I need advice

I need advice

User

Posted 05 Apr 2019 at 13:51

Originally Posted by: Online Community Member

I have done a bit of reading up on this and it seems there's different types/or approaches to nerve sparing surgery.I read recently Mani Menon's website about precision prostatectomy which was interesting, but it doesn't look like this is available in the UK - anyone know why not?

All Mani is talking about is nerve sparing, which is common practice in the UK unless the diagnostics suggest that the tumour is close to the edge, with the potential to leave a bit more margin on one side in some cases. It is smoke and mirrors - the vast majority of recurrence cases are linked to positive margins anyway so leaving more of the margin is a high risk strategy best used on men who probably didn't really need surgery.

There have been trials just to remove the lesion identified at biopsy or MRI but the outcomes were pretty awful - generally speaking, a man with cancer in his prostate will have many tiny clusters rather than one big tumour. If you are interested in just having part of your prostate treated, you would be better talking to an oncologist about focal treatment such as cyber-knife, green light therapy, or perhaps travel to the US for FLA as another member here has done. There is also HIFU and proton beam therapy but again, the research data suggests these are great salvage treatments but not so reliable as a primary treatment.

Edited by member 05 Apr 2019 at 13:51 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Apr 2019 at 13:56

The side-effects of my prostatectomy have not been ‘pretty awful’.

The operation was pretty quick, often only an overnight stay, short recuperation, but left with erectile dysfunction, a 2” shorter penis, and very diminished dry orgasms. But the upside is no cancer.....for now. And a 98% chance of surviving for 15 years by which time I will be dead of something else.

I reiterate, put off any treatment as long as you and your medics are comfortable with, and enjoy as many ejaculations as you can in the meantime.

If you want to check on statistics, the Nomogram all the medics seem to use is the one from the American Memorial Sloan Kettering hospital, where you key in your details and it tells you when to book your wake down the pub.......

https://www.mskcc.org/nomograms/prostate/pre_op

You might note that I am not phased by my cancer diagnosis, and am carrying on with living. I hope you can do the same.

Cheers, John.

Edited by member 05 Apr 2019 at 13:58 | Reason: Not specified

User

Posted 05 Apr 2019 at 13:59

Mani Menon has pinched my orange analogy! I should charge him a finder's fee 😱😂 And call me daft, but isn't his amazing 3D biopsy technique just a template biopsy? 🤷‍♀️

http://manimenon.com/menon-precision-prostatectomy/

I can't find any dates on the website so am wondering how old the information is?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Apr 2019 at 14:04

Originally Posted by: Online Community Member

If you want to check on statistics, the Nomogram all the medics seem to use is the one from the American Memorial Sloan Kettering hospital

Not strictly true - most nomograms used in the UK are based on the MSK one but have been amended / adjusted to reflect local data. Outcomes in England are generally worse than in America anyway, and outcomes in some regions (North East, Midlands, West Yorkshire) are worse than in Surrey, for example, and far worse than in New York. Urologists will have access to their local nomogram and while it is okay for a patient to look at the MSK one, it needs to be kept in mind that the result will probably be a tad optimistic.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Apr 2019 at 15:28

Thanks,

Now beginning to quickly realise that I need to read alot more and ask more questions....jeesh...

Chris, I haven't spoken to an Oncologist yet no - I need to. The only thing that was swaying me away from that option was that the urologist said, that if you need RP after that, it is a much more difficult op and more difficult to nerve spare - as either Radio option, basically cooks it in place (that's my take on it). And there was no desernable differnece in the stats for External Bean vs Surgery wrt side effects - just might take a little longer, post EBRT, for side effects to emerge.

Bollinge, sound reasoning there, thank you and hope things start improving for you soon. Don't like the sound of the reduction - never heard that before (have little enough as it is!).

What the hell is a nomogram? forgive me folks, your alot more informed than I am currently, per above.

Lyn - thanks, I didn't fully understand your first post. So to confirm, your saying that a grade 3 cell/area will not and cannot change into a higher grade. But that there may be, currently undetectable or missed, higher grade cells in the prostate (4 and above) that may be picked up at a later date should they grow? Every days a school day with this....

Thanks again

User

Posted 05 Apr 2019 at 15:36

Matron, strange, then, that when my local oncologist turned his MSK recurrence / mortality prognostication on his computer screen to me, and I simultaneously turned my iPad to show him, that the page results were identical.

Neither he nor I had factored in any regional or continental bias.

O.P. - Bear in mind fifteeen-year Nomogram forecasts are based on up to fifteen-year old medicine, which in this field is advancing apace.

Cheers, John.

Edited by member 05 Apr 2019 at 15:39 | Reason: Not specified

User

Posted 05 Apr 2019 at 16:00

Originally Posted by: Online Community Member

when my local oncologist turned his MSK recurrence / mortality prognostication on his computer screen to me, and I simultaneously turned my iPad to show him, that the page results were identical.

Neither he nor I had factored in any regional or continental bias.

Doesn't surprise me - despite your assertions to the contrary, most urologists don't rate him that much. Our Mr P says your man just employs a massive marketing machine 🤣

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Apr 2019 at 16:10

Originally Posted by: Online Community Member

So to confirm, your saying that a grade 3 cell/area will not and cannot change into a higher grade.But that there may be, currently undetectable or missed, higher grade cells in the prostate (4 and above)that may be picked up at a later date should they grow?

The number indicates how differentiated the cancer cells are. A 1 is normal, while a 3 is quite distorted and a 5 is very distorted. Your biopsy samples were looked at under a microscope and then the cells were graded from 1 - 5. The score you are given represents (the first number) what was seen most commonly under the scope and (the second number) what was the next most common ... in other words, for a G(3+3) almost all the cancerous cells were quite distorted but not very distorted. If you had been given a G(3+4) then the most common pattern would have been 3 but you also had some that were a 4. If you had been given G(4+3) then most common pattern was a 4 but also some 3. If they had spotted any 5 in your samples, they would have given you a result of G(3+3) with tertiary 5, to alert the consultant to the fact that while only a minority there is evidence of a much more aggressive cell pattern that could become a problem later.

I don't think scientists know for sure but they don't believe that pattern 3 evolves over time and becomes less well differentiated to end up being a 4 or a 5. It is more likely that tiny patterns of 4 or 5 are not identified at biopsy so while the 3 shuffles along doing its own thing quite slowly, the 4 or 5 can replicate faster and eventually become the most common pattern. That's not to say that a G6 (3+3) never spreads - we have had men on here with metastatic G6 but it is very rare.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Apr 2019 at 16:10

Matron, Matron, I said and meant my local, run-of-the mill NHS oncologist, not my brilliant urological surgeon, Professorwhocannotbenamedhere, whom you have had a downer on since I first ventured onto this site, despite you never meeting him or receiving his ministrations.

Try and get with the programme.

Cheers, John.

Edited by member 05 Apr 2019 at 16:11 | Reason: Not specified

User

Posted 05 Apr 2019 at 17:37

To my understanding, a Nomogram is produced following results of studies of men that have PCa with various permutations of other indicators such as for example, staging, Gleason, PSA etc,. This then forms the basis for the Nomogram . The diagnosis and details of an individual patient can then be fed into the Nomogram to help predict his outcome. However, there can be quite a difference in the way men are affected by PCa and as John has said because computations are based necessarily going back some years, they should not be considered as definitive but only generally indicative.

It can be said that many things are likely with PCa but that there are very few certainties, both in the way and speed at which and how it can advance in individuals and respond so differently to treatment from one man to another.

Barry

User

Posted 05 Apr 2019 at 17:40

Originally Posted by: Online Community Member

No, the side-effects of RP and RT are different. Some are shared, such as dry orgasms post-treatment, but others are specific to one form of treatment or the other. A longer or shorter period of urinary incontinence is universal after RP, for example, but doesn’t generally happen with RT. On the other hand, some men get quite severe side-effects from the hormone therapy that accompanies RT, and you don’t take hormones with RP. I was recommended to have HT+RT (I finished RT a little over a week ago) and have found it not too awful an experience at all.

All the best,

Chris

User

Posted 05 Apr 2019 at 18:25

Why the anonymous mud slinging and reputation assassination especially when it is admitted to be based, not on first hand knowledge or experience but on mere hearsay?

Surely all that matters is that whoever patient Dr NotverygoodbutwithagreatPRmachine dealt with is that they got a good result, feel better and felt looked after well?

Bollinge - if you got a good first hand experience from Dr NotverygoodbutwithagreatPRmachine then that is excellent and I am pleased for you.

What does it say about medical professional, Mr P, that speaks so disparagingly of a colleague? No professional courtesy, and anyway isn't there a law against that? ;-)

Hope everyone here has a good weekend.

dave

Now nearly 6 years on from RP, full recovery, no issues, virtually undetectable PSA.

Edited by member 05 Apr 2019 at 18:27 | Reason: to add to

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 05 Apr 2019 at 21:46

Colin - another possible consideration is nerve sparing. You could ask at what point nerve sparing would no longer be a possibility. I had non nerve sparing, I had no choice. If you’re going to have RP, make sure you get it before nerve sparing is no longer a possibility. I don’t know if that is one of the things they watch when under AS.

User

Posted 05 Apr 2019 at 22:13

For me, diagnosed at 50 with 3+3 low volume PCa in a very large prostate, I considered RP and brachytherapy. The latter wasn’t a realistic option due to the prostate size.

I didn’t seriously consider AS. PCa is a disease that metastasises, albeit usually very slowly and I felt that getting rid of it as early as possible minimises that risk and also gave the best chance of the lowest collateral damage.

So I had a RARP last June, using the Retzius sparing technique and with the advantage of “live” pathology allowing fully nerve sparing without risk This was done privately (thanks to insurance via my employer) by the same surgeon as Bollinge, whom I’d happily recommend.

I did have some post op complications (bleeding), the odds of this no doubt being increased by the large prostate, but was “dry” from catheter removal and ED was largely controlled by drugs from a fairly early stage. Can usually do without drugs now.

PSA virtually undetectable (0.02). The post-op pathology report “upgraded” me from 3+3 to 3+4 which I’m told is very common (40%) and confirms to me I was right to take action. The initial decision for me was also made easier by the fact that my large prostate has been causing me symptoms for many years (now gone!) and my father being diagnosed very late and now living with advanced disease.

Best wishes with your decision making process. I can highly recommend giving the PCa nurses a ring to discuss - they are excellent,

Nick

User

Posted 06 Apr 2019 at 12:28

Having been on active Surveillance since February 2017 with a G6 cancer I find the opinions here quite interesting, it seems to me that there is no definitive answer as to whether a G6 needs immediate treatment or to continue on surveillance as long as you can. I think the consensus opinion would be that for people in my particular situation carry on doing Surveillance until something changes.

I'm now 66 years old, but for Colin12345 maybe his young age should be a factor for him to consider, you have time to look at all your options but ultimately all you can do is ask yourself as many do who read these forums, can you cope with the knowledge you have a supposedly low grade cancer with the potential to need treatment later or do something about it now. I've asked that question to myself many times but like others have pointed out it's not a decision to take lightly considering the potential side effects that can come with treatment.

At this stage I'm comfortable with my decision on active surveillance, but am under no illusion that the situation may or most certainly will change for me in time to come. I wish you good luck with whichever route you take.

Interesting article from July 2018 http://www.ascopost.com/issues/july-25-2018/when-can-patients-with-gleason-6-prostate-cancer-safely-undergo-active-surveillance/

Edited by member 06 Apr 2019 at 12:33 | Reason: Not specified

Shut down the voices of doom and spend your time living.

User

Posted 06 Apr 2019 at 22:41

So, I am lucky, as the the size of the lesion is pretty small, G6, and I did ask if it's position in the prostate was suitable for nerve sparing. They said brachy might not be an an option navies its close to the urethra and there might be issues.

Long and short is my consultant, a very highly respected surgeon with whom I have complete faith, thought it was safe to continue on as for at least another 3 months, get further PSA and then MRi and the decide.

My psa started at 5.7 Nov 2017, and then went (over 3 monthly tests) 4.6, 3.7, 4.2, 5.1 and the last one pre 2nd biopsy was 2.8 WTF?

Anyway, there just one indicator I suppose. I'll enjoy the remaining ejaculations Bollinge, although maybe not the current, post biopsy, hp sauce ones.

Thanks all for your responses, I'll pop back and ask more Qs.

Thanks again cheers Colin

User

Posted 06 Apr 2019 at 22:53

Sounds like a good choice, Colin.

The good news about dry orgasms, by the way, is that they don’t feel any different. You just don’t get the mess :).

Cheers,

Chris

Edited by member 06 Apr 2019 at 23:06 | Reason: Not specified

User

Posted 07 Apr 2019 at 04:06

Originally Posted by: Online Community Member

I'll enjoy the remaining ejaculations Bollinge, although maybe not the current, post biopsy, HP sauce ones.

You’ll find your ejaculate will soon change back from strawberry to vanilla, but I honestly couldn’t tell you if the taste changes as well. 😉

Best of luck however it all pans out.

Cheers, John.

User

Posted 07 Apr 2019 at 12:17

Hi - from my own perspective I think a lot of it rides on your levels of anxiety and whether or not you consider AS something you can deal with. I was very similar, urological symptoms for 6 months and finally, after biopsy, Gleason 6 with one core out of 40 showing PCa. I am a naturally anxious and sometimes pessimistic person so opted for surgery rather than AS as I knew the 3 monthly tests and annual Biopsy would gnaw at me.

Two weeks after surgery things are healing up nicely in the body, incontinence is only stress induced (i.e. cough or fart) and even then it is a small amount. Nights largely 'dry'. No sign at all of erection despite all the nerve-sparing that was done!

I have to admit - the surgery is not the easiest, even though it was the 'robot' it does leave you in some discomfort and the catheter is annoying for a week or so. I see my consultant in a week and hoping for reasonable news regarding the histology report after removal. For me, surgery was the only route my brain could deal with but many others prefer AS as it is not invasive and if you have a laid-back demeanour is probably the more 'sensible' option. Me? I am too highly strung and wanted the bugger out regardless...took all of 5 minutes to make the decision (some would say too much haste). Looking back, would I have surgery or AS? Good question...I think I would still have the surgery to hopefully be done with it, or at least improve the chances of 'done with it'.

Not an easy decision and PCa does have a habit of isolating you as really only you can make the decision regardless of advice. A friend of mine has had Brachytherapy and that is not without its issues either...

Sorry no definitive answer - go with what your brain is telling you with all the evidence, then don't look backwards!

All the best,

Mark

User

Posted 07 Apr 2019 at 12:37

Originally Posted by: Online Community Member

You raise an interesting point there, Mark. Most of us are used to going to our GP, or to the hospital, and being told what the appropriate treatment for our ailment is: if you have appendicitis, you have your appendix removed. PCa isn't like that, though. There is a range of treatments available and, although we can be aided in our decision-making process, at the end of a day it's up to us to decide. There's always that nagging doubt about whether or not we've made the right choice, and that can be a cause for anxiety.

There's rarely a simple "right answer". Things would be so much easier if there were!

Best wishes,

Chris

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