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User
Posted 04 Apr 2019 at 21:39

Hi all, 

I need your help/advice please,  finally pulled my head from the sand after this weeks biopsy results and I’m lost tbh. I’m 48 just, but was diagnosed at 46.

I was diagnosed last year after dull groin pain didn’t clear up with antibiotics. This led to a PSA test, 5.7, and then had MRI and Biopsy last year.  MRI showed a 0.3 (I’m assuming cc volume) lesion left lobe near the apex, and the biopsy results were 4 out of 6 on left lobe, 5% volume Gleason 3 +3.  For the record, I totally appreciate how lucky I am, in detecting this early and know I am way more fortunate that many on this forum.  

The right lobe was clear, and I was offered AS - which I opted for.  

PSA has bounced around over the year and last one was 2.8, but I had another MRI and repeat biopsy anyway as it was a year from initial diagnosis.  MRI showed increase in volume to 0.5 (again I’m assuming this is cc) and biopsy results this week were : targeted biopsy this time to lesion on left lobe, 4 out of six positive, volume up to 50%, still Gleason 6.  Nothing on right lobe.  Consultant said I was ok to continue AS, with another psa in  3 months, Mri and then I can decide next steps.  But now I am at the point of considering treatment after it’s all sinked in .  I have a family and that’s all good, had vasectomy 8 years ago, so not worried about fertility. 

Whats going on in my head is I don’t want to risk it progressing if I have the opportunity to do something now, rather than waiting another 6 -18 months and risk treatment options changing if it progresses. 

Can anyone offer any advice based on their experience?  Be really grateful, thanks folks 

 

 

User
Posted 04 Apr 2019 at 22:19
You probably could reasonably continue on AS with a Gleason 3+3, but is there any point in doing so knowing that it’s going to need treatment at some point? If I were in your position I think I’d want to get the treatment over and done with rather than have the knowledge that it needed doing hanging over me. But I’m not you and only you can make that decision.

Has your urologist discussed treatment options with you?

Best wishes,

Chris

User
Posted 04 Apr 2019 at 22:50

Hi Chris,

thanks for your quick reply.  Yes my urologist has gone through all the options - he's been a diamond tbh.  

You know what it's like, don't really take it all in during the results consultation and I have had 48 hrs to consider my position. 

Am swaying towards RP, and just getting on with it, given the increase in volume over the past year and associated uncertainty that as the wee bugger grows it might start getting nastier.  

Trying to balance this with the potential side effects of RP.  Ho hum.....

 

User
Posted 04 Apr 2019 at 22:53
Seems sensible to have the next PSA test followed up with an MRI and then I think the thing to ask your consultant is whether s/he believes the cancer has increased from 5% to 50% or whether it was simply because this most recent biopsy was targeted to the area already identified to be a problem.

When lesions are reported in this way, it is usually millimetres not cc so still very small.

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

User
Posted 04 Apr 2019 at 22:54
If the numbers are as reported here in three months, you should go and talk to an oncologist before making any decision re treatment - you may be suitable for brachytherapy or one of the newer treatments.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Apr 2019 at 23:11

Hi Lyn,

thanks.  Yes my consultant did say that the fact it was targeted this time could well be the reason the for the increase in core volume.  

Its all just so uncertain, and nothing is really definitive. When I discussed it, it seemed fair to continue with AS, but now I've had the chance to mull it over, am thinking it might be better to get rid and not risk the chance that it could morph/develop beyond a 6.

User
Posted 04 Apr 2019 at 23:37
Hi Colin,

It may or may not be of some consolation to you to learn that some critical illness insurers will not pay out on a Gleason 3+3=6 cancer diagnosis as is it not classed as ‘critical’ or terminal. Some experts say G6 should not be called ‘cancer’ at all.

My friend is in his seventies, is G 3+4=7 and he has been on active surveillance for five years, but with annual consultant appointments and mpMRI scans (private). He has recently seen raised PSA levels so he will have to do something different soon.

You are quite young, so I would advise you to defer any radical treatment as long as possible, or as long as you feel comfortable with, based on the advice of your doctors, of course.

Best of luck.

Cheers, John.

User
Posted 05 Apr 2019 at 03:37
By deferring treatment you are also obviating the risk of the treatment and it's side effects until the event but you should be carefully monitored. You should consider whether you want to bank your sperm before having any treatment.
Barry
User
Posted 05 Apr 2019 at 06:11
Hi Colin , I too was 46 at first problems and had surgery at 48. Click my picture and read my profile if you want to. I must admit I’m a negative person but have every right to be nearly 4 yrs on and now incurable. Just be aware that whatever treatment path you choose , then your life will change forever. There is no easy option it seems with regards to side effects. The effects of surgery on your love life are devastating and shocking to a young man and fixing the problem can take years. It’s not a decision to take lightly. In your position I would defer treatment until someone told you it was vitally necessary. It’s just a horror once you’re on the rollercoaster unless you get very lucky. Best wishes and great people and advice on here b

If life gives you lemons , then make lemonade

User
Posted 05 Apr 2019 at 09:13

I would agree with Chris.  From my perspective, I would want to delay the rollercoaster for as long as possible - once I went down the treatment path, there was no going back, and the side effects really are quite impacting.  Obviously a personal choice though, I was Gleason 9 so really there wasn't an option.

I'm intrigued by the idea of the Gleason rating increasing.  I seem to recall asking my oncologist if that is how PCa progresses, and she didn't give me a clear answer.  Did my cancer start out as a 4 (or 5), or did it start as a 3 and develop into something more meaningful from there?

 

User
Posted 05 Apr 2019 at 09:41
Generally speaking the Gleason stays the same throughout - a G3 does not morph into a G5 over time.

However, the G score is a report of the most prevalent pattern. It might be that a tiny proportion of 4 or 5 is not spotted in the early years but progresses more quickly than the 3+3 over the years and becomes the more prevalent pattern. That is why regular biopsies are an essential element of active surveillance.

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

User
Posted 05 Apr 2019 at 09:47

I was 46 when diagnosed 2.5 years ago.  I was T3a at diagnosis and Gleason 7.  The urologist and oncologist told me I couldn't wait and needed treatment.  Both recommended surgery because of my age.  Post surgery pathology came back pT3b and Gleason 9, so I'm glad I went for the surgery.  I've since had to have salvage radiotherapy and i'm currently on hormone therapy.  The effects of the treatment are devastating, and whilst difficult for any man, the younger you are, the earlier you miss out on a proper sex life and the earlier you have to deal with the other side effects.

Looking at your story, it seems to me you can take a great deal of reassurance from your AS test results. I'm risk averse and so would naturally lean towards treatment, but having lived through all the side effects, I'd really urge caution.  They are not to be under-estimated and, if they can safely be put off, I'd do that.  However, it's a very personal choice and you have to live with that decision, and for some men, that's easier said than done.  

Ulsterman

User
Posted 05 Apr 2019 at 09:49

A lot of people urging delay with reasonable supporting arguments, but I sense from your OP that you’ve already decided to treat as with your age as it is then treatment at some point is certain.  Why not do it when the burden and pathology are at their most favourable?Just as sometimes surgery leaves you problems, so too does AS lead to missed opportunity for cure.

“if it were done, when ‘‘tis done then ’twere  well it were done quickly”. There’s wisdom there but it’s only ever swapping one uncertainty for another, albeit hopefully  progressively less life-threatening ones. 

User
Posted 05 Apr 2019 at 10:07
There is nothing wrong with that advice sumdumbloke; my point was only to wait the 3 months and another MRI before making a decision whether to treat. My guess is that the further MRI may be a more detailed one. If he changes his mind now and asks for another urology appointment to discuss possible treatments, he could be waiting the 3 months anyway and end up having the discussion without the facts needed.

Anecdotally, the younger a man is at diagnosis the more aggressive and persistent the cancer eventually turns out to be. But waiting 3 months for another round of diagnostics seems sensible to me.

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

User
Posted 05 Apr 2019 at 10:22

I have no quibble with that Lyn. Seems entirely sensible in fact.

 I just thought that the tide of advice being to persist as long as possible with AS seemed to be based on factors that weren’t necessarily present in the OP’s circumstances.

 

 

 

User
Posted 05 Apr 2019 at 11:13

Originally Posted by: Online Community Member
There is nothing wrong with that advice sumdumbloke; my point was only to wait the 3 months and another MRI before making a decision whether to treat. My guess is that the further MRI may be a more detailed one. If he changes his mind now and asks for another urology appointment to discuss possible treatments, he could be waiting the 3 months anyway and end up having the discussion without the facts needed.

If a delay will provide useful additional diagnostic information and allow a better-informed decision about what treatment will be optimal, that seems like a good choice. If it's simply delaying the inevitable, though, then if it were me I'd want to get it over and done with. Is there any doubt that it will eventually require treatment, I wonder? Clearly a prostate cancer diagnosis for a man in his 40s is very different from a diagnosis for a man in his 80s!

Chris

 

User
Posted 05 Apr 2019 at 11:57
Hi Folks, thanks to all who have taken the time to respond and offer very sound opinion and advice - really appreciated.

I maybe misunderstood my consultants point about progression. I wanted to know if there was a risk of the Gleason score increasing, the longer I waited (continued on AS). My concern was that in the past year, the lesion has almost doubled in size, albeit the grading hasn't changed yet according to the biopsy results. So what I had asked was, as the lesion grows, is there any evidence to suggest that the cell structure changes and advances beyond a 6 - a reasonable question to ask I think - but no definitive answer - might/might not. If anyone has any info on this be grateful if you could post a link.

To clarify where my head is at: I was comfortable on the AS route until the latest biopsy results (Tuesday). I can't fully appreciate the side effects post-treatment, as I haven't gone through them - but it does sound pretty awful from some of your experiences.

In the back of my head there's something saying, do it now - when the pathology is favourable. If I wait it, it could be a different story in 6 months time - and it sounds like no-one actually knows, although it seems more likely that it be the same, but it feels pretty 50/50 right now.

I am young (relatively), have had my family and no plans for any more - but the ED does concern me. 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?

Thanks again for all your input - its really helping to share this amongst knowledgeable others .... Cheers Colin

User
Posted 05 Apr 2019 at 12:19
Have you spoken to an oncologist yet, in addition to your urologist, Colin? Urologists do surgery and hence naturally tend to focus on that aspect of treatment. Oncologists do non-surgical treatment such as radiotherapy and brachytherapy and can advise on those. Surgery and radiation-based treatments have similar success rates, and radiation treatment can have fewer side-effects than surgery.

If you've not already done so, I'd suggest downloading or ordering the "Toolkit" from the information area of this site. It contains excellent information on the pros and cons of all the different types of treatment available for prostate cancer.

Best wishes,

Chris

User
Posted 05 Apr 2019 at 12:29

Originally Posted by: Online Community Member
So what I had asked was, as the lesion grows, is there any evidence to suggest that the cell structure changes and advances beyond a 6 - a reasonable question to ask I think - but no definitive answer - might/might not.

I already answered this above - a G3 pattern does not become a G4 or G5 pattern over time. However, you may have tiny amounts of G4 or G5 pattern that are not currently identified but which could over time, progress more rapidly than the 3s so your Gleason score could change to 3+4, 4+3 or 5+5 depending on the proportions. 

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

User
Posted 05 Apr 2019 at 12:40
Another aspect to consider is that a biopsy, by its very nature, is a random sampling of the cancer cells in the prostate, and won't necessarily pick up everything that's there. It's rather common for the pathology examination of a removed prostate to reveal more active and/or more widespread cancer than a biopsy and scans suggested.

Chris

User
Posted 05 Apr 2019 at 12:51

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 12:51  | Reason: Not specified

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

User
Posted 05 Apr 2019 at 12:56

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 12:58  | Reason: Not specified

User
Posted 05 Apr 2019 at 12:59

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 13:04

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 14:28
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 14:36

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 14:39  | Reason: Not specified

User
Posted 05 Apr 2019 at 15:00

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 15:10

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 15:10

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 15:11  | Reason: Not specified

User
Posted 05 Apr 2019 at 16:37
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 16:40

Originally Posted by: Online Community Member
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.

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 17:25

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 17:27  | Reason: to add to

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 05 Apr 2019 at 20:46

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 21:13
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 11:28

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 11:33  | Reason: Not specified

Shut down the voices of doom and spend your time living.
User
Posted 06 Apr 2019 at 21:41
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 21:53

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 22:06  | Reason: Not specified

User
Posted 07 Apr 2019 at 03:06

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 11:17

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 11:37

Originally Posted by: Online Community Member

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...

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

 

 

User
Posted 07 Apr 2019 at 21:32

😂😂 John,  we have a very similar sense of humour I reckon!  Haven't done a taste test, and the OH has the dry bokes at the very thought🤢 Although if she knew about the dry orgams, I'd be under the knife tomorrow...

User
Posted 07 Apr 2019 at 22:53

Originally Posted by: Online Community Member

PSA has bounced around over the year and last one was 2.8, but I had another MRI and repeat biopsy anyway as it was a year from initial diagnosis.  MRI showed increase in volume to 0.5 (again I’m assuming this is cc) and biopsy results this week were : targeted biopsy this time to lesion on left lobe, 4 out of six positive, volume up to 50%, still Gleason 6.  Nothing on right lobe.  Consultant said I was ok to continue AS, with another psa in  3 months, Mri and then I can decide next steps.  

Hi Colin,

There are some interesting replies.  I was surprised so many pins detected something with a 0.5cc volume tumour.  Mine was measured in size, 13mm, which is a lot more than 0.5cc and they only found it on one pin, untargetted though.  Prostates are often measured in c.c.  Mine was 37cc from memory. Mine was also in the left apex which seemed positive as it's away from the bladder join.

I'd have thought a low grade small tumour would be good for brachytherapy and has more options than one allowed to grow. I was twice warned about over treatment being a risk even though mine was near the edge and higher grade.

Yours seems a case where you could hang on with regular testing and spend some time deciding what's best. I'm older than you but I've absolutely no regrets about having the op and am living more or less normally. Treated early at the low risk state there's a very high chance of living as if nothing happened except sexually.  Most of the worry is about it coming back and with a low grade, small tumour near the apex, away from the edge that's a much lower probability. 

 

Edited by member 07 Apr 2019 at 22:59  | Reason: Not specified

 
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