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User
Posted 05 Jun 2023 at 11:48

Diagnosed with prostate cancer September 2022.


I visited my GP worried about frequent trips to the toilet and incomplete emptying of my bladder. The GP carried out a rectal examination and referred me to the urology department of my local hospital. 
Further rectal exam, MRI and trans perineal biopsy confirmed cancer Gleason 3+3. My PSA is 1.4 at this stage. The cancer is localised and has not spread outside the prostate.


Regular PSA testing has shown it to be stable at 1.4


Following a template biopsy under general anaesthetic my Gleason is now 3+4.  PSA is still 1.4 and the cancer is still localised


I’m unsure of my next step, active surveillance radiotherapy or radical prostectomy. 
If I opt for the surveillance (my preferred option) I’m worried that the cancer will have spread as my PSA levels are so low and as yet don’t indicate cancer and repeated biopsies may cause more damage to the prostate  


 


 

User
Posted 05 Jun 2023 at 12:32
Radical treatment (surgery or radiotherapy) would be using a sledgehammer to crack a nut at this stage. Assuming your cancer is common or garden adenocarcinoma (the "ordinary" type of prostate cancer) , monitoring your PSA should be a reliable way of tracking growth. With your low PSA, presumably the biopsy found only a small amount of cancer?

I'd follow your instinct and go for AS. Radical treatment may be required at some future date, or there again may not. How old are you?

Best wishes,

Chris
User
Posted 05 Jun 2023 at 12:51

Commiserations. It is a not a pleasant time. Everyone is different and the decision all depends on your particular circumstances and what the experts recommend.


I have recently undergone surgery. I also had relatively low PSA 4.5 and then 3.8 on a follow up with a Gleason  7 3+4. I was advised not to go on AS as I was in their words ‘young and fit’ (57!) and  best able to withstand treatment rather than leave it for several years when there maybe other complications or health issues in the future. 


I chose surgery for 2 reasons - get it out and provide me with options in the future if things don’t go well. Surgery will not be everyone and 7 weeks on I am dealing with the side effects. I’ve not found it easy but others have better and indeed worse experiences. 

User
Posted 05 Jun 2023 at 15:19

If they believe they know its full extent and its small and away from the edge of the prostate It's likely you could keep monitoring it.  A stable psa is usually a good indicator.


If it appears to be close to the edge you might want to be more cautious.


There might be other options to Radiotherapy and Surgery.   Brachytherapy or other more exotic treatments.  Although it depends what your hospital offers and how far you're willing to travel if they say you'll need to go elsewhere.


Your psa is very low and in by far the most cases that's a good sign.  Although there are cases where psa doesn't increase as much as you'd think.  The doctor should know roughly how large the lesion is, mine was said to be 13mm which isn't large but is getting that way, it isn't small.  I'd imagine yours is about 5mm but that's pure guesswork and if you have an enlarged prostate it makes it relatively smaller.


From how I feel now I think I'd be going for AS in your shoes.  But puttnig it into perspective how long do you think you're putting off the inevitable and are you able to have a less aggressive treatment now, e.g. Brachytherapy, than if you wait.


All the best
Peter

User
Posted 05 Jun 2023 at 20:35
Hi David,

As Cheshire Chris said, you're probably in possession of (or be able to ask for) a bit more information than you've posted which might help make up your mind.

But on the face of it, given your age and circumstances and presuming there was only a small amount of biopsy cores positive combined with the low PSA and Gleason score, there's definitely a good argument for active surveillance I would say.

Bear in mind though that staying on active surveillance should involve regular PSA tests (every 6 months) and MRI scans (every year). If your PSA starts to rise steadily and/or the scans change, then you'll need to have further biopsies.

The tool/website linked below, is based on the findings of a large scale clinical study - it's obviously not definitive but I found it useful. It gives an indication of the difference in outcomes/survival rates between choosing to go down the active surveillance (conservative) route vs the radical intervention route. I think if you enter your numbers, the difference in outcomes for your staging will be very, very marginal.

https://prostate.predict.nhs.uk/tool
User
Posted 05 Jun 2023 at 23:13
It's a tough decision David, but a PC diagnosis has given many of us the same dilemma - what might the future bring with the various options?

All the standard treatments apparently give about the same success rate in eliminating the cancer, but differ in the likelihood of short-term and long-term side effects (which anyway vary between individuals and you have no way of knowing what they will be for you). Most likely opting for AS will just delay the treatment decision for an unknown period, but with your caring responsibilities that might be the best as long as your psychology can carry the knowledge you have a cancer that could progress.

And in some ways, if you do wait until PSA rises the treatment decision may get easier. Surgery leaves you very dependent on others' support in the short term and recovery times favour younger ages, while radiotherapy is less traumatic short term (though not to be under-estimated, it drains you of energy) and your perspective on long term side effects may change if you don't need the procedure until you are already in your late seventies.
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User
Posted 05 Jun 2023 at 12:32
Radical treatment (surgery or radiotherapy) would be using a sledgehammer to crack a nut at this stage. Assuming your cancer is common or garden adenocarcinoma (the "ordinary" type of prostate cancer) , monitoring your PSA should be a reliable way of tracking growth. With your low PSA, presumably the biopsy found only a small amount of cancer?

I'd follow your instinct and go for AS. Radical treatment may be required at some future date, or there again may not. How old are you?

Best wishes,

Chris
User
Posted 05 Jun 2023 at 12:45

That’s nice to hear Chris. I thought the same, too radical at this stage for radiotherapy or surgery to end up having to undergo unnecessary treatment. with the possibility of bladder or Bowel  problems. 

User
Posted 05 Jun 2023 at 12:51

Commiserations. It is a not a pleasant time. Everyone is different and the decision all depends on your particular circumstances and what the experts recommend.


I have recently undergone surgery. I also had relatively low PSA 4.5 and then 3.8 on a follow up with a Gleason  7 3+4. I was advised not to go on AS as I was in their words ‘young and fit’ (57!) and  best able to withstand treatment rather than leave it for several years when there maybe other complications or health issues in the future. 


I chose surgery for 2 reasons - get it out and provide me with options in the future if things don’t go well. Surgery will not be everyone and 7 weeks on I am dealing with the side effects. I’ve not found it easy but others have better and indeed worse experiences. 

User
Posted 05 Jun 2023 at 15:19

If they believe they know its full extent and its small and away from the edge of the prostate It's likely you could keep monitoring it.  A stable psa is usually a good indicator.


If it appears to be close to the edge you might want to be more cautious.


There might be other options to Radiotherapy and Surgery.   Brachytherapy or other more exotic treatments.  Although it depends what your hospital offers and how far you're willing to travel if they say you'll need to go elsewhere.


Your psa is very low and in by far the most cases that's a good sign.  Although there are cases where psa doesn't increase as much as you'd think.  The doctor should know roughly how large the lesion is, mine was said to be 13mm which isn't large but is getting that way, it isn't small.  I'd imagine yours is about 5mm but that's pure guesswork and if you have an enlarged prostate it makes it relatively smaller.


From how I feel now I think I'd be going for AS in your shoes.  But puttnig it into perspective how long do you think you're putting off the inevitable and are you able to have a less aggressive treatment now, e.g. Brachytherapy, than if you wait.


All the best
Peter

User
Posted 05 Jun 2023 at 15:27
Thanks for your perspective MGOR, as you rightly say it’s different for everyone in this position. Age, fitness, family commitments etc.
Due to my advancing years and other medical problems and the fact that I’m my wife’s carer, it now feels that my options may be a lot different to others who are young and fit.
I hope your onward journey is smooth and worry free
User
Posted 05 Jun 2023 at 20:35
Hi David,

As Cheshire Chris said, you're probably in possession of (or be able to ask for) a bit more information than you've posted which might help make up your mind.

But on the face of it, given your age and circumstances and presuming there was only a small amount of biopsy cores positive combined with the low PSA and Gleason score, there's definitely a good argument for active surveillance I would say.

Bear in mind though that staying on active surveillance should involve regular PSA tests (every 6 months) and MRI scans (every year). If your PSA starts to rise steadily and/or the scans change, then you'll need to have further biopsies.

The tool/website linked below, is based on the findings of a large scale clinical study - it's obviously not definitive but I found it useful. It gives an indication of the difference in outcomes/survival rates between choosing to go down the active surveillance (conservative) route vs the radical intervention route. I think if you enter your numbers, the difference in outcomes for your staging will be very, very marginal.

https://prostate.predict.nhs.uk/tool
User
Posted 05 Jun 2023 at 22:10
Thanks for that Big Stan. I have very little information than that I have posted. My cancer is PIRADS4 Peripheral zone.
My cancer diagnosis was given to me by telephone. Came as a shock, I understand that the phone call was the quickest way to notify me but knocked me for six.
I need to ask more questions, as at the moment I’m not aware of the full picture.
Thank you for the link
User
Posted 05 Jun 2023 at 23:13
It's a tough decision David, but a PC diagnosis has given many of us the same dilemma - what might the future bring with the various options?

All the standard treatments apparently give about the same success rate in eliminating the cancer, but differ in the likelihood of short-term and long-term side effects (which anyway vary between individuals and you have no way of knowing what they will be for you). Most likely opting for AS will just delay the treatment decision for an unknown period, but with your caring responsibilities that might be the best as long as your psychology can carry the knowledge you have a cancer that could progress.

And in some ways, if you do wait until PSA rises the treatment decision may get easier. Surgery leaves you very dependent on others' support in the short term and recovery times favour younger ages, while radiotherapy is less traumatic short term (though not to be under-estimated, it drains you of energy) and your perspective on long term side effects may change if you don't need the procedure until you are already in your late seventies.
User
Posted 06 Jun 2023 at 09:22
Thanks J-B for your perspective. Given my age, co morbidities and caring responsibilities I feel as though I’m just delaying the inevitable, and as you say, the decision on future treatment will become more clear.
User
Posted 12 Jun 2023 at 07:33

Sorry to hear you are having to endure the same journey. Many of us have. It’s good to be thinking about options though I wouldn’t spend too much time deliberating this and given you have some type four cells involved or detected urgency is prudent. it’s quite common for prostate cancer cells to be detected in the anterior of the prostate - talking to my surgeon, that’s where they are most commonly found in the initial stages, and were in my case.


With any of the stages of cancer, type three, four or five… they have all fully exhibit the characteristics of cancer cells and are fully capable of migrating to distant site.  With type three probability is low. At the other end of the spectrum, a type five is high probability.But in all cases there is risk…..


in my case, I was told I had 3+3 cancer in situ and not to panic and consider active surveillance as an option. I scoped this out personally with friends I happen to know who work in this field. Plus also did my own research and fairly early on it became evident that surgery, given my age (52), would be my best option to reduce the risk of potential spread at some point in time in the future.


Thus far 3.5yrs post op I’ve had a good outcome and so far I’m cancer free. If I have to have treatment in the future. Radiotherapy will be an option as well as other treatment options on the table. So yes, surgery is quite radical hence the name but it did the trick in my case and several other people I know that I’ve been down this route, they also have no regrets. Please feel free to contact me if you need any further information. Best of luck Simon 

Edited by member 12 Jun 2023 at 07:46  | Reason: Not specified

User
Posted 12 Jun 2023 at 08:58
Thanks for your thoughts, I appreciate your input. I believe that I would have made the same decision based on your age. At 74 and with several serious co morbidities I believe my options are limited, also as a carer I have to think of the decision carefully.
Good to hear your journey is going well but it’s work in progress.
 
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