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User
Posted 31 Jul 2024 at 14:24

So. In March I was diagnosed with PCa and I was informed by phone and told I had a very small area in the middle of the gland in the transitional zone not to worry it was a Gleeson 3+3 and would grow very slowly if at all.

Move on to the middle of June and I receive my histology report, I have four separate areas, 3 with gleeson 6 confirmed and a fourth indeterminate, all in the PZ not the TZ, two of which are at the posterior of the gland close to the prostate wall one in the apex 7 out of 20 cores positive. my last PSA was 8.66 my next test is due at the end of August. I am now not sure about the whole AS thing, if I have surgery now I am fit enough to handle the surgery and side effects, I am worried if I leave it the chances of it breaching the prostate are now higher than I was previously lead to believe.

Has anyone else been in a similar position and been put on AS. I have not been offered any other treatment than AS but I am sure surgery would be a wiser option given the histology report. 

User
Posted 31 Jul 2024 at 14:24

So. In March I was diagnosed with PCa and I was informed by phone and told I had a very small area in the middle of the gland in the transitional zone not to worry it was a Gleeson 3+3 and would grow very slowly if at all.

Move on to the middle of June and I receive my histology report, I have four separate areas, 3 with gleeson 6 confirmed and a fourth indeterminate, all in the PZ not the TZ, two of which are at the posterior of the gland close to the prostate wall one in the apex 7 out of 20 cores positive. my last PSA was 8.66 my next test is due at the end of August. I am now not sure about the whole AS thing, if I have surgery now I am fit enough to handle the surgery and side effects, I am worried if I leave it the chances of it breaching the prostate are now higher than I was previously lead to believe.

Has anyone else been in a similar position and been put on AS. I have not been offered any other treatment than AS but I am sure surgery would be a wiser option given the histology report. 

User
Posted 31 Jul 2024 at 14:56

I was not offered AS because my cancer was too aggressive. There are certainly others on this site who can tell you about their experiences of it, and it is a topic on which people have differing views.

What I would say is that you should certainly take time (which you have because Gleason 6 cancer grows very slowly) to consider carefully and not panic or rush into surgery. As well as the experiences of others on this site you should also take time to read about major studies which, on the whole, have shown that AS can be a very good option. For many men it means that they can have years more of life without having to undergo radical treatments. For quite a lot of men (perhaps half), they manage to avoid ever having treatment. These are benefits which are not to be taken lightly. Waiting also creates the possibility that better treatments might come along in the future.

The other thing I would say is that, if you do go for AS, the emphasis should be on the A for active, i.e. it is important to have regular scans and blood tests to keep an eye on things.

I wish you all the best whatever you decide to do.

User
Posted 31 Jul 2024 at 16:40

Hi Paul.

I agree entirely with KS25

Please read a conversation I started.

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance.

I don't know if you'd be classed as T2c, but it shows the pitfalls of AS for some. However, despite my AS failure, it's still an option I'd have considered.

To me the biggest risk of AS is the accuracy of the first biopsy. Biopsies aren't an exact science and can miss the more aggressive cancer cells. This is what they are now blaming for my rapid disease progression whilst on AS.

Edited by member 31 Jul 2024 at 17:07  | Reason: Link

User
Posted 01 Aug 2024 at 22:22

I agree with everything already said on here, but would urge you to be very vigilant if you choose AS, and ensure you are in control of it. I spent some months on AS being told I needn't worry, and everything would fine, despite a continually rising PSA result.

After 4 rises I insisted on being referred for surgery, even though my consultant was adamant I could wait another 3 months and see what my next result was. It turns out my disease had progressed significantly. The tumour had broken through the capsule and when they did the slice & dice afterwards, they found tertiary Gleason 5 cells lurking in there as well.

I still believe AS is a great option, but you have to be very sure you're suitable, and also keep right on top of your follow ups to make sure you are happy with everything.

Good luck with whatever you choose.

Ian.

User
Posted 02 Aug 2024 at 08:38

Thank you all for your comments and advice. I am taking my time with this and reading a lot of the journals and research. It just came as a shock to be told the initial diagnosis as a small tumour in the middle of the prostate to then four months later be told it was four tumours, bilateral and two are close to the prostate wall. I felt like I had been diagnosed all over again. My intention is to wait until the end of August for my next PSA test and see what the result is, but to honest given the outcomes I can find so far in research journals relating to a T2c, even with a low Gleason I think I will be going for surgery.

Thanks again for all you input.

Paul

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User
Posted 31 Jul 2024 at 14:56

I was not offered AS because my cancer was too aggressive. There are certainly others on this site who can tell you about their experiences of it, and it is a topic on which people have differing views.

What I would say is that you should certainly take time (which you have because Gleason 6 cancer grows very slowly) to consider carefully and not panic or rush into surgery. As well as the experiences of others on this site you should also take time to read about major studies which, on the whole, have shown that AS can be a very good option. For many men it means that they can have years more of life without having to undergo radical treatments. For quite a lot of men (perhaps half), they manage to avoid ever having treatment. These are benefits which are not to be taken lightly. Waiting also creates the possibility that better treatments might come along in the future.

The other thing I would say is that, if you do go for AS, the emphasis should be on the A for active, i.e. it is important to have regular scans and blood tests to keep an eye on things.

I wish you all the best whatever you decide to do.

User
Posted 31 Jul 2024 at 16:40

Hi Paul.

I agree entirely with KS25

Please read a conversation I started.

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance.

I don't know if you'd be classed as T2c, but it shows the pitfalls of AS for some. However, despite my AS failure, it's still an option I'd have considered.

To me the biggest risk of AS is the accuracy of the first biopsy. Biopsies aren't an exact science and can miss the more aggressive cancer cells. This is what they are now blaming for my rapid disease progression whilst on AS.

Edited by member 31 Jul 2024 at 17:07  | Reason: Link

User
Posted 01 Aug 2024 at 11:03
Adrian is spot on - there are several us active on the forum where the original diagnosis was under-diagnosed and post surgery histology painted a worse picture. AS would not have been the right answer.

I know that AS gives you time but surgery also gives you the opportunity to recover at an earlier age - yes there are side effects but they are not life changing and for the percentage of people on AS who will need surgery, it gives a much better chance of curative treatment.

User
Posted 01 Aug 2024 at 11:58

As Steve and Adrian have said, underdiagnosis is the crucial issue here. If you could be sure that the cancer really was Gleason 6, then that would surely swing the decision heavily in favour of AS. That does perhaps mean that it is worth putting as much effort as possible into getting the diagnosis right, possibly even going for further tests. I do fear that some men end up feeling that they need to have a prostatectomy just to find out if the cancer really is Gleason 6.

I think that we would all hope, moving forward, men will not be in that position because the various scans and tests are becoming increasingly accurate so that men can have increasing confidence that their diagnosis is correct. (This would not, of course, remove the need for surveillance because there is always the danger of a second cancer,etc.)

One point on which I don't necessarily agree with Steve is on his statement that the side effects of a prostatectomy are "not life-changing". My impression is that for many men they are life-changing but it would be interesting to hear what others have to say about that.

Edited by member 06 Aug 2024 at 17:46  | Reason: Not specified

User
Posted 01 Aug 2024 at 12:20

One other point that I would make is once again to urge you to look also at reputable studies on this topic and not rely only on this forum.

This site can be a very useful source of information on the real life experiences of people in a similar boat and I have found it so myself.

There is, however, a danger of bias in some areas. For somebody in your situation, for example, it is certainly useful to hear the tales of when AS hasn't worked out so that you are aware of the potential risks and things to guard against. But there is also a danger that it may paint a somewhat pessimistic picture because you won't generally hear on here from the men who may have been successfully on AS for many years - because most of them won't ever be members of this forum!

User
Posted 01 Aug 2024 at 12:44

As KS25 states this forum is very heavily biased to bad outcomes. No matter what treatment is discussed it's usually the bad news that posted on here.

They'll be tens of thousands of men that have been successfully treated and have never needed to join us. Many of these will be on successful active surveillance.

Active surveillance is becoming far more common and acceptable way to deal with low grade prostate cancer.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

 

User
Posted 01 Aug 2024 at 12:51

I’m 14 months post surgery and it has been life changing for me. I now leak when I didn’t before and can no longer get an errection naturally. BUT I am lucky. There were guys in the waiting room who could not be treated and their prognosis was a lot worse than mine. So yes it has been life changing because if i had not been tested and identified early then in a few years time my life could have been changed for the worse. 

User
Posted 01 Aug 2024 at 14:37
I would also consider how you feel you would react personally to the ‘watch and wait’ scenario! Could you cope with it mentally, or would you be in constant fret mode, wondering is the next psa/scan/biopsy going to show the cancer broken through the capsule? Also consider how often you would have to have biopsies to be certain everything being done to monitor (copeable with but not pleasant…so I’m told!)

When my husband was diagnosed last year Gleason 3+4, cancer in both sides of prostate, they offered surgery or AS and said it was totally our decision. We strongly considered AS because of the potential side effects of surgery, but after a few days thinking about it, knew that the constant worry would get to us so Steve had surgery in January this year.

Despite being in the thick of full incontinence and ED, he still believes he did the right thing, his histology showed cancer all contained so we view it out and gone!! We have lots of positivity going forward with the side effects!

I agree with what’s been said earlier…there’s a lot on here who feel they made a mistake with AS for various reasons, but there will be a lot more men out there who have never needed the support of this site so carry on regardless.

Good luck with your decision!

Debbie

User
Posted 01 Aug 2024 at 20:05

Brachytherapy might be a good option.   It might be you'd need to go to a different hospital to have it.  So they might not be over keen.

Some of the doctors on YouTube give the impression a 3+3 is hardly pca and the likelihood of spread is low.  Although psa 8.6 isn't that low.   My Gleason was increased after the operation from 4+3 to 4+4.  If you had a 20 needle biopsy it should have seen more, mine was 12 and 2 didn't have a sample.  Only one pin found anything. 

User
Posted 01 Aug 2024 at 22:22

I agree with everything already said on here, but would urge you to be very vigilant if you choose AS, and ensure you are in control of it. I spent some months on AS being told I needn't worry, and everything would fine, despite a continually rising PSA result.

After 4 rises I insisted on being referred for surgery, even though my consultant was adamant I could wait another 3 months and see what my next result was. It turns out my disease had progressed significantly. The tumour had broken through the capsule and when they did the slice & dice afterwards, they found tertiary Gleason 5 cells lurking in there as well.

I still believe AS is a great option, but you have to be very sure you're suitable, and also keep right on top of your follow ups to make sure you are happy with everything.

Good luck with whatever you choose.

Ian.

User
Posted 02 Aug 2024 at 08:38

Thank you all for your comments and advice. I am taking my time with this and reading a lot of the journals and research. It just came as a shock to be told the initial diagnosis as a small tumour in the middle of the prostate to then four months later be told it was four tumours, bilateral and two are close to the prostate wall. I felt like I had been diagnosed all over again. My intention is to wait until the end of August for my next PSA test and see what the result is, but to honest given the outcomes I can find so far in research journals relating to a T2c, even with a low Gleason I think I will be going for surgery.

Thanks again for all you input.

Paul

 
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