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User
Posted 13 Mar 2023 at 10:54

So the news I had been dreading arrived.

MRI - no abnormalities found

Gleason 3 + 4  

7  of 20 samples

All contained in the capsule, right side only

Given 4 options:

1. Active surveillance 

2. Brachytherapy 

3. RT

4. RP

It feels an impossible decision to make. Urologist said as I was relatively young and otherwise fit many men choose RP.  My first thought was AS as it is slow growing and it could years before anything needed to be done, but maybe that’s wishful thinking. 
It’s one of those situation where I almost want someone to make the decision for me.

I suppose meeting with the surgeon and oncologist will make me better informed.

Tom

User
Posted 20 Mar 2023 at 14:07

My diagnosis was very similar to yours- but only 3 cores and all less than 5 % . I was on AS for around 18 months but went for surgery when it was restaged at T2. I didn't regret delaying and feel very lucky with the surgery outcomes. Side effects have been minimal. Good luck.

User
Posted 28 Aug 2023 at 18:39

Hi Tom My journey may be of interest. I had prostate HIFU left side ablation last year on Gleason 3+4 at UCLH. Cancer returned in the ablated field soon afterwards and also on the right so was now bilateral, Gleason 3+4 risk group T2C Intermediate.  UCLH advised whole gland treatment required and gave me a choice of salvage prostate removal or RT.  I did not want the RT as 18 months of aggressive hormone treatment would tie me to numerous hospital visits, with many side effects like weakness incontinence etc. After research i am very disappointed in lack of counselling prior to HIFU. This procedure is not approved in US or EU. One NY Study describes recurrence as 35-42% but i was advised 15% chance of failure. The same study referred to the effect on the anatomy of HIFU treatment as "unknown". I dug deeper. In 2018 a study by UCLH suggested cancer recurrence after HIFU in the treated field may be due to fibrosis of tissue leading to reduced blood flow encouraging a more aggressive form of cancer!  I wish i did the research before the HIFU. After the cancer returned bilaterally UCLH advised how technically difficult salvage prostatectomy would because of the nerves and rectum being fused to the prostate gland during HIFU. They insisted all nerves would have to be removed. So total loss of erectile function. This turned out to be the line given out in the NHS to cancer patients but it is due to the increased cost and resources required of a nerve spare op. Ive now been forced to go private with the prof. who also operates at guys and guildford who has now performed a successful salvage prostatectomy with 100% nerves intact and has done thousands of robotic prostatectomies with 'intraoperative frozen section nerve spare'. They only cut out the nerves they need to after doing the histology while your asleep. Its c.£22k.  It is simply unacceptable UCLH do not Counsel cancer patients about the range of research over failure risks, and the consequences if you want to retain sexual function if HIFU failure happens before you decide on it. I am relieved to have the prostate out and relieved to retain the nerves supporting sexual function. I hope this experience can give some perspective to others.

User
Posted 13 Mar 2023 at 11:32

Hi Tom,

It is difficult to see straight when you are first told you have prostate cancer and are offered a lot of choices.Read  up as much as you can about your choices and a like i did ask a few questions from the members on here.

I did not see your age and that can also come into the final decision.

I can give you my experience and reasons for my choice.

I needed a private medical to renew my 7.5 ton driving licence at the age of 70 and had no symptoms at the time, but by luck my doctor picked up microscopic blood in my urine and sent me for more tests as PSA was 2.19 

 The biopsy found 5 out of 20 samples positive but contained within the prostate with Gleason 3+4=7. I was given the choice of Robotic  surgery first and i asked to speak to another surgeon to see if Brachytherapy was also possible . 

 

 

I only reason i went for Brachytherapy was i felt there might be less side affects for me and a good friend of mine

 

had had the same operation a couple of years earlier and was doing well.If you click on my Avatar you can see my journey so far.I had my operation in 2016 and my PSA dropped every year and is know 0.04 and i was signed off by my specialist in 2020.Please ask any question if it helps Good Luck.

John.

Edited by member 13 Mar 2023 at 11:36  | Reason: Not specified

User
Posted 13 Mar 2023 at 16:09

July 2021 had a 26.9 PSA! Prostate was 128 ml - so 3 or 4 times bigger than normal. This accounted for some of the high PSA but not all. Gleason 3+4 and all clear scans of other organs and bones.

NHS consultant said 50/50 chance it may yet have escaped the capsule so it was my call. I was told you could have RP then salvage but once you go down the radiotherapy route a RP is a no-go. Interestingly, she put my details into a life expectancy app the NHS use. At 63 I would be expected to live until 82 with NO TREATMENT AT ALL. Quality of life was not explained though. Having lived this long already I would expect to live to 88 or more without the diagnosis.

The size of my prostate was causing urinary problems so I decided to get rid of it and flip the 50/50 coin. Coming out of Lockdown and millions on the waiting list I dipped into my parent's legacy and shelled out close to £15k on a private operation. One of the top ten surgeons in the UK was only 30 minutes away so this helped make up my mind. Prostate out late October and biopsies on several lymph glands came back negative - as did the outer capsule.

17 months on I have had two "undetectable" PSA tests. One with the consultant (cost around £300 and two visits to hospital) and the most recent through my local Nuffield hospital - £58! My GP refused a uPSA test on cost! Really?

On tadalafil for maintenance. Erection takes ages but really kicks in at "the point of no return" and stays for several minutes after orgasm - so work that one out. I consider myself one of the lucky ones. Life goes on.

 

Edited by member 13 Mar 2023 at 16:10  | Reason: spelling

User
Posted 13 Mar 2023 at 17:24

Hi Tom,

A 27ml prostate isn't that big.

I wonder if you know the size of the lesion from the MRI or if it's near the edge.   I was told it was about 13mm and near the edge, possibly a T3a.  Based on that I was keen to get it out.  Post op my Gleason was increased to 4+4 but it was contained in the prostate.  That's one plus for the op in that the lab can look at what is actually there.

For RT there is the benefit of it being able to treat a wider area around the prostate or where-ever they want to radiate.  Sometimes around the area can be beneficial although you may never know unless a scan detects something beforehand.

Any one of the options you've been offered could be good.  I wasn't offered Brachytherapy.

If I'd been treated with RT for a 4+3 it might not have been good enough as I was actually 4+4.

Even so I've never been totally certain it was the right choice but I'm not complaining, you have to go with it and there is some logic.  Once you make up your mind and once you get a date for treatment it's a big relief and you shouldn't look back.  All the best Peter

 

User
Posted 13 Mar 2023 at 20:32

Sorry it was my fault I think I mixed your MRI with another, unless you're gaslighting me, which I'm sure you're not.   I knew I'd get to use the term 'gaslighting' one day.

A psa that went from 10 to 8.6 perhaps is a sign there's inflammation.  It can fluctuate but that's a lot if they were tested in the same place.   I had two tests a couple of weeks apart that were only 0.01 different, before my op.

It's interesting that the MRI found nothing but the biopsy had 7/20 on one side.  My biopsy found 1/12 although it was done before the MRI.  7/20 in one half seems a lot as presumably one half is 10/20. Yet the MRI found nothing.

User
Posted 13 Mar 2023 at 20:47

Originally Posted by: Online Community Member

Yes I meant to say my prostate is NOT enlarged, sorry for any confusion. DRE’s have all said over the years that it was enlarged, so you draw some conclusions from that.

My MRI showed no lesions. 

Tom

The DRE tends to be more reliable than the MRI when it comes to prostate volume - if a succession of doctors have felt it and commented that it is big while the MRI can only estimate its volume based on the images, I think I would wonder how the doctors could feel something incorrectly. One possibility is that you have a lot of fatty tissue around the prostate - something to clarify when you see the urologist, I think?

If you were my dad or brother I would be saying to rule out AS - 7 positive cores out of 20 is more significant for you than it would have been if the MRI had spotted a suspicious area and all 20 cores had been taken from that one area. Also, until recently, AS was only considered for G3+3 so again, you need a clear explanation of why the MDT thinks it might be a suitable option in your case ... they will presumably have a reason for their thinking. 

Brachytherapy would have been our first choice but at the time my husband wasn't considered suitable. Things will hopefully be much clearer once you have spoken to the different specialists. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Mar 2023 at 02:13

Coincidentally, on another forum I am on which is not health related, when the subject came up, a member mentioned his job was involved in assessing DREs and instructing GPs how to do this because many of them were very poor at doing it. Sometimes this can indicate abnormalities and give an indication of its size. But a good MRI enables measurements to be made which enables the volume of the the Prostate to be calculated quite closely and a figure given. I don't follow how feeling part of the Prostate through the Rectum can enable such a specific figure to be given and never seen such a figure reported just from DRE.

Where there is no treatment recommendation by Professionals over other options, which happens quite frequently, it is left to the patient to decide which to plump for. A case can be made for and against each form of treatment relative to other options and it is helpful to understand what these are. Some men for example are happy to have their situation monitored whilst at the other end of the spectrum some men feel that can't live with a cancer growing in them and want the Prostate removed regardless of potential risks and side effects. Some men are very worried about having RT in any form or don't want having to have a number of attendances and potentially in most cases complementary HT, quite likely for an extended period. Then there are the potential side effects associated with the various treatments that can vary in duration and extent. So you need to read up on treatments and side effects and to help you come to a determination I suggest you learn as much as possible from your Consultants about the extent and whereabouts of your individual cancer. A good place to help you with the basic facts is the 'Tool Kit' but how risk averse you and how you judge pros and cons of not only the actual treatment but also how side effects might affect you. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 14 Mar 2023 at 02:15  | Reason: To highlight link

Barry
User
Posted 14 Mar 2023 at 12:56
Hello Tom,

I had LDR Brachytherapy in November and I have no regrets. Click on my icon or search for Davekc10 posts. There are a set of criteria which have to be met. A good urine flow test result, a PSA which I always thought had to be below10 ( mine was 8.6 ) although I have read below 20 may be acceptable and a prostate less than 50cc ( mine was 30cc )

The procedure seemed to work for me but every man is different.

It is very important to do your research to see what “feels” right for you.

All procedures have their pros and cons.

There is no magic wand!

Rgds

Dave

User
Posted 14 Mar 2023 at 13:53
'I had a long career in risk assessment and should probably bring those skills to bear on this latest challenge.'

- yep, that is bang on the money, Tom!

User
Posted 19 Mar 2023 at 01:58

Tom,

Clearly the more indivialised expert opinion you can obtain about your situation, the better you are equipped to make your decision. This would be by discussion with your consultant, who through experience, examination of your tests and scans, can give a better assessment of what the figurers mean in your case and whether AS would be a good option for a time at least.  On the other hand, would it be safer, and advisable, if pre-emptive, to opt for more radical treatment before long?

Edited by member 19 Mar 2023 at 02:10  | Reason: Not specified

Barry
User
Posted 19 Mar 2023 at 02:10

Originally Posted by: Online Community Member
I now have my staging, which is T1c N0 M0 so I am wondering whether this has some effect on me being offered AS

 

Why are you thinking that it might affect you being offered AS? 

 

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Mar 2023 at 06:40
Personally any 4 in a biopsy would be enough for me to skip AS and get it treated..
User
Posted 19 Mar 2023 at 08:47
The fact is that you are going to need radical treatment at some point, so it does boil down to the question of whether to get it over with now and get on with the rest of your life, or whether you're happy to put it off to the future. Personally I fall into the "get it over with and get on with life" camp, but it's very much a personal decision. Your cancer is at an early stage, so any treatment has a very, very high chance of being completely successful.

All the best,

Chris

User
Posted 19 Mar 2023 at 16:23
I think when the MDT considers diagnostics and states a view about suitable options, they take many factors into account that we don't know here on the forum. For AS, T1 is fairly critical and members here are correct that, traditionally, any elements of G4 would rule AS out. However, it may be that you have a very small tumour well contained and with a very low % at G4. Your MDT knows your specific data - they wouldn't have suggested AS might be an option if your cores had all been 52% G3 and 48% G4
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Mar 2023 at 22:59

Hi Tom

I recently had a similar diagnosis  (3+4) and am wrestling with the same issues.  I was diagnosed in Jan and still weighing up options but don't want to wait too long, for what it's worth I have somewhat ruled out AS (due to age concerns - 49) but equally have moved away from thinking about a surgery option.  Still investigating, have recently seen that there is an electrolysis option ( I think this is nanoknife) which I've read is also available in some other countries (but I need to research).

 

Best regards,

Edited by member 24 Mar 2023 at 23:07  | Reason: error

User
Posted 24 Mar 2023 at 23:51
Nanoknife is going to present you with the same dilemma as HIFU, Fox - it is a focal treatment and may need to be repeated at some point.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Mar 2023 at 23:55

Yes understood, however it doesn't seem that surgery is a 100% guarantee in any case but is likely to carry an enormously higher risk profile for side effects.

User
Posted 25 Mar 2023 at 10:36
Yes, a rock and a hard place. About 30% of men need salvage treatment at some point after RP.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Mar 2023 at 14:14

Hi Fox 

I completely agree about surgery, although I am meeting with a surgeon in a week or so, but that is really just to ask a few questions and see whether it changes my mind (doubt it will). I am currently leaning toward Brachy or RT rather than AS. I recently discovered that a friend had Brachy 6 years ago and he has been very pleased with the decision. The higher risk of nasty side effects and possible salvage treatment, not to mention the long recovery time following RP make it for me an unattractive option. 

I would like to get on with it too, but we have a big holiday planned for July/Aug and so am thinking to start treatment after that. 

 

Edited by member 26 Mar 2023 at 14:17  | Reason: Not specified

User
Posted 22 Apr 2023 at 16:23

Hi Tom,

It is very difficult to decide on what treatment path to take when you are offered more than one, I looked hard at Robotic removal and Brachytherpy in 2016 when i was diagnosed  with PSA 2.19 Gleason 3+4=7 and for me i felt brachytherapy was a better choice for me with a possibility of less side affects.

Don't worry about the procedure as it is very quick with only a couple of hours in the theatre and great after care and release as soon as you can pass water I filled many containers over night that had to be checked with a Geiger counter to check for lost seeds.

All i needed was a cup of tea some food and a good nights sleep.I hope it goes well for you and please ask questions on anything.As you may or not know i am 6 years 7 months on and signed off by Specialist with PSA 0.04.

Regards John.

User
Posted 22 Apr 2023 at 16:27
Tom, you are in a similar situation I was. I had Brachytherapy five months ago ( no hormone treatment ) and personally I have no regrets. I am approaching my second I-125 “half life”. I am no longer on Tamsulosin and I can go about two hours without a pit stop, my bowel function is normal.

I still get a little bit tired and I am trying to build up my stamina by attending a NHS/ Council weekly HARP ( Healthy and Active Rehabilitation Programme ) course at my local sports centre.

Best of luck with your procedure.

Rgds

Dave.

User
Posted 23 Apr 2023 at 11:01

Originally Posted by: Online Community Member

...It seems to be the less popular solution on here, or maybe...

In general a forum attracts people with ongoing problems. Maybe people who have brachy have no problems and get on with their life.

Dave

User
Posted 23 Apr 2023 at 12:16
If my husband had been suitable, he would have gone with brachy in a heartbeat. Unfortunately it was ruled out for him but we have two close friends who have had it since and been very happy with their choice.

If you want to find more success stories on here, look up Johsan in the members list.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Apr 2023 at 12:58
also it's fair to say that many more men have Prostatectomy and EBRT than Brachytherapy Low or High Dose.
Barry
User
Posted 24 Aug 2023 at 14:47

Well I am one week on from the Brachy procedure. I was a little sore for a few days but apart from feeling a bit constipated and a little more tired than I would normally be all is pretty much as it was before.

On the big day I arrived at the hospital at 8.15am and was second on the list.  As soon as I woke up afterwards I had a CT scan to check all was where it should be and then thankfully the catheter was removed as I urgently needed to pee. I nearly filled the nurses jug (she was getting worried). I am not convinced the catheter could keep up with the demand! Anyway she was pleased all was working so well and after a quick sarnie I was discharged at 1.30pm.

For the first four nights I was up twice a night to pee (this is more than normal for me), but for the last two nights I have slept through without any need for a trip to the bathroom.

I was very impressed by the Stokes Urology Centre at the Royal Surrey Hospital. I have been in a few private hospitals over my working years for various, mostly minor, things and this was as good, if not better, than any of them.

Anyway I am very pleased I took the Brachy option and the quick recovery time means I am looking forward to getting back out onto the golf course soon, hopefully next week.

Tom

PS - the cat though is extremely unhappy at having his lap privileges withdrawn.

PPS - You might be surprised at how long it took me to get the procedure done, but this was entirely at my request as we had a big holiday planned and didn't want anything to get in the way of that. The hospital said that the procedure could wait that long because of my circs.  

 

Edited by member 24 Aug 2023 at 15:02  | Reason: Not specified

User
Posted 24 Aug 2023 at 20:56
Well done Tom!

It's certainly an easy enough procedure and I've only suffered from very mild side effects - the worst one probably being more tiredness than usual. I'm now just over 3 months post procedure and still try and slink off for a nap if no-ones looking!

User
Posted 24 Aug 2023 at 23:05
I too am leaning towards the Brachy choice once I'm ready to make the decision.

Had my first consultant appointment yesterday after learning I had PC a few weeks ago (T2 N0 M0 Gleason 3+4).

He gave me the AS, RP, RT and Brachy choices.

I have quite serious artery narrowing in the heart, and probably on the verge of the angina stage.

His opinion was that this significantly increases my risk in operations because of the anaesthetics. Whilst he wasn't saying RP was the wrong choice, the risk might not make it the obvious choice (if there is such a decision).

For now I've gone on AS whilst I digest all this and try to form some preference.

I suppose for me, the calcification could get me well before PC does. Quite a big dilemma.

Found this quite an interesting read:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10252630/

User
Posted 25 Aug 2023 at 11:03
Hi ohwow

Thanks for the response. I am sorry to hear that you have an extra complication to what is already a difficult decision to make. I think it is possible to have the Brachytherapy procedure under local anaesthetic.

Good luck with the decision, if you have any questions that I can help with regarding Brachy please let me know.

Also thanks for the link, that is an interesting article.

All the best

Tom

User
Posted 25 Aug 2023 at 11:14
Hi Tom, I am going for my first six month review ( nine months after procedure) on Monday. Three months after my brachytherapy my PSA fell from 8.6 to 0.8. The doctor said this was very unusual as that usually takes about nine months.

I still get very tired however I am beginning to think that might be due to something else ( apart from being bone idle!🤔 ). I will try and organise a generic blood test after my review.

All the best

Dave

User
Posted 30 Aug 2023 at 10:02

Yes it is clear that post RT the scar tissue makes RP much more challenging, but not impossible. Each to their own but for me there is nothing that is not "logical" about assessing all the possible outcomes when you make an important decision. If I had been told that there was no possibility of successful salvage treatment for the 5-10% of people for whom Brachy does not eliminate PCa then it may have affected my decision. As with not pushing anyone down any treatment route I feel it's also important to support all sufferers of this nasty disease in the way they choose to analyse potential outcomes. 

Edited by member 30 Aug 2023 at 10:04  | Reason: Not specified

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User
Posted 13 Mar 2023 at 11:32

Hi Tom,

It is difficult to see straight when you are first told you have prostate cancer and are offered a lot of choices.Read  up as much as you can about your choices and a like i did ask a few questions from the members on here.

I did not see your age and that can also come into the final decision.

I can give you my experience and reasons for my choice.

I needed a private medical to renew my 7.5 ton driving licence at the age of 70 and had no symptoms at the time, but by luck my doctor picked up microscopic blood in my urine and sent me for more tests as PSA was 2.19 

 The biopsy found 5 out of 20 samples positive but contained within the prostate with Gleason 3+4=7. I was given the choice of Robotic  surgery first and i asked to speak to another surgeon to see if Brachytherapy was also possible . 

 

 

I only reason i went for Brachytherapy was i felt there might be less side affects for me and a good friend of mine

 

had had the same operation a couple of years earlier and was doing well.If you click on my Avatar you can see my journey so far.I had my operation in 2016 and my PSA dropped every year and is know 0.04 and i was signed off by my specialist in 2020.Please ask any question if it helps Good Luck.

John.

Edited by member 13 Mar 2023 at 11:36  | Reason: Not specified

User
Posted 13 Mar 2023 at 13:38

Hi young men and RP. You will hear a lot that the clinicians lean towards that option. Read my profile, I was similar staging and had all options on the table except AS, although they did advise I could wait a year. 

Talk to the surgeon, oncologist and uro-oncology nurse who should have been assigned. Speak to the specialist nurses on here all will give you som pointers, particularly the Clinical nurses.

User
Posted 13 Mar 2023 at 16:09

July 2021 had a 26.9 PSA! Prostate was 128 ml - so 3 or 4 times bigger than normal. This accounted for some of the high PSA but not all. Gleason 3+4 and all clear scans of other organs and bones.

NHS consultant said 50/50 chance it may yet have escaped the capsule so it was my call. I was told you could have RP then salvage but once you go down the radiotherapy route a RP is a no-go. Interestingly, she put my details into a life expectancy app the NHS use. At 63 I would be expected to live until 82 with NO TREATMENT AT ALL. Quality of life was not explained though. Having lived this long already I would expect to live to 88 or more without the diagnosis.

The size of my prostate was causing urinary problems so I decided to get rid of it and flip the 50/50 coin. Coming out of Lockdown and millions on the waiting list I dipped into my parent's legacy and shelled out close to £15k on a private operation. One of the top ten surgeons in the UK was only 30 minutes away so this helped make up my mind. Prostate out late October and biopsies on several lymph glands came back negative - as did the outer capsule.

17 months on I have had two "undetectable" PSA tests. One with the consultant (cost around £300 and two visits to hospital) and the most recent through my local Nuffield hospital - £58! My GP refused a uPSA test on cost! Really?

On tadalafil for maintenance. Erection takes ages but really kicks in at "the point of no return" and stays for several minutes after orgasm - so work that one out. I consider myself one of the lucky ones. Life goes on.

 

Edited by member 13 Mar 2023 at 16:10  | Reason: spelling

User
Posted 13 Mar 2023 at 16:51

Thank you all for your quick and thought provoking replies. 

I should have said that I am 62 and had my first PSA test for 5 years in mid Feb which was 10 and a second one a week later which was 8.4, and so started this process.

MRI showed that contrary to my GP’s initial diagnosis I do not have an enlarged prostate. It’s 27ml.

Thanks again, it is very much appreciated 

Tom 

Edited by member 13 Mar 2023 at 16:56  | Reason: Not specified

User
Posted 13 Mar 2023 at 17:24

Hi Tom,

A 27ml prostate isn't that big.

I wonder if you know the size of the lesion from the MRI or if it's near the edge.   I was told it was about 13mm and near the edge, possibly a T3a.  Based on that I was keen to get it out.  Post op my Gleason was increased to 4+4 but it was contained in the prostate.  That's one plus for the op in that the lab can look at what is actually there.

For RT there is the benefit of it being able to treat a wider area around the prostate or where-ever they want to radiate.  Sometimes around the area can be beneficial although you may never know unless a scan detects something beforehand.

Any one of the options you've been offered could be good.  I wasn't offered Brachytherapy.

If I'd been treated with RT for a 4+3 it might not have been good enough as I was actually 4+4.

Even so I've never been totally certain it was the right choice but I'm not complaining, you have to go with it and there is some logic.  Once you make up your mind and once you get a date for treatment it's a big relief and you shouldn't look back.  All the best Peter

 

User
Posted 13 Mar 2023 at 18:06

Yes I meant to say my prostate is NOT enlarged, sorry for any confusion. DRE’s have all said over the years that it was enlarged, so you draw some conclusions from that.

My MRI showed no lesions. 

Tom

User
Posted 13 Mar 2023 at 20:32

Sorry it was my fault I think I mixed your MRI with another, unless you're gaslighting me, which I'm sure you're not.   I knew I'd get to use the term 'gaslighting' one day.

A psa that went from 10 to 8.6 perhaps is a sign there's inflammation.  It can fluctuate but that's a lot if they were tested in the same place.   I had two tests a couple of weeks apart that were only 0.01 different, before my op.

It's interesting that the MRI found nothing but the biopsy had 7/20 on one side.  My biopsy found 1/12 although it was done before the MRI.  7/20 in one half seems a lot as presumably one half is 10/20. Yet the MRI found nothing.

User
Posted 13 Mar 2023 at 20:47

Originally Posted by: Online Community Member

Yes I meant to say my prostate is NOT enlarged, sorry for any confusion. DRE’s have all said over the years that it was enlarged, so you draw some conclusions from that.

My MRI showed no lesions. 

Tom

The DRE tends to be more reliable than the MRI when it comes to prostate volume - if a succession of doctors have felt it and commented that it is big while the MRI can only estimate its volume based on the images, I think I would wonder how the doctors could feel something incorrectly. One possibility is that you have a lot of fatty tissue around the prostate - something to clarify when you see the urologist, I think?

If you were my dad or brother I would be saying to rule out AS - 7 positive cores out of 20 is more significant for you than it would have been if the MRI had spotted a suspicious area and all 20 cores had been taken from that one area. Also, until recently, AS was only considered for G3+3 so again, you need a clear explanation of why the MDT thinks it might be a suitable option in your case ... they will presumably have a reason for their thinking. 

Brachytherapy would have been our first choice but at the time my husband wasn't considered suitable. Things will hopefully be much clearer once you have spoken to the different specialists. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Mar 2023 at 02:13

Coincidentally, on another forum I am on which is not health related, when the subject came up, a member mentioned his job was involved in assessing DREs and instructing GPs how to do this because many of them were very poor at doing it. Sometimes this can indicate abnormalities and give an indication of its size. But a good MRI enables measurements to be made which enables the volume of the the Prostate to be calculated quite closely and a figure given. I don't follow how feeling part of the Prostate through the Rectum can enable such a specific figure to be given and never seen such a figure reported just from DRE.

Where there is no treatment recommendation by Professionals over other options, which happens quite frequently, it is left to the patient to decide which to plump for. A case can be made for and against each form of treatment relative to other options and it is helpful to understand what these are. Some men for example are happy to have their situation monitored whilst at the other end of the spectrum some men feel that can't live with a cancer growing in them and want the Prostate removed regardless of potential risks and side effects. Some men are very worried about having RT in any form or don't want having to have a number of attendances and potentially in most cases complementary HT, quite likely for an extended period. Then there are the potential side effects associated with the various treatments that can vary in duration and extent. So you need to read up on treatments and side effects and to help you come to a determination I suggest you learn as much as possible from your Consultants about the extent and whereabouts of your individual cancer. A good place to help you with the basic facts is the 'Tool Kit' but how risk averse you and how you judge pros and cons of not only the actual treatment but also how side effects might affect you. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 14 Mar 2023 at 02:15  | Reason: To highlight link

Barry
User
Posted 14 Mar 2023 at 09:54

Thank you, I am inclined to believe scanning technology rather than a GP’s subjective finger which can only feel portion of the prostate and guess it’s overall size.

So much of the choice seems to depend on each persons psychological reaction to the diagnosis. I don’t feel alarmed at the thought of not whipping it out as soon as possible. For me I think slowly is the best way for me to go. At least for the moment, but of course that may change. I had a long career in risk assessment and should probably bring those skills to bear on this latest challenge.

Thank you all again for your support and advice. It is all much appreciated

Tom

Edited by member 14 Mar 2023 at 14:51  | Reason: Not specified

User
Posted 14 Mar 2023 at 12:56
Hello Tom,

I had LDR Brachytherapy in November and I have no regrets. Click on my icon or search for Davekc10 posts. There are a set of criteria which have to be met. A good urine flow test result, a PSA which I always thought had to be below10 ( mine was 8.6 ) although I have read below 20 may be acceptable and a prostate less than 50cc ( mine was 30cc )

The procedure seemed to work for me but every man is different.

It is very important to do your research to see what “feels” right for you.

All procedures have their pros and cons.

There is no magic wand!

Rgds

Dave

User
Posted 14 Mar 2023 at 13:53
'I had a long career in risk assessment and should probably bring those skills to bear on this latest challenge.'

- yep, that is bang on the money, Tom!

User
Posted 18 Mar 2023 at 09:49

Just back from a few days away in the sun and now have the consultants letter following my meeting with him. A little disappointing that it doesn’t completely match our discussion (I recorded it) but anyway….
I now have my staging, which is T1c N0 M0 so I am wondering whether this has some effect on me being offered AS even though I have a Gleason of 3+4?

PSA was 8.3.

I need to try and understand whether AS is a realistic option for me so any thoughts would be very gratefully received. 

Thanks

Tom

Edited by member 18 Mar 2023 at 12:19  | Reason: Not specified

User
Posted 19 Mar 2023 at 01:58

Tom,

Clearly the more indivialised expert opinion you can obtain about your situation, the better you are equipped to make your decision. This would be by discussion with your consultant, who through experience, examination of your tests and scans, can give a better assessment of what the figurers mean in your case and whether AS would be a good option for a time at least.  On the other hand, would it be safer, and advisable, if pre-emptive, to opt for more radical treatment before long?

Edited by member 19 Mar 2023 at 02:10  | Reason: Not specified

Barry
User
Posted 19 Mar 2023 at 02:10

Originally Posted by: Online Community Member
I now have my staging, which is T1c N0 M0 so I am wondering whether this has some effect on me being offered AS

 

Why are you thinking that it might affect you being offered AS? 

 

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Mar 2023 at 06:40
Personally any 4 in a biopsy would be enough for me to skip AS and get it treated..
User
Posted 19 Mar 2023 at 08:47
The fact is that you are going to need radical treatment at some point, so it does boil down to the question of whether to get it over with now and get on with the rest of your life, or whether you're happy to put it off to the future. Personally I fall into the "get it over with and get on with life" camp, but it's very much a personal decision. Your cancer is at an early stage, so any treatment has a very, very high chance of being completely successful.

All the best,

Chris

User
Posted 19 Mar 2023 at 11:37

On here and elsewhere people have suggested that a 3+4 Gleason, with 7 positive cores out of 21, would normally rule out AS, however my consultant said that AS was suitable for me. 

I am new to all this and so probably asked a stupid question as I don't know what the stages really mean, and I suppose I was wondering if it modified the advice based on Gleason scores. Doesn't sound like it does. 

My general view is to use surgery as a last resort and therefore eventual radiotherapy/Brachy are my current preferences. As my Consultant said avoiding the side effects of these for a period, maybe years, is something I might want to consider. It's a risk balancing exercise. 

Thanks anyway

Tom

 

Edited by member 19 Mar 2023 at 11:43  | Reason: Not specified

User
Posted 19 Mar 2023 at 13:46

Staging gives an indication of how far the cancer has spread and the figures you show it is confined to the Prostate. Believing this to be the case would be the reason why your Consultant would suggest you had time to be on AS if you so wish. However, the Gleason 4 element is of concern as it means some of the cancer has mutated to a higher grade so should be a factor to be taken into account. Unfortunately, the diagnostic tools available are not 100% reliable so that in some cases when Prostates are sliced in the lab it is found that the original Gleason score and or staging was wrongly assessed/staged when the Prostate was still in the patients, notwithstanding the best opinion of the MDT. So this unquantifiable factor may be considered of greater or lesser importance to a patient when when he considers his options.

Edited by member 19 Mar 2023 at 13:59  | Reason: spelling

Barry
User
Posted 19 Mar 2023 at 14:38

Many thanks Barry, I very much appreciate your help. I will discuss further when I can see the oncologist etc and try to get a better idea of the risks.

Tom

User
Posted 19 Mar 2023 at 16:23
I think when the MDT considers diagnostics and states a view about suitable options, they take many factors into account that we don't know here on the forum. For AS, T1 is fairly critical and members here are correct that, traditionally, any elements of G4 would rule AS out. However, it may be that you have a very small tumour well contained and with a very low % at G4. Your MDT knows your specific data - they wouldn't have suggested AS might be an option if your cores had all been 52% G3 and 48% G4
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Mar 2023 at 14:07

My diagnosis was very similar to yours- but only 3 cores and all less than 5 % . I was on AS for around 18 months but went for surgery when it was restaged at T2. I didn't regret delaying and feel very lucky with the surgery outcomes. Side effects have been minimal. Good luck.

User
Posted 24 Mar 2023 at 22:59

Hi Tom

I recently had a similar diagnosis  (3+4) and am wrestling with the same issues.  I was diagnosed in Jan and still weighing up options but don't want to wait too long, for what it's worth I have somewhat ruled out AS (due to age concerns - 49) but equally have moved away from thinking about a surgery option.  Still investigating, have recently seen that there is an electrolysis option ( I think this is nanoknife) which I've read is also available in some other countries (but I need to research).

 

Best regards,

Edited by member 24 Mar 2023 at 23:07  | Reason: error

User
Posted 24 Mar 2023 at 23:51
Nanoknife is going to present you with the same dilemma as HIFU, Fox - it is a focal treatment and may need to be repeated at some point.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Mar 2023 at 23:55

Yes understood, however it doesn't seem that surgery is a 100% guarantee in any case but is likely to carry an enormously higher risk profile for side effects.

User
Posted 25 Mar 2023 at 10:36
Yes, a rock and a hard place. About 30% of men need salvage treatment at some point after RP.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Mar 2023 at 14:14

Hi Fox 

I completely agree about surgery, although I am meeting with a surgeon in a week or so, but that is really just to ask a few questions and see whether it changes my mind (doubt it will). I am currently leaning toward Brachy or RT rather than AS. I recently discovered that a friend had Brachy 6 years ago and he has been very pleased with the decision. The higher risk of nasty side effects and possible salvage treatment, not to mention the long recovery time following RP make it for me an unattractive option. 

I would like to get on with it too, but we have a big holiday planned for July/Aug and so am thinking to start treatment after that. 

 

Edited by member 26 Mar 2023 at 14:17  | Reason: Not specified

User
Posted 22 Apr 2023 at 15:42

It's been nearly a month since my last post. In that time I have met with an oncologist, a surgeon and a Brachy specialist. My prior experiences with the NHS have not always been positive but, hats off to the venerable institution, this time it has knocked it out of the park. 

In the meantime my staging has been increased to T2b N0 M0, from T1c. Not sure why but hey ho. 

I have decided on LDR Brachytherapy. The Urology centre I am using is one of the leaders in the field and I was very impressed. Happily I will not need any hormone treatment either (small prostate club member). 

I am booked in for the procedure in August, a week after our return from holiday. 

Tom

Edited by member 22 Apr 2023 at 15:51  | Reason: Typos

User
Posted 22 Apr 2023 at 16:23

Hi Tom,

It is very difficult to decide on what treatment path to take when you are offered more than one, I looked hard at Robotic removal and Brachytherpy in 2016 when i was diagnosed  with PSA 2.19 Gleason 3+4=7 and for me i felt brachytherapy was a better choice for me with a possibility of less side affects.

Don't worry about the procedure as it is very quick with only a couple of hours in the theatre and great after care and release as soon as you can pass water I filled many containers over night that had to be checked with a Geiger counter to check for lost seeds.

All i needed was a cup of tea some food and a good nights sleep.I hope it goes well for you and please ask questions on anything.As you may or not know i am 6 years 7 months on and signed off by Specialist with PSA 0.04.

Regards John.

User
Posted 22 Apr 2023 at 16:27
Tom, you are in a similar situation I was. I had Brachytherapy five months ago ( no hormone treatment ) and personally I have no regrets. I am approaching my second I-125 “half life”. I am no longer on Tamsulosin and I can go about two hours without a pit stop, my bowel function is normal.

I still get a little bit tired and I am trying to build up my stamina by attending a NHS/ Council weekly HARP ( Healthy and Active Rehabilitation Programme ) course at my local sports centre.

Best of luck with your procedure.

Rgds

Dave.

User
Posted 23 Apr 2023 at 10:46

Thanks John and Dave for your responses, it is reassuring to hear positive stories about Brachy. It seems to be the less popular solution on here, or maybe it's just that fewer men are suitable for it. I am worried about the frequency of pit stops, especially during the night, but I understand (hope) that this is usually a temporary problem. 

All the best

Tom

Edited by member 23 Apr 2023 at 10:47  | Reason: Not specified

User
Posted 23 Apr 2023 at 11:01

Originally Posted by: Online Community Member

...It seems to be the less popular solution on here, or maybe...

In general a forum attracts people with ongoing problems. Maybe people who have brachy have no problems and get on with their life.

Dave

User
Posted 23 Apr 2023 at 12:16
If my husband had been suitable, he would have gone with brachy in a heartbeat. Unfortunately it was ruled out for him but we have two close friends who have had it since and been very happy with their choice.

If you want to find more success stories on here, look up Johsan in the members list.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Apr 2023 at 12:58
also it's fair to say that many more men have Prostatectomy and EBRT than Brachytherapy Low or High Dose.
Barry
User
Posted 24 Aug 2023 at 14:47

Well I am one week on from the Brachy procedure. I was a little sore for a few days but apart from feeling a bit constipated and a little more tired than I would normally be all is pretty much as it was before.

On the big day I arrived at the hospital at 8.15am and was second on the list.  As soon as I woke up afterwards I had a CT scan to check all was where it should be and then thankfully the catheter was removed as I urgently needed to pee. I nearly filled the nurses jug (she was getting worried). I am not convinced the catheter could keep up with the demand! Anyway she was pleased all was working so well and after a quick sarnie I was discharged at 1.30pm.

For the first four nights I was up twice a night to pee (this is more than normal for me), but for the last two nights I have slept through without any need for a trip to the bathroom.

I was very impressed by the Stokes Urology Centre at the Royal Surrey Hospital. I have been in a few private hospitals over my working years for various, mostly minor, things and this was as good, if not better, than any of them.

Anyway I am very pleased I took the Brachy option and the quick recovery time means I am looking forward to getting back out onto the golf course soon, hopefully next week.

Tom

PS - the cat though is extremely unhappy at having his lap privileges withdrawn.

PPS - You might be surprised at how long it took me to get the procedure done, but this was entirely at my request as we had a big holiday planned and didn't want anything to get in the way of that. The hospital said that the procedure could wait that long because of my circs.  

 

Edited by member 24 Aug 2023 at 15:02  | Reason: Not specified

User
Posted 24 Aug 2023 at 20:56
Well done Tom!

It's certainly an easy enough procedure and I've only suffered from very mild side effects - the worst one probably being more tiredness than usual. I'm now just over 3 months post procedure and still try and slink off for a nap if no-ones looking!

User
Posted 24 Aug 2023 at 23:05
I too am leaning towards the Brachy choice once I'm ready to make the decision.

Had my first consultant appointment yesterday after learning I had PC a few weeks ago (T2 N0 M0 Gleason 3+4).

He gave me the AS, RP, RT and Brachy choices.

I have quite serious artery narrowing in the heart, and probably on the verge of the angina stage.

His opinion was that this significantly increases my risk in operations because of the anaesthetics. Whilst he wasn't saying RP was the wrong choice, the risk might not make it the obvious choice (if there is such a decision).

For now I've gone on AS whilst I digest all this and try to form some preference.

I suppose for me, the calcification could get me well before PC does. Quite a big dilemma.

Found this quite an interesting read:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10252630/

User
Posted 25 Aug 2023 at 11:03
Hi ohwow

Thanks for the response. I am sorry to hear that you have an extra complication to what is already a difficult decision to make. I think it is possible to have the Brachytherapy procedure under local anaesthetic.

Good luck with the decision, if you have any questions that I can help with regarding Brachy please let me know.

Also thanks for the link, that is an interesting article.

All the best

Tom

User
Posted 25 Aug 2023 at 11:14
Hi Tom, I am going for my first six month review ( nine months after procedure) on Monday. Three months after my brachytherapy my PSA fell from 8.6 to 0.8. The doctor said this was very unusual as that usually takes about nine months.

I still get very tired however I am beginning to think that might be due to something else ( apart from being bone idle!🤔 ). I will try and organise a generic blood test after my review.

All the best

Dave

User
Posted 25 Aug 2023 at 13:07
Ohwow

Just one thought would be that are your coronary issues getting any worse? If you did want RP then would it be better sooner rather than later when you might be in such a worse position to handle it?

The brachy is certainly a simpler solution for you given that it is done under a local and as long as your consultant is certain of your T2 diagnosis. In my case my 3+4=7 became a 4+5=9 T3a on the post RP lab histology report so even though I was offered brachy at the time, I am glad that I chose the RP.

User
Posted 25 Aug 2023 at 14:43

Thanks Tom, appreciate the comments and advice. This forum in totally invaluable for us I believe. You cant get this on the NHS!

Hi Steve86, yeah I think any coronary calcification is a 1-way deal as technology stands at the moment. There is no wonder drug (yet...fingers crossed) that will clear the arteries. Its down to how it develops and if stents are enough or a full multi bypass. The latter being a major op that would overshadow any PC concerns for me at present. These problems will only get worse, and I imagine most of us has a level of narrowing, its just mine is quite advanced. And that impacts considerations for other medical procedures.

The consultant felt I need to at least get to a more stable footing (whether that be stents or bypass) before considering RP, although he appreciated some people just want rid of the prostate as soon as a diagnosis is given. I could indeed elect to go down that route before anything else gets worse. If my AS suddenely takes a turn for the worse over next 2 or 3 readings, think it would then be a no brainer.

Its very concerning that a full accurate diagnosis cant be achieved until post lab. If I understand that correct? I've seen a few threads on here saying similar to yourself. I can understand why, there just is no way that kind of detail can be checked until they have their hands on the prostate. Seems to me any biopsy will never get the full picture as they cant analyse ever little spot. Again only time and technology advancements are going to resolve that conundrum.

Edited by member 25 Aug 2023 at 14:49  | Reason: Not specified

User
Posted 28 Aug 2023 at 18:39

Hi Tom My journey may be of interest. I had prostate HIFU left side ablation last year on Gleason 3+4 at UCLH. Cancer returned in the ablated field soon afterwards and also on the right so was now bilateral, Gleason 3+4 risk group T2C Intermediate.  UCLH advised whole gland treatment required and gave me a choice of salvage prostate removal or RT.  I did not want the RT as 18 months of aggressive hormone treatment would tie me to numerous hospital visits, with many side effects like weakness incontinence etc. After research i am very disappointed in lack of counselling prior to HIFU. This procedure is not approved in US or EU. One NY Study describes recurrence as 35-42% but i was advised 15% chance of failure. The same study referred to the effect on the anatomy of HIFU treatment as "unknown". I dug deeper. In 2018 a study by UCLH suggested cancer recurrence after HIFU in the treated field may be due to fibrosis of tissue leading to reduced blood flow encouraging a more aggressive form of cancer!  I wish i did the research before the HIFU. After the cancer returned bilaterally UCLH advised how technically difficult salvage prostatectomy would because of the nerves and rectum being fused to the prostate gland during HIFU. They insisted all nerves would have to be removed. So total loss of erectile function. This turned out to be the line given out in the NHS to cancer patients but it is due to the increased cost and resources required of a nerve spare op. Ive now been forced to go private with the prof. who also operates at guys and guildford who has now performed a successful salvage prostatectomy with 100% nerves intact and has done thousands of robotic prostatectomies with 'intraoperative frozen section nerve spare'. They only cut out the nerves they need to after doing the histology while your asleep. Its c.£22k.  It is simply unacceptable UCLH do not Counsel cancer patients about the range of research over failure risks, and the consequences if you want to retain sexual function if HIFU failure happens before you decide on it. I am relieved to have the prostate out and relieved to retain the nerves supporting sexual function. I hope this experience can give some perspective to others.

User
Posted 29 Aug 2023 at 11:53

Hi Paul77

Thank you for the message. I am so sorry to hear that the HIFU treatment was unsuccessful. HIFU was not an option I considered at any great length and it was not an option offered to me by the MDT, although I suppose if I had wanted to push it I expect I would have found a way. Anyway that's all academic as I quickly realised Brachy was the one for me. So far so good, its now now ten days post implantation and there have been no problems with continence or frequency, or indeed sexual function. I do feel more tired than usual though, but I was warned this might be the case. Of course there is the chance it will not prove successful in the long term and I may need a salvage RP/RT. I did discuss this at the hospital and was reassured by their confidence that this would not be a big problem.

All the best

Tom

 

Edited by member 29 Aug 2023 at 12:00  | Reason: Not specified

User
Posted 29 Aug 2023 at 14:28

RP after radiation treatment is very difficult - number of consultants who are willing to take on this task is limited. When I chose RP 12 years ago I was given all other options but decided on RP because the consultant showed me the result of the MRI scan and pointed out that I had ample clear margin. He also told me that radiation options really rules out surgery afterwards. It is always a very difficult choice. I purposefully never advise anyone to go for RP or not. 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 29 Aug 2023 at 14:56

Ok thanks Pratap. That is definitely at odds with the information I was given a few weeks ago. Maybe things have moved on in 12 years. 

I agree no one should recommend one treatment over another, something the consultants I saw stuck to. 

 

Tom

 

 

Edited by member 29 Aug 2023 at 14:58  | Reason: Not specified

User
Posted 29 Aug 2023 at 16:48

You are right, I don't have the latest opinion on this. Nevertheless, it seems to me that for the initial treatment it is important to make the right choice (however you do it). If you are choosing RT with a view to thinking that if it fails you can rely on the second bite at the cherry via prostatectomy does not seem logical to me.I have Googled to find some information and all I can find is that because of scare tissues left after RT, surgery poses a real challenge and also there is some evidence that the risk of incontinence/ED following salvage prostatectomy are considerably higher. It is 'rock and a hard place' situation. One thing for sure, people who are diagnosed now stand a much better chance of a 'cure' or at leat a much longer life than I had.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 30 Aug 2023 at 10:02

Yes it is clear that post RT the scar tissue makes RP much more challenging, but not impossible. Each to their own but for me there is nothing that is not "logical" about assessing all the possible outcomes when you make an important decision. If I had been told that there was no possibility of successful salvage treatment for the 5-10% of people for whom Brachy does not eliminate PCa then it may have affected my decision. As with not pushing anyone down any treatment route I feel it's also important to support all sufferers of this nasty disease in the way they choose to analyse potential outcomes. 

Edited by member 30 Aug 2023 at 10:04  | Reason: Not specified

 
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