAVE RADIATION. 11/2022. Live in Issan but had it done back in the States. So far all's well 

When you say all's well, presumably there's side effects with no prostate?

[Jonnapat]

On 10/12/2024 at 8:35 PM, sidjameson said:

In the UK at the moment. Mid 50's. Had a couple of PSA tests. 3.9 and 3.6 Then an MRI which showed a 12mm lesion. Went for the biopsy, getting results on Tuesday 15th. The Dr already said that given my age and health (generally pretty good) he would recommend a prostatectomy!!!!

 

Haven't had results yet, but preparing for the worst. Would appreciate others experiences. Willing to have treatment here on NHS or pay back in Thailand.

 

Just want the best decision based on survival and quality of life. This is part of my research. Thanks.

Had a protastectamy here in Thailand in 2008 followed by radiotherapy. Still here to tell the tale. Would strongly recommend Siriraj government hospital  who have all the best equipment and surgeons.

 

 

 

Have da vinci robot also to assist. Excellent treatment for 16 years

[Sheryl]

4 hours ago, desdeash said:

Prostatectomy will adversely affect your sex life. No more ejaculations for sure, erections likely impaired or eliminated. Not sure about effects of radio or chemo therapies.

Go have a good time before treatment

Thus is rather dated information (and was never universally true). Newer nerve-sparing robitic techniques have low rates of l9ng term impitwnce.

 

 

[Sheryl]

13 hours ago, sidjameson said:

12 samples taken. Unfortunately 8 Gleason 3 and 3 Gleason 4. One nothing.

Dr said surgery as I'm youngish, 56. I suggested active surveillance which he agreed was an option.

8 gleason is a high grade cancer. 

 

Make sure you are fully informed before deciding against surgery.  Get a second opjnion ss previously suggested and get concrete estimates of risks both ways - robotic surgery vs active surveillance. With a high grade cancer like this the latter is likely to end in surgery anyway but with more risk of spread. 

 

Remember that metastatic prostate cancer can be very painful and you won't be sexually functional with it, either.  No one can guarantee anything but quite possible your best odds of long term  sexual function/urinary continence/quality of life are with robotic prostatectomy. Provided surgeon is sufficiently skilled and ecoerienced, if course. 

[sidjameson]

2 hours ago, Sheryl said:

8 gleason is a high grade cancer. 

 

Make sure you are fully informed before deciding against surgery.  Get a second opjnion ss previously suggested and get concrete estimates of risks both ways - robotic surgery vs active surveillance. With a high grade cancer like this the latter is likely to end in surgery anyway but with more risk of spread. 

 

Remember that metastatic prostate cancer can be very painful and you won't be sexually functional with it, either.  No one can guarantee anything but quite possible your best odds of long term  sexual function/urinary continence/quality of life are with robotic prostatectomy. Provided surgeon is sufficiently skilled and ecoerienced, if course. 

Oh, sorry. I wasn't clear.

 

It's Gleason 7

3+4

 

8 samples Gleason 3

3 samples Gleason 4

1 sample no cancer

[Sheryl]

7 minutes ago, sidjameson said:

Oh, sorry. I wasn't clear.

 

It's Gleason 7

3+4

 

8 samples Gleason 3

3 samples Gleason 4

1 sample no cancer

https://jamanetwork.com/journals/jama/fullarticle/187981

[jgm005]

17 hours ago, scubascuba3 said:

When you say all's well, presumably there's side effects with no prostate?

Yes there are side effects. As noted in the post above mine. 

Erection issues

Get up to pee at night more frequently.

It took, for me, to stop occasional dribbling.

Sorry, I should of noted them.

[Sheryl]

2 posts with misinformation/ conspiracy nonsense  and/or links to unreliable sources have been removed.

 

It has never bern claimed, by anyone, that the PSA test diagnoses cancer.  It  has always been known that there are non-cancerous causes of an elevated PSA (though the  odds of noncancerous cause decreases rhe higher the PSA is).

 

The PSA is dimply a preliminary screening tool, and a valuable one provided the results are used judiciously.

 

Years ago,  before the developement of sophisticated prostate-specific MRI tools,  there was a tendency by dome ficyord in some countries to  do a prostate biopsy solely on an elevated PSA ((as opposed to elevated PSA plus other clinical findings).  That was never recommended, but some patients insisted on it, and some doctors (especially in litigation-prone countries) were afraid to risk not doing it.

 

Nowadays multiparametric MRIs of the prostate have greatly  improved decision making on the need for prostate biopsy. 

 

 

[Ben Zioner]

On 10/14/2024 at 9:26 PM, sidjameson said:

Now as a lay person it seems to suggest all outcomes are the same regardless of taking surgery or even doing nothing, at least over a 15 year period.

I'd second that. For localised PCA the "Regret rate" for those who have chosen surgery or radiotherapy is twice as high as for those who elect active surveillance. The gain in life expectancy of prostatectomy patients is about 3 months.

 

I am now in the 7th year of active surveillance.