Active Surveillance Doubt

User

Posted 03 Nov 2024 at 22:01

Hi everyone,

I have been on Active Surveillance for around 1 year and 1/4, my last blood test my PSA had gone up from 6. 1 to 7.1, I had already made up my mind about treating the Cancer with Brachytherapy. But was advised to wait for 2nd Biopsy. I had Biopsy 1 week ago and results revealed the Cancer core has gone from 20% to appx 80 %., and I am now Gleason 4 + 3.

They will now do my referral fro treatment, but need to do MRI and Bone scans to see if it has breached the Prostate, I was Not happy at all. The fact that they did an MRi scan and it had shown no difference 3 months ago, really means nothing if something like this can happen.

If it has spread outside the Prostate, that takes away or makes my choices much more difficult, this Active Surveillance should come with warnings. I'm still positive but slightly peeved.

I'll keep you posted on results from Scans, and hopefully referral for Brachytherapy

Cheers

Dave

User

Posted 04 Nov 2024 at 09:45

Sorry to hear that Dave. I had a similar experience with AS, going from T2 to T3a in 10 months. My PSA rose gradually from 5.9 to 8, whilst they told me I had nothing to worry about and should stay on AS.

Luckily I insisted on starting treatment (which is when they discovered the progression), otherwise I could have ended up in all sorts of bother.

Good luck with your results, and keep us posted.

Ian.

User

Posted 05 Nov 2024 at 13:39

Hi Adrian

I was diagnosed Gleeson 6 in March and was not given any options just told "you are on AS" I pushed for further information, turns out I am a T2c PSAD .22 with 7 out of 20 cores. 4 separate lesions two near the prostate wall.

It has taken me until now to get a surgery date (5th of Dec). AS is not for the faint hearted and the NHS are not following guidelines, they seem to be making excuses not to treat, and kick the can down the road.

User

Posted 14 Nov 2024 at 19:11

I understand your Doctor is continuing to encourage you to stay on AS. I don’t know that their recommendation is based on a financial one. AS certainly is extremely valuable for quality of life issues such as incontinence ED and rectal issues. It was overwhelmingly shown prostate cancer patients were over-treated in the past with surgery and radiation and incurred these side effects when they might have never needed treatment and never incurred side effects that affected quality of life and hence AS.

Unfortunately not everyone can remain on AS and that is the need for continued regular surveillance through PSA checks, MRI’s and additional biopsies. Also unfortunately no one knows exactly when that tipping point at what month or year the cancer needs treating. Many on AS are devastated to hear they now need treatment as it appears the cancer has left the capsule. That is the point, it is really difficult to know when that point is going to occur, but if caught early through active surveillance most treatment options including surgery are still available. I think many people on AS believe it will always be caught just before breaking out, but more likely it is caught after that, because the cancer for the patients who ultimately will have to leave AS, that cancer is growing. The belief in AS is that this gives patients possibly many years of quality of life with no incontinence and ED and also many times in those patients on AS that AS did not work maybe an additional year or two. That becomes the trade off if you are able to accept that if you are on AS and it fails and although the cancer might have left the capsule you will get successfully treated as if you immediately were treated in the first place. The difference is for maybe two additional years you enjoyed the highest quality of life but with the trade off knowing that you have cancer inside of you that could be growing. Understandably that is difficult for some to accept. Also new treatments and techniques are always in the pipeline that if you are able to hold off on treatment it might be something that becomes available to you.

AS is a difficult decision but it’s a trade off only you can decide and unless you are totally comfortable with the trade off, you should pursue treatment options now. The decision can also not just be whether medically it’s acceptable to wait, it can be for a person’s mental health knowing the cancer is gone that treatment should begin.

User

Posted 03 Nov 2024 at 22:01

Hi everyone,

If it has spread outside the Prostate, that takes away or makes my choices much more difficult, this Active Surveillance should come with warnings. I'm still positive but slightly peeved.

I'll keep you posted on results from Scans, and hopefully referral for Brachytherapy

Cheers

Dave

User

Posted 04 Nov 2024 at 10:01

Hey thanks for the post Ian, yes I'm gutted, from Gleason 3 + 4 to 4 +3 and going to 80 percent of the core 4 from 20 % is a big worry, I'll be expressing my displeasure this week with both parties.

Big lesson here (in my opinion ) AS is for 3 + 3 candidates only, i wouldn't advise anyone beyond that to do AS after this experience

Cheers pal

User

Posted 14 Nov 2024 at 12:55

Hi Everyone,

Just a quick update.

Had my results back from my MRI and Bone scans, and they have come back clear, so although the cancer has increased, at this point in time it remains inside the Prostate.

I had a meeting with the oncologists, who advised although my cancer is now 4 + 3 it is due to various technical elements. Either way, it appears I'm still a candidate for Brachytherapy, but will only know for sure when I have an actual scan at the Cancer treatment centre.

I've had to learn to take every bit of information with a grain of salt until i get to the end, the mistrust has come from my understanding, they are still at an early stage of understanding cancer, and it appears,wait and see, is still a form of treatment.

I don't take anything for granted! Day by day, treatment by treatment.

The oncologists still believes, despite the change from 3 + 4 to 4 + 3, Active Surveillance was the best choice. I beg to differ on this, but after today's appointment I'm less angry and annoyed with their pushing for it.

I have come across some brilliant staff, the oncologists have been great, I think I'm annoyed at the protocols and system they follow, they need to be looked at, and adjusted to what patients have said, on this group and others.

Will keep everyone posted on what happens next.

Just a quick word to say, What a helpful group this is, I came here first before I even spoke to my good friend on this, so thanks.

Cheers

Dave

Edited by member 14 Nov 2024 at 18:09 | Reason: Not specified

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User

Posted 04 Nov 2024 at 09:45

Luckily I insisted on starting treatment (which is when they discovered the progression), otherwise I could have ended up in all sorts of bother.

Good luck with your results, and keep us posted.

Ian.

User

Posted 04 Nov 2024 at 10:01

Hey thanks for the post Ian, yes I'm gutted, from Gleason 3 + 4 to 4 +3 and going to 80 percent of the core 4 from 20 % is a big worry, I'll be expressing my displeasure this week with both parties.

Big lesson here (in my opinion ) AS is for 3 + 3 candidates only, i wouldn't advise anyone beyond that to do AS after this experience

Cheers pal

User

Posted 04 Nov 2024 at 10:44

Hi Davey,

I'm sorry to hear about the disease progression. It happened to me.

Dec 2020, PSA 5.6, T2a, safely contained, only 2 out of 12 cores Gleason 6 (3+3). I was advised to have AS and agreed.

Aug 2022, PSA 6.6, T3a, 20 out of 24 cores Gleason 8 (3+5) later upgraded to Gleason 9 (4+5).

I was very disgruntled, especially when I discovered that my initial staging was in fact T2c disease, which back then, NICE deemed unsuitable for AS. Plus they'd 'forgotten' to give me a 6 month follow up MRI scan. When I eventually got a follow up scan it was 14 months late!

I spent a year trying to sue them for clinical negligence. I could prove, and they admitted failing in duties of care, but couldn't prove causation. I couldn't prove, on the basis of legal probability (51%) that my disease progression was purely down to their mistakes.

I believe that over 30% of those on AS suffer disease progression, later requiring radical treatment. However, I still believe, if your initial biopsy is accurate and you've got low grade, low volume, safely contained, single lesion disease, and if you are correctly monitored, that AS is a good option.

Edited by member 04 Nov 2024 at 11:21 | Reason: Additional text

User

Posted 04 Nov 2024 at 12:36

Thanks Adrian,

Flipineck that is serious negligence! Sorry to hear that.

And if possible I would still pursue. I spoke with an Oncologist on Friday who did the Biopsy, he mentioned Brachytherapy may be off the table with the new Gleason score, he did say, I'm not an expert on this but....

So i'm hoping he's wrong, i've done some research in the past, and that Gleason didn#'t flag up as problematic for Brachytherapy, but I'll see what the Cancer unit says, as I've asked for immediate referral.

Cheers

Edited by member 05 Nov 2024 at 15:34 | Reason: Not specified

User

Posted 05 Nov 2024 at 13:39

Hi Adrian

User

Posted 05 Nov 2024 at 15:32

Hi Paul,

Totally agree, they are from what I can see, deliberately delaying any treatment, unless extremely serious, for as long as they can. Not to besmirch the many great staff on the Cancer team. It's more likely a cost saving measure, with dire consequences (in some cases ) for the patients.

Cheers

Dave

User

Posted 14 Nov 2024 at 12:55

Hi Everyone,

Just a quick update.

Had my results back from my MRI and Bone scans, and they have come back clear, so although the cancer has increased, at this point in time it remains inside the Prostate.

I don't take anything for granted! Day by day, treatment by treatment.

Will keep everyone posted on what happens next.

Just a quick word to say, What a helpful group this is, I came here first before I even spoke to my good friend on this, so thanks.

Cheers

Dave

Edited by member 14 Nov 2024 at 18:09 | Reason: Not specified

User

Posted 14 Nov 2024 at 19:11

User

Posted 15 Nov 2024 at 11:38

Hi Ned,

Yes, I definitely think there are many that should stay on AS, for me the idea of waiting, with the possibility the Cancer could breach the Prostate is something I wouldn't take a chance on.

The first oncologists game me a frightening possibility, when he gave me my results. It was mid day in the middle of work, totally caught me off guard, , but my regular Oncologist, sat me down, and went through everything, so I was a lot more at ease.

Hopefully there will be a time, when they can indicate slow growing with confidence, as I said, at the minute, lets wait and see is the best they have.

I wouldn't put someone off AS, but for they, that's a very low result from Biopsy, 3 + 3

Cheers

Dave

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