Treatment for Gleason 9 Localised

User

Posted 18 May 2024 at 09:32

Hi Again

Could I ask an opinion about treatment, as I’ve said it is localised and the specialist nurse went though biopsy.

one 16mm tumour mid left gland

no other cancer detected other than above

4 +5 no cribriform

nowhere near outer prostate

No inditcation of SV or node invasion

She said husband only had one high risk element , the GS9 and this was def curable

he did one of the sheets about how your urine is is getting up at night flow etc

looking at it she said he could have brachy and HT or RP but the Brachy could make the problems he had worse so felt RP was prob best

I asked about if he would HT after or any radiation and she said no not if all stayed same after RP

Im sorry for all the detail but I do read that some Gleeson 9 research suggests other belt and braces treatment after RP

i just wondered what you folks think about this

best wishes

User

Posted 19 May 2024 at 01:48

Originally Posted by: Online Community Member

I don’t know if I’m misunderstanding some reading I’ve done but I just thought being G9 they would do some extra therapy?

High G score, high PSA and high TN or M numbers all increase the risk. Adding extra treatments would possibly improve outcome, but where would you draw the line? For example you could add chemo, but if you think the tumour is organ confined and will be cut out, chemo would have no benefit, only unwanted side effects.

If I were a surgeon operating on a G6 I might think "it doesn't matter if I miss a bit because this will never spread anyway" whereas with a G9 I may think "I can't risk leaving any behind so I will take a few nerves and cut a bit higher into the bladder neck just in case".

Similarly with RT they may say, we'll go for 37 factions rather than 20 and risk a bit of damage to the bowel, rather than risk missing any local spread. Or with HT they may say 36 months rather than 18 months.

So a higher risk patient may not get a whole extra therapy, but the therapy he does get may be more aggressive.

Edited by member 19 May 2024 at 01:49 | Reason: Not specified

Dave

User

Posted 22 May 2024 at 19:28

Originally Posted by: Online Community Member

nowhere near outer prostate

No inditcation of SV or node invasion

Margot,

These are the positive things to concentrate on.

My cancer, although ultimately as aggressive as your husbands, was never as well contained within the prostate as his, yet it still took nearly three years to breach the capsule. I know how frustrated and anxious you must be feeling but it would appear that a delay shouldn't be a problem.

In the meantime, although you shouldn't have to, keep pushing for the necessary steps to be taken to ensure surgery. Unbelievably, as the patient I had to organise liaison between anaesthetists, cardiology, urology and oncology to finally get approval for my operation.

Edited by member 22 May 2024 at 19:32 | Reason: Typo

User

Posted 18 May 2024 at 13:42

Hi Margot.

You are such a good wife and obviously care so much about your husband.

I was G9 with extraprostatic extension had robotic surgery and to date, 15 months later, my PSA is undetectable. I've had no additional treatment.

I think your hubby will be safe just having the op. If things go awry he can then get salvage treatment of RT and HT.

User

Posted 18 May 2024 at 13:48

Thanks Adrian I love him to prices I married him at 18 and at 55 love him even more! I just want the best possible outcome from this hideous disease!
thank you for your reply it helps to hear from those who have been there

User

Posted 18 May 2024 at 14:11

This thread started talking about brachy, but ended up talking about all options. It is a good place to start.

https://community.prostatecanceruk.org/posts/t26986-Can-t-understand-why-anyone-would-choose-surgery-over-Brachytherapy--I-must-be-missing-something

I was G9 with extra prostatic extension and cancer throughout prostate. So for me surgery was ruled out. 6 years after brachy I seem fine. Either treatment for your hubby will give about a 70% chance of being cancer free.

So I think your real decision has to be which side effects are more tolerable. I am inclined to think the side effects of surgery are more likely to be worse than RT and HT. Some people would argue the side effects of HT are worse than those of surgery.

I don't attach much weight to the have surgery and if it doesn't work have RT argument. If RT works as a salvage treatment it would have worked as a primary treatment, so you have put yourself through a completely pointless surgery, with no advantage and only side effects. Of course you don't know whether either treatments will work until after the event so you can only be certain of making the best decision now if you can predict the future.

Dave

User

Posted 18 May 2024 at 14:13

Originally Posted by: Online Community Member

Thanks Adrian I love him to prices I married him at 18 and at 55 love him even more!

Thats lovely. This journey will, if possible, bring you even closer together.

As you're obviously aware no cancer treatment fits all. However, in my case, it appears RT and HT would not have altered my to date outcome, apart from me having to deal with the side effects of the additional treatment.

User

Posted 18 May 2024 at 19:13

Hi Margot I was diagnosed Gleason 9 with psa off 24.9 four and a half years on psa 0.01 I had 37 fraction's off radiotherapy and 18 months of hormone therapy working all the way through treatment more or less back to normal now only minor side effects there is light at the end of the tunnel gaz 👍

User

Posted 19 May 2024 at 01:24

Adrian

Yes, we'll give the surgeon the benefit of the doubt and say it is a combination of all four, and not that he needed to get one more operation in before the end of the financial year, so he could collect his bonus.

Dave

User

Posted 22 May 2024 at 11:49

Hi again Margot.

I've given my diagnosis above.

I was scheduled for surgery Nov 2022, all gowned up, cancelled due to lack of beds. Rescheduled for Dec 2022, all gowned up, cancelled due to anaesthetist concerns re heart condition and suitability for surgery.

Discussion for 4 months between anaesthetist, surgeon and cardiologist regarding suitability for surgery.

Feb 2023, had the op, no cardiac problems.

April 2023, minor heart attack, as if just to prove the anaesthetist concerns.😁

This 4 month delay apparently caused no detrimental affect to me, so they say. Yet, it was by far the worst part of the process, psyching myself up for the op three times, instead of just the once.

I'm sure everything will be fine.........in the end.

Keeping pushing for action. I did.

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User

Posted 18 May 2024 at 13:42

Hi Margot.

You are such a good wife and obviously care so much about your husband.

I was G9 with extraprostatic extension had robotic surgery and to date, 15 months later, my PSA is undetectable. I've had no additional treatment.

I think your hubby will be safe just having the op. If things go awry he can then get salvage treatment of RT and HT.

User

Posted 18 May 2024 at 13:48

User

Posted 18 May 2024 at 14:11

This thread started talking about brachy, but ended up talking about all options. It is a good place to start.

https://community.prostatecanceruk.org/posts/t26986-Can-t-understand-why-anyone-would-choose-surgery-over-Brachytherapy--I-must-be-missing-something

Dave

User

Posted 18 May 2024 at 14:13

Originally Posted by: Online Community Member

Thanks Adrian I love him to prices I married him at 18 and at 55 love him even more!

Thats lovely. This journey will, if possible, bring you even closer together.

User

Posted 18 May 2024 at 14:26

Originally Posted by: Online Community Member

I was G9 with extra prostatic extension and cancer throughout prostate. So for me surgery was ruled out.

Afternoon Dave.

We had a very similar diagnosis. Yet they deemed surgery was okay for me. I've often wondered what criteria they use to eliminate it as an option? It seems to vary from surgeon to surgeon.

User

Posted 18 May 2024 at 14:49

Hi Dave

the specialist nurse seemed to think Brachy would make his current urinary symptoms worse?
one thing that nobody has spoke to him about is if the surgery would take the nerve bundles etc

i think we were so elated at the bone scan results we ran out of Christie’s and rang the nurse at our local hospital to book him in for RP maybe a bit to quickly but who knows !

as you say that’s exactly what we were told 70 to 80% successful.
I don’t know if I’m misunderstanding some reading I’ve done but I just thought being G9 they would do some extra therapy?
I hope we’ve picked the correct route but if it gets him cancer free I know I can live with any of the potential side effects and my OH said he thinks he could.

User

Posted 18 May 2024 at 15:35

Hi Margot

Your husband's diagnosis is similar to mine, cancer confined to the prostate with clear margin and some urinary problems (prostatitis, frequency, urgency), except that my Gleason score was 7 (4+3, 3+4). I had prostatectomy 12 years ago and it appears to have been curative but we keep our fingers crossed! Whilst I would not advise anyone about their choice of treatment, if you are thinking of prostatectomy, givens his diagnosis, provided he does not have any other health issues prostatectomy is not a bad choice. Of course there are risks of incontinence and ED which are impossible to predict. We took those risks, I am 99.9% continent and suffer from ED which is more due to my age rather than the surgery. We have found ways of dealing with those side effects in our intimate relationship. We think we made the right choice but then hindsight is a wonderful skill! Whatever treatment you choose be confident and I wish you both luck.

'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 18 May 2024 at 15:50

Thank you for reply it is good to hear other people’s experiences, knowledge is power. There is certainly a lot to know about PC and its treatments and side effects.
Long May your good health continue.

User

Posted 18 May 2024 at 17:52

Hi Adrian, did they know about EPE before surgery or was it only discovered post surgery? That would make a difference. 10 our of 11 of my biopsy cores had 100% cancer. The other one had 95% cancer. My PSA was 25. So my cancer was most certainly not a tiny little tumour which they could expect to cut out successfully.

Dave

User

Posted 18 May 2024 at 18:49

Hi Dave.

Thanks for responding.

My scan in Aug 2022, 6 months pre op, indicated EPE, radilogically T3a. 20 out of 24 cores more than 40% cancerous, Gleason 9(4+5). The later histology indicated that 25% of the prostate was cancerous.

What always concerned me was that the surgeon who did the op classified the cancer, pre op, as T2c, yet the MRI clearly showed EPE, T3a

I'm just a bit perplexed as to when it's deemed too risky to proceed with surgery? Is the decision made on cancer staging, volume of disease, Gleason score, PSA level or a combination of all four.

I guess it's probably the latter.

Your cancer, although the same Gleason as mine, seems to have had more volume and was more wide-spread, and that's why surgery was not deemed an appropriate treatment?

User

Posted 18 May 2024 at 19:13

User

Posted 19 May 2024 at 01:24

Adrian

Dave

User

Posted 19 May 2024 at 01:48

Originally Posted by: Online Community Member

I don’t know if I’m misunderstanding some reading I’ve done but I just thought being G9 they would do some extra therapy?

So a higher risk patient may not get a whole extra therapy, but the therapy he does get may be more aggressive.

Edited by member 19 May 2024 at 01:49 | Reason: Not specified

Dave

User

Posted 22 May 2024 at 11:07

So following on from the appt about Surgery v BT where it was thought RP was the best option!
I rang the secretary today to ask where OH is upto as his 62 days from referral to treatment is up on Friday.

I was told that all listing for June had now been made and it would be July!
I was upset at this as this would be wildy outside of the guidelines so the secretary said she would speak to consultant given his G9 BUT then said is OH over weight I said his BMI would be about 32 and he has sleep apnea but this was spoken about with Christie they said should not be a problem and the surgeon mentioned it in his letter to our GP just saying he is at slightly higher risk of anaesthetic?
I’m now in a spin that they will say no surgery and if they do allow surgery but not until July will the cancer have spread from the current T1 stage? Should he be on HT ?
Any thoughts or advice welcome please?

User

Posted 22 May 2024 at 11:49

Hi again Margot.

I've given my diagnosis above.

Discussion for 4 months between anaesthetist, surgeon and cardiologist regarding suitability for surgery.

Feb 2023, had the op, no cardiac problems.

April 2023, minor heart attack, as if just to prove the anaesthetist concerns.😁

This 4 month delay apparently caused no detrimental affect to me, so they say. Yet, it was by far the worst part of the process, psyching myself up for the op three times, instead of just the once.

I'm sure everything will be fine.........in the end.

Keeping pushing for action. I did.

User

Posted 22 May 2024 at 14:11

Hi Adrian

My worry is when they say it won’t matter how do they know! Surely a cancer has to be contained one day and another it is outside the prostate?
I know that we cannot pinpoint the date a cancer moves forward but given the surgeons grim atttitude to his G9 as I’ve previously written about surely nearly 5 months from Initial high PSA is to long to wait for a “very high risk” cancer.
I now worry they will start rediscussing his case at MDT when I feel if they thought RP would not be possible because of sleep apnea then we need not of had the extra step of being spoken To about the RPvBT? And then being referred back to surgeon.
I just feel anxious that to us it’s so urgent but in the system it appears time is not an issue.
thanks again

User

Posted 22 May 2024 at 14:40

Originally Posted by: Online Community Member

Hi Adrian

My worry is when they say it won’t matter how do they know! Surely a cancer has to be contained one day and another it is outside the prostate?

The answer is, they dont know. I've always believed that my treatment was appalling. It happened during Covid, but still, to me, that didn't excuse some of the delays and omissions that occurred during my treatment.

I sought legal advice, in fact the concerns I had are still being investigated. However they've got you you by the short and curlies. They quote NICE guidelines, when they support them, and totally disregard them when they don't. All I can advise is keeping chasing them up, and kept an accurate record of those prompts and their responses.

Whilst on AS, my follow up MRI scan was delayed by 14 months. They say that made no difference. How can they say that? But they do, and I cannot prove them wrong.

Edited by member 22 May 2024 at 14:42 | Reason: Typo

User

Posted 22 May 2024 at 15:20

That is dreadful Adrian. That is one heck of a delay!
Always being told to get checked early but what is the sense in leaving you months or even years before they treat you!
At the moment OH is told upto now curable and no sign of any disease outside prostate! How on earth I would feel if there is more delay and all that changes as he is G9.
Just so sad and frustrated at it all 😞

User

Posted 22 May 2024 at 15:21

Hi Margot,

I sympathise with your frustration, time seems to stand still between initial diagnosis and any form of treatment.

With regards to HT, it's not usual in the UK for men to be given HT if RP is planned, Surgeons say that the HT "fuzzies" the cancer and makes it harder to clearly identify. The exception to this was during Covid when men were put onto HT as they were likely to be subject to very long waits for surgery.

Have they mentioned a PSMA scan?

This is the current gold standard for identifying Pca outside of the prostate and I think many hospitals would insist on one in a G9 (4+5) patient before performing surgery.

Edited by member 22 May 2024 at 15:22 | Reason: Not specified

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