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Coming to terms and... what treatment?

User
Posted 01 Nov 2021 at 04:31

Hello All,

I have been reading many of the differing approaches attitudes and experiences which tap all the emotions for all affected an I truly sympathise with you all having got my reslts just recently. I stupidly thought the clinicians were being cautious and just making sure... even feel a little hoodwinked when on a rare visit to my GP that resulted in several tests which lead to the events that followed. I have had 2 x blood tests to confirm PSA, MRI scan, Urologist consultation with a transperineal biopsy performed, PSMA PET scan.

My scores as follows;

PSA - 3.89 / MRI scan PI-RADS score 4 RH lobe / Gleason 3+4=7 / PSMA PET scan confirms localised RH only / No spread Lymph, Bone, other visible... it was suggested I may have had symptoms build over 18 months without any symptoms. But I havent had any symptoms of any sort! Everything is (or was until biopsy) working fine, and no urinary issues.

Rated T2 Low - Intermediate risk

Suggested treatment - RARP, Brachytheraphy, EBRT veering towards Brachytheraphy...

Still absorbing the results, deciphering it all, trying to become a Urologist and able to make decisions as to what is best is quite difficult. It all came outof the blue and I'm still reeling after the results... its doing nothing for insomnia and I am sure unconfirmed version of some form of ocd!

Am I very lucky to have had so much treatment, should I be worried, is this overkill... as I see lots of people who appear in much greater indescision for far more certain and significant scores. At the ripe old age of 57 I need all the things I currently have and do not want hence my above choice of treatment.

What if.... I did nothing!

 

User
Posted 01 Nov 2021 at 04:31

Hello All,

I have been reading many of the differing approaches attitudes and experiences which tap all the emotions for all affected an I truly sympathise with you all having got my reslts just recently. I stupidly thought the clinicians were being cautious and just making sure... even feel a little hoodwinked when on a rare visit to my GP that resulted in several tests which lead to the events that followed. I have had 2 x blood tests to confirm PSA, MRI scan, Urologist consultation with a transperineal biopsy performed, PSMA PET scan.

My scores as follows;

PSA - 3.89 / MRI scan PI-RADS score 4 RH lobe / Gleason 3+4=7 / PSMA PET scan confirms localised RH only / No spread Lymph, Bone, other visible... it was suggested I may have had symptoms build over 18 months without any symptoms. But I havent had any symptoms of any sort! Everything is (or was until biopsy) working fine, and no urinary issues.

Rated T2 Low - Intermediate risk

Suggested treatment - RARP, Brachytheraphy, EBRT veering towards Brachytheraphy...

Still absorbing the results, deciphering it all, trying to become a Urologist and able to make decisions as to what is best is quite difficult. It all came outof the blue and I'm still reeling after the results... its doing nothing for insomnia and I am sure unconfirmed version of some form of ocd!

Am I very lucky to have had so much treatment, should I be worried, is this overkill... as I see lots of people who appear in much greater indescision for far more certain and significant scores. At the ripe old age of 57 I need all the things I currently have and do not want hence my above choice of treatment.

What if.... I did nothing!

 

User
Posted 01 Nov 2021 at 07:40

You are lucky to have had what is in probably the best standard of care for diagnosis. You now have a really clear picture of your staging.

Your choices now are all about your own risk appetite, yes you can do nothing and risk the disease killing you in maybe 10 years if you are unlucky.

Or you could treat it and die of something else in 30 years having had no side effects from treatment if you are lucky.

"Question is punk, do you feel lucky?"

User
Posted 01 Nov 2021 at 10:02

They have been very good at giving you all the tests. Maybe they haven't used up this year's budget and decided to spend it all on you.

Anyway it is good you have a clear diagnosis. If this were g3+3 I would want to know whether active surveillance is an option. As it is g3+4 that increases your risk slightly. 

If you are keen on avoiding treatment, and I would be (but I'm not you) then speak to the oncologist about active surveillance. If the cancer is not near the edge, it may be able to delay treatment for a few years.

Also ask if HIFU would work, it may not be appropriate for your cancer. It sometimes fails to irradiate the cancer, but it may knock it back so you are having this same discussion in ten years, but having had a side effects free life.

The fact none of these have been mentioned may mean the oncologist has already ruled them out, or he may have just assumed you didn't want to risk advancing cancer and were happier to take the risk of side effects.

If it turns out you are limited to the treatments you have already mentioned, the brachytherapy would be a good option.

 

Dave

User
Posted 01 Nov 2021 at 10:59
You PCa dianosis (as well as can be established) indicates that it is at a relatively early stage so in this respect you have better options than those that have it diagnosed when it is advanced so do you wish to do nothing and risk also being in this position?

Most youngish men like you (in Prostate terms) opt for one of the forms of Prostatectomy as if the cancer is contained, there is a good chance this will eradicate it but saving RT should some mets develop. You do increase your risk of incontinaece for a time and in a very very few cases permanently with surgery. I would hope nerve bundles could be left so you could gradually resume sexual function . RT can do the job with slightly milder side effects except perhaps fot premature fatigue which is increased in intensity and range if HT is included. Also, if you still have a Prostate, even a radiated one, it is still possible for another tumour to go in it or for the RT to initiate another tumour elsewhere many years hence. I suggest you ask whether you will also have HT if you go the RT route.

Do your research and make your decision having carefully considered all the pros and cons of each option in detail.

Good luck and do let us know how you get on.

Barry
User
Posted 01 Nov 2021 at 17:11
John was 50 at diagnosis - if brachytherapy had been available to him he would have snapped their hand off, but he was considered to be 'too young'. Hospitals have a different approach these days and seem willing to offer brachy to a much wider group than in the past. |I think your understanding of your situation and the implications of the different treatments is sound; now it is all about your approach to risk.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 01 Nov 2021 at 07:40

You are lucky to have had what is in probably the best standard of care for diagnosis. You now have a really clear picture of your staging.

Your choices now are all about your own risk appetite, yes you can do nothing and risk the disease killing you in maybe 10 years if you are unlucky.

Or you could treat it and die of something else in 30 years having had no side effects from treatment if you are lucky.

"Question is punk, do you feel lucky?"

User
Posted 01 Nov 2021 at 10:02

They have been very good at giving you all the tests. Maybe they haven't used up this year's budget and decided to spend it all on you.

Anyway it is good you have a clear diagnosis. If this were g3+3 I would want to know whether active surveillance is an option. As it is g3+4 that increases your risk slightly. 

If you are keen on avoiding treatment, and I would be (but I'm not you) then speak to the oncologist about active surveillance. If the cancer is not near the edge, it may be able to delay treatment for a few years.

Also ask if HIFU would work, it may not be appropriate for your cancer. It sometimes fails to irradiate the cancer, but it may knock it back so you are having this same discussion in ten years, but having had a side effects free life.

The fact none of these have been mentioned may mean the oncologist has already ruled them out, or he may have just assumed you didn't want to risk advancing cancer and were happier to take the risk of side effects.

If it turns out you are limited to the treatments you have already mentioned, the brachytherapy would be a good option.

 

Dave

User
Posted 01 Nov 2021 at 10:59
You PCa dianosis (as well as can be established) indicates that it is at a relatively early stage so in this respect you have better options than those that have it diagnosed when it is advanced so do you wish to do nothing and risk also being in this position?

Most youngish men like you (in Prostate terms) opt for one of the forms of Prostatectomy as if the cancer is contained, there is a good chance this will eradicate it but saving RT should some mets develop. You do increase your risk of incontinaece for a time and in a very very few cases permanently with surgery. I would hope nerve bundles could be left so you could gradually resume sexual function . RT can do the job with slightly milder side effects except perhaps fot premature fatigue which is increased in intensity and range if HT is included. Also, if you still have a Prostate, even a radiated one, it is still possible for another tumour to go in it or for the RT to initiate another tumour elsewhere many years hence. I suggest you ask whether you will also have HT if you go the RT route.

Do your research and make your decision having carefully considered all the pros and cons of each option in detail.

Good luck and do let us know how you get on.

Barry
User
Posted 01 Nov 2021 at 13:04

Thank you all,
Very much appreciated responses,. I am (despite having booked a Brachytheraphy appointment for tomorrow!) still feeling 'swept up on a wave' so to speak. I also don't want to irritate the consultant regarding indecision, but we are moving at such a pace... Please don't misunderstanding me I am grateful but my only concerns are if I have missed something. Or realise a severe narrowing of options after Brachytheraphy. The risks I have mostly understood, even the possibility of RARP could potentially possible at a later stage.might still be an option. Has anyone needed RARP tafter Brachytheraphy, clearly only very skilled surgeon will be comfortable doing this, but interested to hear any experiences?

I am concerned given the mention of RARP and better getting  'prostate out' option removes the risk. Given its all about risk and how it tips the balance in favour of one or another.As a 'younger' affected I want to remain as close to my existing normal quality of life, RARP suggests all sorts that will almost certainly not be... or am I misunderstood?
Thanks

Edited by member 01 Nov 2021 at 13:27  | Reason: Typo etc

User
Posted 01 Nov 2021 at 15:10

Is the plan for LDR brachy or HDR brachy. My guess is LDR? but I don't want to guess, when your future is at stake. If it is HDR it is usually accompanied by some HT and EBRT. I would guess that RARP after this would be very difficult.

I was diagnosed at 54. I think an important thing with prostate cancer is to think not in terms of cure, but rather how far down the line can we push this back. It is a very slow disease anyway, so if it can be pushed back till I'm 85 I will be happy. If it only gets pushed back till I'm 75 well I will have to live with that (or more correctly die with that). If I only make 65, I want a refund on all those pension contributions.

 

Dave

User
Posted 01 Nov 2021 at 16:36

Given your early stage diagnosis and unless you have been told differently take your time on a decision. I opted for active surveillance on a similar diagnosis for around 2 years. 

I can't say my quality of life has been impacted in any significant way by the surgery I ultimately had. 

User
Posted 01 Nov 2021 at 17:11
John was 50 at diagnosis - if brachytherapy had been available to him he would have snapped their hand off, but he was considered to be 'too young'. Hospitals have a different approach these days and seem willing to offer brachy to a much wider group than in the past. |I think your understanding of your situation and the implications of the different treatments is sound; now it is all about your approach to risk.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Nov 2021 at 18:34

I have seen and read many really helpful posts, but how does anyone actually make an active decision to live until... if only it were possible. I was of the opinion I have a lot of life, I'm active and want to remain so. I didnt ask to be incontinent or loose sexual function. I have literally had no symptoms prior to this - so I am really pissed... I want it all, not some of it!

Not sure what Brachy will be offered LDR/HDR despite being much more informed nor if I will even agree to it! One thing I am certain of is that removal was a serious consideration until I realised the risks and side effects but more importantly the fact there is no certainty even with removal... so it could return and I am left with very few unpleasant options that have already seriously impacted on my life, it will only get more rubbish.

My head is about to explode so I am off to do something I really enjoy... circuit training. Update tomorrow following consultation - still sat on the fence, right now taking a few deep breaths might be the best thing I can to as I continue to properly evaluate my options.

Thanks everyone

User
Posted 01 Nov 2021 at 18:54

Very sorry to read your diagnosis. Mine was very similar at aged 57  in May this year with Gleason 3+4 T2bN0M0. It is terrifying but you will get through it. Check out my main thread and TechGuys as it may be interesting for you. This is the worst bit until youve made a decision which route to go. Then you will feel better. Its a very personal decision as statistically it appears there is no one right answer. I opted for RARP surgery with a high volume Ninja surgeon just like TechGuy. Our outcomes were similar too. I had nerve sparing and it worked fine and erections are back to normal after 5 months orgasms are better than before, reload time has reduced and I had no incontinence at all to speak of.  I do miss ejaculatory sex but apart from that, unless Im on this site, or thinking about the next blood test, I hardly give it a thought most of the time. For me I just wanted it out and could not face regular treatment with hormones or RT. Tbh I wasnt given much choice because mine was multi focal and both onco and surgeon were unanimous that RARP was the route they would take if they were in my shoes. That was the right choice for me as histology report post op showed 30% of the gland was cancerous and I had got it just in time. Very Good luck to you. You will be fine when youve made the decision and you will have this wonderful support network to help you through it whatever you decide. One big upside for me of the whole process has been realising i need to go from accumulating to spending. Im enjoying life and trying to smell the roses more and appreciate life more too. So its not all doom and gloom. 

User
Posted 01 Nov 2021 at 19:16

Hi there

I am 63 and  had my first PSA test when I was 60 in 2018. I had no symptoms, but because quite a few celebrities had  been advising men to get tested as they themselves had been diagnosed with prostate cancer, I thought why not. Prior to having the blood test, my doctor did his finger up the bum trick and reported that although my prostate was a little larger than normal it felt fine. My NHS PSA came out at 3.58 (a private test a couple of months earlier gave a reading of 6.26) and because  I had no symptoms and the prostate felt normal no action was taken.

I decided to go for testing again this year and in March my PSA was 5.32. A further test a month later and the PSA reading was  5.76. Because of the increase I was put on a fast track pathway and had an MRI scan  ( a 1.5 cm lesion was found and my prostate was deemed to be 55 cc in size) and then a local anesthetic biopsy. The biopsy found that the cancer was all on the right side and was in 3 of the 13 cores taken. It was graded 3 +4 (Category 2). I opted for Active Surveillance, with a further PSA check scheduled for September.

 

I had another PSA blood test on 06/09 and this found that my PSA was now 6.01.  I was, as a result, booked in for a general anesthetic and had this on 16/09. This found that the cancer was all over the prostate and was in 15 of the 19 cores take. The cancer was still graded 3 + 4 (Category 2). A subsequent CT scan confirmed that the cancer was still contained within the prostate. At my follow-up with the consultant, I was told that it was now best that action was taken as I was now more likely to die of prostate cancer rather than of something else.  I was given a choice of surgery or RT. I have, because I have never liked the idea of having RT; because RT usually means that you cannot subsequently have your prostate removed and because I like the idea of -hopefully- the cancer being completely removed, to opt for surgery. This is likely to take place in December- at Addenbrookes.  

Since being diagnosed, I have learnt that some ex-work colleagues and neighbours in my village of 300 people have had prostate cancer and all are alive some 10 or so years after being treated. All  had surgery, though one had to have some follow-up RT treatment as a cancer spot was, 8 years later, found on his pelvic bone.

Tempting as it is to do nothing (I was hoping to be on Active surveillance for a number of years, hoping that a simple injection or pill would then be available to treat and eradicate the cancer), I know that by taking action now I am likely to live longer than if I had decided to do nothing.

User
Posted 01 Nov 2021 at 21:56

Well how do you make an active decision to live to 85? The first thing you have to do is accept you will have to die at sometime.

Whilst drunk at the pub with my friends if the subject of death did come up, my standard reply was, that I will live forever. Not because I have any super powers, but just based on the fact I could not foresee how I would die. So following Sherlock Holmes, having ruled out all known causes of death (remember this sort of reasoning works best when drunk) the only thing left however improbable must be the correct answer, QED immortality. Now I must admit when I am sober, which sadly is most of the time, I can think more logically.

When faced with choosing between many treatments and many possible side effects, you need to be able to balance the quality of life with the quantity. You don't really know the risks and severity of the side effects, so you have to do research and try and put numbers to these. If not actual numbers at least some estimate as to how you would feel about living with them, and you have to balance these against how long you may have to live with them against how long you may live without them (because you opt for no  treatment).

Now putting numbers on the severity of side effects and the risks is really difficult. So you may as well start from the other side of the equation which is what age were you going to die? I will give you a hint, you are not immortal, so no chickening out and saying "never", only I am allowed to use that answer, and only when drunk.

Unless you can at least take some guess as to your life expectancy, trying to measure the side effects against it is impossible, and pointless.

Dave

 
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