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Active surveillance or treatment??

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User

Posted 30 Nov 2018 at 10:07

Hi there

For Francij1

i am very interesred in this genetically mapped from discovery to death G6 case.

Can you provide the background?

My husband opted to keep his prostate as having it removed is as we all know a very big deal and should not be done lightly by anyone with a low risk diagnosis.

The mental impact on men of losing erectile function losing the ability to ejaculate and indeed losing penile length is enormous.

The mental impact on men of having their urether cut and is major too. I have heard it described as feeling like they have just played ‘Russian roulette’ - will they be one of the ones who dodge the bullet and get continence back straight away or will they be one of those who never gets continence back.

our recommending RP surgeon stated that stress incontinence is likely to be the new norm ( and that this is considered a good outcome).

The mental impact on men of a change to their work pattern alone can be high too. A radical treatment is more likely to impact here too.

So a decision to remove a prostate because of a G6 tumour is indeed a radical ( and personal) decision.

if you could share the G6 to death background that would be great as l not come across this in my research.

Thanks

Clare

User

Posted 02 Dec 2018 at 13:21

Originally Posted by: Online Community Member

My husband opted to keep his prostate as having it removed is as we all know a very big deal and should not be done lightly by anyone with a low risk diagnosis.

The mental impact on men of losing erectile function losing the ability to ejaculate and indeed losing penile length is enormous.

our recommending RP surgeon stated that stress incontinence is likely to be the new norm ( and that this is considered a good outcome).

The mental impact on men of a change to their work pattern alone can be high too. A radical treatment is more likely to impact here too.

So a decision to remove a prostate because of a G6 tumour is indeed a radical ( and personal) decision.

if you could share the G6 to death background that would be great as l not come across this in my research.

Thanks

Clare

Clare I think you have got my personal situation down to a TEE in your analysis of your husbands case

I am very much against the over treatments and realise that this too may be a gamble with the length of my life but quality in the near term is very important to me and many others I have no issues with my health and it doesnt affect me mentally having cancer

We all die one day!!

I am prepared to talk things through with an independent member of another prostate team to gain a better understanding of the progression and options available

I too am reading about "Is grade 6 Gleason cancer", many articles support Active surveillance which I am more than mentally capable of handling even if the decision goes against me in the future

Bernie

onlymeagain

User

Posted 02 Dec 2018 at 13:28

I too am a newbie to the Prostate Cancer NHS Case load

Just to let you know that I was diagnosed in October 2018 PSA 99 then 67 T2 Biopsie not good at all but the good news is The Active Cancer hasn't spread.

What a relief after two months of "What next?" Wait and See "More tests then a scan' wait and see

Decision Active Watching - seeing a consultant in January after another PSA.

I am now planning my life forward again - hooray.

As a matter of interest I did the Sloan Kettering thing and according to the statistic analysis - PROBABILITY

The good news is that I have a TWO percent chance of dying from untreated prostate cancer in ten years

The bad new is that I have an 88 percent chance of dying of some thing else

The really good news is that means I have ten percent chance of living ten years - possibly much more than I expect

regards

Mervyn

If you find any more sad links to Kierkegard words of wisdom - for crying out loud, be a bit more optimistic and original

Proverb - Statistics are brilliant - especially if you know the answer you want before you start

User

Posted 02 Dec 2018 at 13:50

Hi Mervyn,

Good news that your cancer is contained.

Bear in mind that the MSK Nomograms are prognostications (think Mystic Meg) based on up to fifteen-year old data. Medical science, particularly in the field of PCa, has advanced dramatically over that period.

Might I politely suggest that when you make your next post, you start a thread under your own account - not the easiest thing with this bulletin board - so that we can track your progress in future.

Best of luck at your consultation in January.

Cheers, John.

User

Posted 02 Dec 2018 at 14:02

My OH (55) was told he had cancer in 2016 Gleason Score 6 PSA 6.6 T2a, he went on AS and had his PSA tested every 3 months it slowly went up to 10.2 and in May 2017 he decided to have surgery, 6 weeks after the operation we got the results, it had just started to escape the capsule and he was upgrade to T3, PSA undetectable so far, he has never had a problem with incontinence but had problems with ED which we worked on from the start as it was important to us, today we have a full sex life with the help of a wee tablet. He has never regretted going for surgery and we look forward to the future. Everyone journey is different and personal to them, this was our course of action we choose given our research results and information.

User

Posted 02 Dec 2018 at 17:28

Linda, your post has given me a lift. I have been feeling very lo, worrying about my husband. He is having his op next Monday, he has been staged as T3, G 6.

He’s absolutely dreading any incontinence and ED. It’s reassuring to read your post.

Thank you

User

Posted 02 Dec 2018 at 18:48

I didn’t have a biopsy for over a year as my PSA was going up and down so was told cancer was unlikely. In the end it spiked, I had the biopsy and it was G9. I had the op two months ago but as it was T3b there was no nerve sparing. It’s a big life change but my first post op psa was ‘undetectable’ and being cancer free was the goal. You need to take the professional advice, if they think AS is safe it seems like the best route but I do wonder in my case if perhaps I waited too long and subsequently lost the possibility of nerve sparing. That said I did have a year of relative normality that I wouldn’t have had if I’d had the op earlier.

I know some men avoid treatment altogether to maintain full sexual function and avoid the potential incontinence issues but although prostate cancer is not the killer it was it’s still not to be trifled with. Treatment is advancing all the time and many men now come through with minimal lifestyle changes.

User

Posted 02 Dec 2018 at 19:22

Sexual function vs cancer?

f*** it!

Cheers, John.

User

Posted 16 Jan 2019 at 07:04

Originally Posted by: Online Community Member

I get where you are coming from, itsmeagain. With a very low % involvement and low Gleason, continuing on AS would seem to be a no brainer. It seems that the MDT has caused some confusion by throwing in this idea that because the low volume tumour is close to the edge, it might be through the edge. They might be being risk averse - and you can hardly blame them since many patients would feel aggrieved if they advised the other way round and turned out to be wrong - so you could ask instead what the impact might be of not taking their advice now. For example, if you reject the view of the MDT now, will that impact on your access to detailed scans and biopsies in the future? If you remain on AS for 3 months until your life and finances are a bit more settled, would they be agreeable to another mpMRI at next review?

Well My previous PSA in October post the the transpirineal biopsy was elevated to 6.1 As this was only 3 weeks after the biopsy I queried the result as I felt that the blood test had been carried out too soon after.

I have since had new bloods taken and my PSA is back down to a slightly elevated norm for me of 4.8.

My relationship with the young surgeon is not as good as I would like as I feel that I am having to continually run through my results with him and his view is that AS with my results is not normal, I have now agreed to remain on AS for the next 3/4 months and my next bloods will be taken in May with a follow up appointment with a different consultant.

I have asked for my scan to reviewed at a different facility and this seems to have been agreed but I am not 100% confident of this as the doctor hasnt had the first biopsies with G 7 reviewed despite my request

I have been told that i can have another MRI and that holding back on treatment will not prevent this.

The diagnosis of my MRI being near the edge is graded as T3 is not as it should be T2 so I wnat to have another opinion and if necessary a further scan if the original scan results are unclear

My specialist Nurse is excellent and so I am liasing through her as she understands me better and is asking for a different surgeon to take over my case

User

Posted 07 May 2019 at 16:47

I got the scan results today and a meeting with a different consultant at The Christie in Manchester a real nice guy, with great qualifications

No discernible change in my scan compared to 12 months ago and with my set of results he is comfortable keeping me on Active surveillance with annual scans and blood tests every 4 months

His view was similar to mine in as much that there is no break through into the capsule so it is a T2 not T3

I know I got what I was wanting to hear and only looking backwards in the future will show if it is the right decision

My PSA is still below 6 and he said he wouldn't be too concerned unless it got upto 15 or more

He asoo said he didnt want to continue with lots of Biopsies as he "didnt want to remove my prostate 1 needle at a time

So carry on regardless

Onlymeagain

User

Posted 03 Oct 2019 at 00:42

another 6 months gone Prostate still intact

PSA steady at 6.1 new consultant at the Christie quite happy to continue with AS and I go back for another review early in the newyear

My personal lfe is settling down and by not having the treatment I have had much less to contend with so at this time life is good

Onlymeagain

User

Posted 03 Oct 2019 at 00:45

Brilliant - I am pleased that things are settling down

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

User

Posted 24 Sep 2020 at 09:25

Well!!!!!
Life has changed dramatically- for the better !!
A court case I was battling with has been withdrawn in my favour, my wife and I are reconciled and she is back to her previous loving self
I am particularly busy with work despite Covid restrctions -----Mentally I am much better and so backto PC

I am now 65 and very fit and healthy

I was fully diagnosed 3 years ago after simple biopsy gleason 3+4 but only10%involved and 2 out of 6 cores I elected AS
I have had clear bone scans,my first MRi showed small volume close to edge of prostate but not out and a trans perrineal bipsy targetted on suspect areas showed only 3+3,My PSa has been bouncing from 4.7 to 6.9 up and down every time My latest PSa is 7.4 I am still not too concerned but my consultant has suggetsed another trans perineal biopsy I didnt enjoy my last one and felt it affected my erections adversly although reasonable
My 2nd MRI has shown no discernable change from 2 years ago
I am unsure whether to have this biopsy and comments will be appreciated
Bernie
Only meagain

Edited by member 24 Sep 2020 at 09:26 | Reason: Not specified

User

Posted 24 Sep 2020 at 15:03

My OH was on AS his PSA was slightly higher than yours (10.2) his consultant told him it was time to take action, he refused another biopsy as he had a infection after the first one, he was offered a high resolution MRS scan, which we could clearly see that the tumour was right on the edge of the prostrate. He decided to go for surgery in May 2017 it was found that it had just started to break through. His PSA started to rise in Dec 2019 and has been at 0.1 i his last two tests, waiting results of his recent PSA, as long as it below 0.2 he will carry on with 3 monthly tests.

Edited by member 25 Sep 2020 at 12:58 | Reason: Not specified

User

Posted 24 Sep 2020 at 15:28

Happy for you that things have worked well so far. Scans have certainly improved considerably over recent years but cannot be relied on 100%. Your consultant has suggested a further transperineal biopsy but it might help you to know how much importance he attaches to doing this soon rather than leaving it for perhaps for 6 months. As often happens, the decision seems to be left with you to make. In your situation I am sure members here would come to different decisions.

Barry

User

Posted 24 Sep 2020 at 19:12

Mine was a telephone consultatation and unlike beng in front of the doctor it tends to be a quick couple of minutes without time to refelct and ask further questions on the decision.

Initially I said that I was happy to continue on AS without further biopsies but because of lack of time to consider I said yes to having the biopsy and in hind sight I am having second thoughts about it I have no major problems with my water works maybe a little urgency but I put this down to poor control as I tend to get an ifffy tummy in the morning after my third coffee and struggle to hold things.

I am a non smoking healthy builder so active a the lads that work for me often cant keep up with me so I want to delay any major treatment as long as I can,

I talk to myself that many men die with prostate cancer and not of prostate cancer but in saying that I am realistic and not burying my head in the sand

Bernie Onlymeagain

User

Posted 24 Sep 2020 at 20:51

Strange. Your biopsy results were not that far different to mine, and with Tamulosin I had no problems with my waterworks, except needing to go a bit more frequently, but AS wasn't even discussed - 3+4 was seen as requiring treatment. TBH I wouldn't have considered it even it was, especially given the number of times the histology results are worse than the biospy suggested.

Age is also a factor in successful outcomes, and while general fitness helps, more key, at least for surgery, seem to be things like weight and whether you smoke.

User

Posted 18 Apr 2025 at 09:20

After 7/8 years on Active suveillance without any noticable symptoms and with pressure from my wife and consultant with PSA 21.7 I had non nerve sparing RALP January 3rd 2025 operation I was mentally Ok with PC diagnosis My life was good.-no it was very good!

Operation went well but I came home with a catheter and stomache drain both removed 1 week later I was fully incontinent and changing pads every few hours

I was in terrible agony and pretty much delerious at times for a week before seeing my urine was flourescent yellow,I had a very severe water infection PUS count 13,756 with a norm that should be less than 40.

My 1 month follow up revealed PSA undetectable Less than 0.01 and the pathology on my prostate revealed only gleason 3+4

My water infection continued for 8 weeks in total and 8 scripts of antibiotics now PUS count only 2

I am totally incontinent and no feelings tall in my little man who is limp and lifeless

This op has affected my mental health negatively,I feel like I am back to being a child wetting the bed and wearing nappies(pads)

Have I done the right thing -too late it's done

Do I regret it -probably

I am now in a new phase of my life and working hard on myself to accept and get on with it

I cant change the past,and I cant predict the future

I may not live any longer than I would have before the RALP but mentally It feels like it

I am now an old man running to the toilet and no sexual function, pre- op I was Peter Pan and the fittest 70 Year that could and does pass for being in my 50's

All of the platitudes about being cancer free- not needing a hard on in a coffin and living longer etc etc are no consolation.

I am not looking for sympathy or guidance just passing on my experience of my life with PC

Onlymeagain

Edited by member 18 Apr 2025 at 09:22 | Reason: typo

User

Posted 18 Apr 2025 at 10:35

Hi Bernie,

I'm sorry to hear that you've been struggling post op. At least selecting active surveillance gave you 8 years of being side effect free.

I'm a great advocate of AS, even though my own failed miserably.

We're about the same age and appear to have a very similar outlook on life. However, unless your domestic situation has changed, our circumstances are quite different. I'm retired. My wife is only 7 years younger than me, and our kids are now in their mid thirties and forties. It must be far more difficult to deal with this disease if you've still got work commitments and have got a much younger partner and younger kids.

I hope your incontinence issues improve, mate. As for erectile dysfunction, my op was non nerve sparing, so down below is as dead as a Dodo. However, Invicorp injections work for me and give strong enough erections for penetrative sex.

As you say it may be a case of having to adapt to a new way of life. I wish you and your family the very best.

Edited by member 18 Apr 2025 at 10:46 | Reason: Typo

User

Posted 19 Apr 2025 at 15:46

You will never know whether had you had your surgery when first suggested the side effects would have been so severe as experienced now but remaining on AS did give you all those years on AS that were free of side effects. You still might recover continence but that it takes a long time, as it does in some cases. Wish it does improve for you.

Barry

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