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T3a & mulling over options after latest MRI suggest treatment needed

User
Posted 13 Oct 2024 at 08:28

I've been active monitoring for 2.5 years and saw PSA jump to 12.4 in Jan. MRI then suggested no cause for concern and PSA dropped to 8 & 7. Consultant was relaxed, saying no need to do anything for 2 years.

PSA in August back to 12.7.  New MRI & suddenly I'm a T3a needing treatment. Slightly scary.  I've been on private track as I have insurance through work,  though not comfortable with the whole concept really & it feels like they missed something in my cancer's progress.   Anyone know who has the better kit and staff - NHS or private?  Most of the staff seem to be NHS too.

Was more minded for radiotherapy than surgery originally, and am seeing a radiotherapist for initial discussion tomorrow.

Wondering about focal therapy due to lighter side effects but may not be an option now I'm T3.  Anyone gone that route and how was it? 

SABR sounds the least damaging of more conventional radiotherapy options - again anyone done that?

The side effects sound unpleasant - particularly when combined with hormone treatment,  but again a T3 might mean I have to have it. 

Guess I'm after any suggestions for questions I should ask the consultant tomorrow - especally any you wish you'd asked but didn't at the time...

Thanks

Andy

User
Posted 13 Oct 2024 at 10:09

I found the optimum route was NHS with a private wing like London Guys or UCLH. NHS tend to have better budgets and purchasing power so have latest tech. Private wing gives faster access plus there is a crash team on site should it be needed ie post/during surgery. 

The dedicated private hospitals I’ve been to outside of London have had older MRI scanners. Whereas NHS via private access much more modern kit.

 

Edited by member 13 Oct 2024 at 10:10  | Reason: Not specified

User
Posted 14 Oct 2024 at 08:55
Thanks all,

Have only just seen the later replies. To expand a little more on the sequence, I had a template biopsy about 8 months after my initial one (twice as many cores- fortunately under anaesthetic). That because my consultant was concerned that my initial MRI looked a s if the tumour was near the capsule wall. That came back reassuring and he downgraded the cancer to a Gleason 6. It seems to me the

MRI done in around Feb this year was perhaps not as thorough as it might have been - the one last month certainly took longer that my initial NHS one or the second private one.

In answer to your question Mangia - I'm 66 and in good general health. Carrying a little belly fat I should shift but have a healthy diet and am a utility cyclist (around town and to social activities, but not more than 10-15 miles a week currently) and play badminton once a week. What's Da Vinci RP please?

What's striking is how the post op histology for most of you who've had surgery, has revealed a higher grade tumour than previously thought.

Off to home office/work now - will review any further responses this afternoon before heading to meet the radiologist. Cheers, Andy

User
Posted 14 Oct 2024 at 13:51

Originally Posted by: Online Community Member
AS should be proactive and not just reactive to PSA results. Had I not chased them up my disease could have easily become metastatic.

 

I have to agree. I was told by the NHS that my PSA rises didn't really warrant being treated yet, and I was ONLY T2 so I needn't worry. I insisted on being referred to a private surgeon. My post surgery pathology showed that I had progressed to T3a, and I had tertiary pattern 5 in one area. If I had gone along with the NHS and continued on AS, I could be in all kinds of trouble by now.

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User
Posted 13 Oct 2024 at 08:50

T3 means serious radical treatment is required.

Active surveillance should stress ACTIVE 2 years was way to long.

Private treatment has all the good kit but it lacks oversight and tends to be one specialist rather than the large MDTs you get on the NHS.

So why not do both, make sure your private specialist is on the NHS too And takes your case to the MDT meetings? That's what mine did.

Edited by member 13 Oct 2024 at 09:06  | Reason: Not specified

User
Posted 13 Oct 2024 at 09:27

Hi Andy.

Sorry that you've had to join the Club, but welcome to the forum mate.

My story is very similar to yours. I was diagnosed in Dec 2020, T2a, Gleason 6 (3+3), PSA 5.6. I was advised to go on active surveillance, which I did.

Although my PSA remained relatively stable for almost 2 years, a follow MRI revealed disease progression, confirmed by a second biopsy showing T3a, extraprostatic extension, Gleason 8 (3+5), PSA 6.6.

I had robotic surgery in Feb 2023. Post op histology T3a, Gleason 9 (4+5).

Since the op my PSA has been undetectable, touchwood. Incontinence issues for only 6 months. ED is still a problem but can get erections with Invicorp injections.

I don't think that you'll be eligible for SABR. As far as I'm aware at present it's used for low grade, confined PCa, but I maybe wrong.

I'd be asking what are the likely side effects of any treatment and what are the chances of recurrence.

As for private or NHS? As you have private medical insurance I'd probably go along that route. I do think the NHS has already let you down by not ensuring your active surveillance was actively monitored.

Best of luck with whatever you chose. Please keep us updated.

Edited by member 13 Oct 2024 at 09:50  | Reason: Additional text

User
Posted 13 Oct 2024 at 09:54
I think it was the private AS that let him down?
User
Posted 13 Oct 2024 at 10:09

I found the optimum route was NHS with a private wing like London Guys or UCLH. NHS tend to have better budgets and purchasing power so have latest tech. Private wing gives faster access plus there is a crash team on site should it be needed ie post/during surgery. 

The dedicated private hospitals I’ve been to outside of London have had older MRI scanners. Whereas NHS via private access much more modern kit.

 

Edited by member 13 Oct 2024 at 10:10  | Reason: Not specified

User
Posted 13 Oct 2024 at 10:39

I was T3a, although classed as very high risk due to PSA of 58.

I went for HDR boost, a protocol where half the radiotherapy is done as external beam (16x3Gy or 23x2Gy fractions/sessions), and the other half as a single 15Gy HDR brachytherapy fraction/session. This is done with hormone therapy. My #1 priority was getting rid of the cancer first time, and my #2 priority was minimising side effects. There is an option with this treatment to also treat all the pelvic lymph nodes at a low dose, on the basis that even though no mets were found in them, that's the next place mets would likely go, and if there are tiny mets there already which didn't show on the scan (micro-mets), this will zap those too. I took this option too.

HDR boost is a good protocol in terms of treatment dose verses side effects. It gets a high effective dose into the prostate (and can also into the seminal vesicles T3b, but that's not relevant in your case), while also covering the area outside the prostate at a lower dose. However, due to the lower dose outside the prostate which can still mop up micro-mets, it seems to have fewer side effects considering the higher effective dose into the prostate than external beam alone can do.

It might be that with only one high risk factor in your case (T3a), this might be considered over-kill in your case, and that's something to discuss with the oncologist. I had two right risk factors (T3a and PSA level).

User
Posted 13 Oct 2024 at 12:03

Originally Posted by: Online Community Member
I think it was the private AS that let him down?

My apologies. 🙈

User
Posted 13 Oct 2024 at 16:02

I don’t think anyone let him down. He had two years of a great quality of life with no ED or incontinence issues or other side sides from hormone treatments while on AS. In Jan an MRI was immediately ordered when the PSA jumped and was clear. Then his PSA was monitored to see if it stayed up or it could have been a bad PSA number and then the PSA fell twice giving credence that the Jan PSA number might have been bad. Then August (January to August with two PSA drops is not a long time) his PSA rises back and another MRI is immediately ordered and it is found. Sounds to me like AS worked. It may have barely left capsule with no lymph no involvement. A PSMA Pet should be ordered next, also genomic Decipher testing. Until surgery mine was supposed to be contained in the capsule, but during surgery I had positive margins, but fortunately my Surgeon sent the tissue to Pathology while I was on the operating table under anesthesia and so he was able to go back in and cut more and final pathology was negative margin.

User
Posted 13 Oct 2024 at 16:08

I was diagnosed T2b, G3+4, with low PSA and selected surgery that was performed in Nov. 2021. Part of my reasoning was that I believed the cancer to be contained in the prostate and also that if I had a recurrence I would then be able to have salvage radiotherapy  Post op histology graded me at T3a, G4+3 and here I am, nearly three years later, just starting salvage radiotherapy and HT. Sod's Law prevails. Wouldn't it be wonderful if we could have the post op histology before going under the knife? But you make your choice with information to hand. 

All my treatment has been NHS and I cannot fault it. Prior to retirement, I used private health insurance and whilst carpets and free biscuits are fine, I cannot count all the times I waited well  past my appointment time for the consultant/surgeon to rush in red faced and flustered because his NHS list overran. 

Peter

User
Posted 13 Oct 2024 at 16:30

Andy,

i am considered pT3a after my surgery in August. I was told that although my Extraprostatic  Extension (EPE) was found during surgery if seen earlier it still would not have necessarily ruled out surgery. Depending how far out positive margins on the side might have gone out could have impacted nerve sparing on that one side during surgery. My final Gleason after surgery is 7 (4+3), and awaiting PSA at end of month. I ended up with negative margins and my Surgeon is optimistic about not needing adjuvant Radiation Treatment (ART) plus hormone treatment. I certainly still have Salvage Radiation Treatment (SRT) available if needed. Although salvage Surgery after radiation can be done, it is much more difficult and usually only certain skilled surgeons familiar with it and not many will fo it. That is also why I chose Surgery to have the salvage radiation in reserve. Good luck 

User
Posted 13 Oct 2024 at 16:43

Peter, sounds similar. 
One thing to remember many undergo radiation therapy and hormone treatment first, then still find themselves back two years later and looking at a very difficult salvage surgery or more Radiation and hormone treatments. If you are to say I should have gone first with the Radiation then because I am needing it anyway now, does not mean if you had done that you would still not be here, saying I should have had surgery first. I know it is always hard not to second guess decisions, but once made at the time that a person feels  is right, I believe always stick with it or it can just eat away whether the decision was right, but a person also will never know what bad things could have occurred likewise if they made the opposite decision. I am happy I was under the knife, recovery time to getting on with my life after surgery was only two weeks. 

User
Posted 13 Oct 2024 at 16:54

Spot on, Ned.

Hope all continues to go well with you. 

Peter

User
Posted 13 Oct 2024 at 17:34

Originally Posted by: Online Community Member
also genomic Decipher testing.

This is a US-only test.

User
Posted 13 Oct 2024 at 18:00

Hi Andy,

 

I'm in the US, but my PC was at a very similar stage to yours. My PSA on initial diagnosis (last May) was also exactly 12.7. My MRI showed the cancer had broken through the capsule and described "Gross EPE" along the right side of the prostate with other tissues clear (T3aN0M0). My biopsy came back Gleason 9 (4 + 5). I ended up having DaVinci RP here in New York and now at 7 weeks out, I'm 99.9% dry, am able to get erections unaided and my first post surgery PSA just came back at <0.02. In short, I'm very happy with my results.

 

Of course surgery has higher risks of ED and incontinence than radiation but it is nice to know that if recurrence occurs down the road following it, you still have radiation treatment available to you. How old are you? How is your general health?

 

Also, just to mention, I did meet with a radiologist as well prior to deciding between surgery vs radiation. As Adrian56 mentioned, I was told if I did go with radiation treatment it would have to be the wider beam, (25??) session type. I was told I would NOT be a candidate for the higher dose 5 day treatment (Cyberknife) (which I believe is SABR).

User
Posted 13 Oct 2024 at 18:54

Andy,

There are three different versions of genomic testing here that are primarily used. Maybe you have one of them. They are considered so important here that Medicare has approved to pay for them. If you don’t have any of these that possibly due to the importance of Genomic testing and learning whether a patient’s cancer characteristics are low, immediate or advanced there is a different type used over there in determining treatment decisions.

The prinary ones used here are:

Decipher

Prolaris

Oncotype

User
Posted 13 Oct 2024 at 18:59

Originally Posted by: Online Community Member
I don’t think anyone let him down. He had two years of a great quality of life with no ED or incontinence issues or other side sides from hormone treatments while on AS.

We'll have to agree to disagree on this one Ned.🙂

According to the National Institute for Health and Care Excellence (NICE) guidelines, a multiparametric MRI (mpMRI) is recommended for people with prostate cancer who are being managed with active surveillance at 12–18 months.

It was two and a half years, before Andy had his follow up MRI. Maybe it wouldn't have shown disease progression, but that doesn't alter the fact that it was at least a year later than it should be. Active surveillance isn't just about PSA checks, which we all know can be unreliable.

In my case, whilst I was AS it had been recommended that I had a 6 month follow up MRI. They forgot to book it. When I eventually got a follow up scan, it was 14 months late, and clearly showed significant disease progression. AS should be proactive and not just reactive to PSA results. Had I not chased them up my disease could have easily become metastatic.

 

 

Edited by member 13 Oct 2024 at 19:08  | Reason: Additional text

User
Posted 13 Oct 2024 at 19:37

Started AS in 2017, didn't have an MRI until 2021, after my PSA had shown a consistent if gradual rise. 

So, not very active but like many others, I didn't know better at the time. 

User
Posted 14 Oct 2024 at 08:32
Thanks Adrian, Appreciate your prompt response and candour. Will see what the radiologist has to say later today. Were you treated monitored on NHS or private.
User
Posted 14 Oct 2024 at 08:55
Thanks all,

Have only just seen the later replies. To expand a little more on the sequence, I had a template biopsy about 8 months after my initial one (twice as many cores- fortunately under anaesthetic). That because my consultant was concerned that my initial MRI looked a s if the tumour was near the capsule wall. That came back reassuring and he downgraded the cancer to a Gleason 6. It seems to me the

MRI done in around Feb this year was perhaps not as thorough as it might have been - the one last month certainly took longer that my initial NHS one or the second private one.

In answer to your question Mangia - I'm 66 and in good general health. Carrying a little belly fat I should shift but have a healthy diet and am a utility cyclist (around town and to social activities, but not more than 10-15 miles a week currently) and play badminton once a week. What's Da Vinci RP please?

What's striking is how the post op histology for most of you who've had surgery, has revealed a higher grade tumour than previously thought.

Off to home office/work now - will review any further responses this afternoon before heading to meet the radiologist. Cheers, Andy

User
Posted 14 Oct 2024 at 13:51

Originally Posted by: Online Community Member
AS should be proactive and not just reactive to PSA results. Had I not chased them up my disease could have easily become metastatic.

 

I have to agree. I was told by the NHS that my PSA rises didn't really warrant being treated yet, and I was ONLY T2 so I needn't worry. I insisted on being referred to a private surgeon. My post surgery pathology showed that I had progressed to T3a, and I had tertiary pattern 5 in one area. If I had gone along with the NHS and continued on AS, I could be in all kinds of trouble by now.

User
Posted 14 Oct 2024 at 21:01

An interesting consultation.  The oncologist felt my latest MRI and biopsy didn't suggest T3a but that cancer is still contained within the capsule but is gonna get views from his multi-disciplinary team and we'll meet again in 3 weeks. 

Depending on the view of his SMDT, gut feeling was that on balance there are some signs of progression so make use of my private insurance while I have it to go for MRI LINAC (SABR) treatment without need for hormone treatment. 

I might investigate focal therapy but I have cancer in more than one part of the prostate, so much of it would need to be zapped anyway, so perhaps just irradiate the whole thing in the least harmful way possible (in UK), and hopefully kiss goodbye to PC for good...

User
Posted 15 Oct 2024 at 05:41

Originally Posted by: Online Community Member
Depending on the view of his SMDT, gut feeling was that on balance there are some signs of progression so make use of my private insurance while I have it to go for MRI LINAC (SABR) treatment without need for hormone treatment.

Hello again mate.

If they decide that you are suitable for this treatment, to me, that would be a good path to take. 

In answer to your question, all my treatment has been NHS. Generally, I have been very satisfied and impressed by the service. However, during COVID, one or two mistakes were made with my active surveillance, which in my opinion, allowed my disease to progress unchecked, leaving me at more risk of recurrence.

Da Vinci is basically keyhole robotic prostatectomy.

Edited by member 15 Oct 2024 at 05:48  | Reason: Additional text

User
Posted 15 Oct 2024 at 11:46

It's still early days for SABR as the primary treatment.
I found this from 2018, says it's much cheaper than other External beam treatment because it's short duration. It also gives similar doses to Brachytherapy, but it also has potentially worse toxicity.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043737/#:~:text=With%20a%20median%20follow%2Dup,and%20high%2Drisk%20prostate%20cancer.

 

User
Posted 15 Oct 2024 at 12:20

Hello mate.

As you say that was was from 2018.

Since then, after trials, it's being introduced as an approved treatment. In fact, there is research now being conducted to see if its safe enough to have only 2 SABR sessions for low grade PCa and further research testing it on higher grade cancer. 

It seems to be advancing very quickly, probably because it is much more cost efficent.

I started a conversation on the two session trial yesterday.

https://community.prostatecanceruk.org/posts/t31027-Recent-research-into-SABR-being-effective-after-only-two-sessions-s#post300684

 

Edited by member 15 Oct 2024 at 12:25  | Reason: Additional text

User
Posted 15 Oct 2024 at 16:41

I had private robotic prostatectomy 13 years ago. The main advantage was that I was able to pick the consultant who had excellent reputation in robotic surgery. The aftercare was terrible, be it in a private bedroom and very 'glossy' hospital. Private hospitals are not interested in post-surgery issues. Fortunately my consulted was very kind and devoted to his work and I had direct contact with him. In the past few years the NHS has managed to trained many urologist in robotic surgery. 

 '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

 

 

 
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