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Hi everyone

User
Posted 10 Sep 2018 at 14:46

Hi all,


New to the forum having been recently diagnosed last week - Gleason 3+4 (I think T2..b? - need to confirm this)


Awaiting results of a bone scan and then an appt later this week to discuss.


At 44, I'm somewhat reeling and a little overwhelmed in getting to grips with which option to choose in regards to treatment. Specialist Nurse has suggested available options are RP, Brachytherapy or (possibly) AS.


All I've managed to really discern so far are that there are no optimal options and a lot of information out there which is tricky to get to grips with.


Anyway, this post was just to say hi...I'll post the relevant questions in the relevant topic area.


Thanks!


 

User
Posted 10 Sep 2018 at 15:04

Welcome Stephen. Get as comfortable as you can for the journey mate. First things to do are to get and collect as much accurate informtion as possible about your Dx (diagnosis) - your profile mentions a 5% Gleason 5 at biopsy so you Doctors should be calling out your staging based on at least total Gleason of 8 which is G 3+5 assuming that the majority of PCa is G3.


Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 10 Sep 2018 at 15:13

Stephen,


it might be helpful for you to either download the ‘Toolkit ‘ from the publications section on this site or order a copy over the phone


Arthur

User
Posted 10 Sep 2018 at 16:50
Hi. Get all the info you possibly can from this site and speak to the nurses they are amazing. It massively comes down to how you are as a person as much as anything. If you want it out and decide on treatment then your life is going to change forever one way or another. There is no nice treatment at your age really. I was 48 at surgery. I’m a glass half empty sort of person , but I’d seriously be looking at AS if it was an option to you. It’s been proven with low grade cancers that doing nothing is as effective as taking on every treatment over a 10 yr period. Click peoples pictures and read their profiles. I wish you all the best and keep posting. Some very clever people on here !!

If life gives you lemons , then make lemonade
Show Most Thanked Posts
User
Posted 10 Sep 2018 at 15:04

Welcome Stephen. Get as comfortable as you can for the journey mate. First things to do are to get and collect as much accurate informtion as possible about your Dx (diagnosis) - your profile mentions a 5% Gleason 5 at biopsy so you Doctors should be calling out your staging based on at least total Gleason of 8 which is G 3+5 assuming that the majority of PCa is G3.


Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 10 Sep 2018 at 15:13

Stephen,


it might be helpful for you to either download the ‘Toolkit ‘ from the publications section on this site or order a copy over the phone


Arthur

User
Posted 10 Sep 2018 at 15:43

Fresh - Thanks, I made a typo in my profile. So it should have been 5% G4 (95% G3) for the RHS. LHS was 3+4 (5% G4)

User
Posted 10 Sep 2018 at 16:31

Good. load up your profile it helps we all take notice and read. I am new to this (5 months) and have take a lot of interest in peoples back stories and history/progress. lots of experts in this forum and the membership is growing so fast now. 


Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 10 Sep 2018 at 16:50
Hi. Get all the info you possibly can from this site and speak to the nurses they are amazing. It massively comes down to how you are as a person as much as anything. If you want it out and decide on treatment then your life is going to change forever one way or another. There is no nice treatment at your age really. I was 48 at surgery. I’m a glass half empty sort of person , but I’d seriously be looking at AS if it was an option to you. It’s been proven with low grade cancers that doing nothing is as effective as taking on every treatment over a 10 yr period. Click peoples pictures and read their profiles. I wish you all the best and keep posting. Some very clever people on here !!

If life gives you lemons , then make lemonade
User
Posted 10 Sep 2018 at 19:28
Hello Stephen,

Do you know the resolution of your mpMRI scan, as I am presuming you had one. Did you get a PIRADS score?

What kind of biopsy did you have?

I think you may be on the cusp of suitability for active surveillance. A friend of mine in his seventies with 3+4=7 has been on it for a few years. I think that would be the best bet for you at your age now for the time being, if the professionals think it appropriate. And also the least painless!

Bear in mind we are all ‘amateur urologists’ here, but collectively there is a mammoth wealth of knowledge on this site.

Best of luck.

Cheers, John.
User
Posted 10 Sep 2018 at 22:13

 Before I joined this community for support I had looked at other sites but found the timelag between some questions and answers was extremely long and some people had waited more than a week for responses to questions. The great thing about this community is that does not happen here responses are always timely and very helpful and well informed. 


Having started my journey in March with the dreaded, “your Gleason score is 4:5 T2c, I am now through to the end,  having been on Hormone treatment since mid April and now finished 20 fractions of radiotherapy only last week 


I was not offered RP as I had so much pca they could not leave  enough of a margin of cancer free tissue to have a successful outcome 


 So I proceeded down standard hormone therapy and radiotherapy pathway.  Although I still have to wait until early November to find out how successful my treatment has been, personally and this is my opinion only, I’m glad I  was not offered surgery as I think when I was in the initial shock of diagnosis I may have had the opinion of just cut it out of me. 


 But everybody’s PCa is different  and so is their treatment pathway.  When I was waiting for my radiotherapy we were told not to compare our treatment with other patients in the waiting room as although they may have prostate cancer everybody is so different and everybody’s personal make up affects how they are treated.


  In some strange way although time spent waiting between some scans and diagnosis was agonising but it did give you time to consider your options.


 


 

Edited by member 10 Sep 2018 at 22:16  | Reason: Not specified

User
Posted 10 Sep 2018 at 22:56
I was diagnosed 3 years ago at the age of 53 also with 3+4 T2b. I decided to go on AS (Active Surveillance). The advantage of AS is that you do not get the symptoms from the treatment but the disadvantage is that there is the nagging worry that it will get worse before they pick it up. 3+4 is very marginal for AS and you should ensure that you get a Template Biopsy fairly soon in order to confirm when the cells are.

Earlier this year in spite of no apparent worsening in my condition because 3+4 is so marginal I decided to go for treatment and I decided on Brachytherapy. My reasoning is that the side affects from RP seem to be far higher than for Brachytherapy and PCa treatments are improving all the time. So even if PCa returns, hopefully, by that time the treatments will have even fewer side effects than today.

My opinion (as a patient) is that younger men with PCa should not have RP because of the side effects, but I have seen the opposite advice on this forum.

I am reminded of the fact that 20+ years ago if a women had breast cancer then they invariably had a mastectomy. Today my understanding is that fewer than 5% of women with breast cancer have a mastectomy. I believe that the same improvements will happen for PCa treatments.
User
Posted 10 Sep 2018 at 22:59
In many areas, active surveillance is ruled out for G7 and above. In some areas, you would be deemed too young for AS as more than a short term option while you sort out other things. For example, have you finished having a family? If not, you may want to have some sperm frozen for the future.

One factor in considering surgery v RT v AS is the % of cores affected, and the positioning of the cancer in each core. You have already reported that only 5% of the cancer observed was at a differentiation of 4 but does your paperwork tell you what % of each core was cancerous? That makes a huge difference to what happens next. In addition, the lab report will usually say whether the cancerous cells were deep in the gland or high up, close to the edge - the closer to the edge the less likely to be suitable for AS.

The sad fact is that young men tend to have a more aggressive or persistent cancer than older men, so urologist and oncologists might be reluctant to take risks with it. If AS does become an option then ensure that it is properly conducted - 3 monthly PSA tests with at least annual DRE and annual scans.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Sep 2018 at 23:06
Any G4 at the tender age of 44 will probably rule out AS. I assume it was a targeted TRUS biopsy? if so remember there will be a lot of prostate that wasn't sampled.

Personally I would want it out and maybe opt for open surgery to minimse any ED.

If you are offered AS you should also consider making some significant diet / lifestyle changes to see if you can improve your staging.
User
Posted 10 Sep 2018 at 23:06

."I am reminded of the fact that 20+ years ago if a women had breast cancer then they invariably had a mastectomy. Today my understanding is that fewer than 5% of women with breast cancer have a mastectomy. I believe that the same improvements will happen for PCa treatments."


Peter, that is a view more and more frequently expressed at urological conferences etc. It is said that in a few years, people will look back in horror at radical prostatectomy!

Edited by member 10 Sep 2018 at 23:08  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Sep 2018 at 23:44

In some strange way, I think we are approaching a crossroads on PCa treatment. As someone who has had HT plus RT and am waiting for the all clear, personally, I think RP will become a less attractive option, with its inherent risks. All surgery carries risks and it’s my personal opinion we should mitigate that risk wherever possible.


I had my 20 fractions of RT on a brand new IMRT machine with ultrasound support. I know some NHS Trusts don’t offer the ultrasound support. I am through the first week post treatment, with no urinary issues and no rectal toxicity problems.


The staff were very skilled and professional plus I stuck to the enema and drinking drills to the letter and kept fit and exercised ever since I started HT.


Every treatment my live ultrasound was overlaid on my planning CT scan and my tattoos  lined up by lasers. After going through all the warnings of numerous side effects etc, I can’t believe how well I feel


Alan

User
Posted 11 Sep 2018 at 00:08

Thanks for all the responses. If nothing else this has has given me more questions to get answers to.


I hope to have better/more complete information by the end of this week.


To answer some of the questions (and I will need to triple check this is correct at my next appt):


1) I had a MpMRI - no idea of resolution or PARIDS score (or what that is, so I'll look that up!)


2) After this, all I know was there was an area that gave cause for concern and I was referred for a targeted TRUS biopsy.


3) During the biopsy they took 6 cores from the RHS of the gland (where there was no suspected issue) - this gave Gleason 3+3. I core positive for cancer, < 5% by volume. LHS (the suspicious side) they took 7 cores. 6 positive with GS of 3+4. 50% cancer by volume of which 5% Gleason 4 - I need to check if this is 5% of the whole core or 5% of the 50%....ie 2.5% of the whole core.


4) When I was given the results I asked for a copy of the pathology report but was told they are not routinely given to patients - I will be asking again during this week's appt.


My thoughts are the RHS is relatively indolent and AS would be appropriate. The LHS is mostly 3+3 with a marginal amount of 4...so again wondering if actually AS would be fine...


One question is whether it's worth getting the biopsy validated somewhere else and where the appropriate place to do that would be?


I had kind of started to come around to the idea of surgery, but when I started to examine the definition of "continent" *(1 or 2 pads a day) and "no ED" (yes, you'll likely have ED unless you use pills/injections/Vacuum pumps/implants) I started to think about whether I really wanted to live for the next 10/20/more? years having to deal with that. + the fact that recurrence is still a possibility.


Also wondered about HIFU - it's not been offered and I don't know if my cancer would be a candidate. I do have some private cover through work, so thinking about exploring that as a non invasive delaying tactic. So therefore, in order of preference, I think: AS, HIFU, Brachy, EBRT, Surgery.


I'm torn between taking the most aggressive measures to try to get rid of this vs taking agressive measures if the cancer is deemed aggressive and less aggressive measures if it isn't - with the thought to buy some time until the research/treatments progress a bit. The logic of ripping out the entire prostate just seems questionable to me - why not just remove everything from the pelvis down to be sure?! And why have they got to remove a chunk of urethra? - surely if it can be left undamaged with a TURP, the same could be done during a RP??


On the other hand, hoping the bone scan is clear and that this whole discussion isn't moot :(


Lot's to ponder, but appreciating the insights


 

User
Posted 11 Sep 2018 at 00:18

Oh, and Lyn, I've had my family and had a vasectomy about 10 years ago, so that's not a concern thankfully. I'm very much aware that this could all be so much worse. The bad news is I've found out I have PCa, the good news is I've found out I have PCa (so hopefully can do something about it) :)

User
Posted 11 Sep 2018 at 00:21

Stephen


Its my opinion that this is the moment in your journey that you do not need to make quick decisions.


Talk at length to your OH in depth and at length, leaving nothing out.


in your treatment priorities list you don’t include Hormone Therapy. In my humble opinion this is the most important part of fighting PCa 


At Gleason 3:4 T2b Personally I would not consider RP. But you need all your scan results, Bone and CT and MRI before you can make an informed decision.


 Like other people in this community I would recommend that you download the Toolkit and all the relative documentation that deals with your stage of your journey.  You will find documents that give you detailed information on your  PCa staging 


Now is the time for caution, don’t jump into somewhere you might not need to go.  I know it is hard my friend as I have been there but please be patient and wait till you get all the information needed to make a truly informed decision on where you are going 


 In March this year I was in exactly the same position you find yourself in,  it is just my personal opinion but radical prostatectomy is not always  the answer, only in some cases, but everyone is different so you must listen to your oncologist.  Your oncologists is the medical professional who knows what is best for you  looking at your biopsy and scan results and should they recommend you go for radical prostatectomy then you must take their decision on board, but they will also allow you to think of other types of treatment and at the end of the day only you can make that decision 


 On this community site you will get lots of valuable information from people that have been in the same situation as you and I would urge you to listen to the sound counselling you will get on here and use it in  combination with the professional medical advice you received 

Edited by member 11 Sep 2018 at 00:42  | Reason: Not specified

User
Posted 11 Sep 2018 at 07:21

All paths lead the same way. They seek to destroy the prostate cancer, collateral damage limitation is subjective and case by case on all treatment paths. Your diagnosis is similar to mine. The problem we face is that each of us has made a decision and are invariable wedded to that course of action and often advocate it (maybe without objectivity always).


My rational was that my primary objective is to get rid of the cancer. The best route for oncological control that (subject to staging) gives you two bites of the cherry is RALP (Conventional, open or Reitz) followed by HT+RT if needed. There is less chance of going HT+RT and then Surgery, why, because no matter how much you dress up RT it mashes up the prostate and welds it to surrounding structures, making surgery as a backup highly risky. 


The effectiveness of RT post RALP was initially a question I put to surgeons and oncos both felt that it was acceptable in the face of the most effective treatment line.


Guess what, when Both procedures RALP and RT work as one off procedures they both get similar outcomes. When nerve sparing is 100% then ED becomes Unlikely. 


AS is something I would only do if you plan to go to RT because every day on AS becomes a day with reducing surgical margins. If you get an mpMRI image get it copied onto disk. Look at the imaging report and if there is capsular contact then the position of that contact is key. NEROSAFE May becomes a potential option.


My surgery was a breeze But there is hardly a day that goes by when I don’t try and second guess my choices. As if this was not hard enough 😂 


Fresh


 

Edited by member 11 Sep 2018 at 13:38  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 11 Sep 2018 at 11:45

I’m not sure I totally agree with Fresh’s interpretation of the aims of treating PCa, but this is my opinion and I really don’t want to be controversial and upset anybody.


I don’t see the aim of all treatments being to “destroy the prostate”.


my RT was specially designed on IMRT with ultrasound support, and computer modelled to the shape of my prostate and my level of cancer.


As I was treated I could hear the interleaved lead sheets in the treatment head shuffling around to form the perimeter of my prostate to help limit collateral damage.


I asked the lead radiologist what happens in my prostate after treatment, was I going to be left with an empty prostate after my body dealt with the 80% of destroyed cells that were cancerous. She told me the body would evacuate the dead cancer cells then the prostate cells can regrow and this action can cause a rise in PSA levels.


so, lots for me to think about post Radiotherapy, including a very small chance the Radiotherapy can cause bladder or bowel cancer in 5 to 10 years time. 


We all know that everyones situation is different, and there are so many variations that people suffer from, plus the age situation. Coupled with that, different NHS Trusts and different Oncologists all have a certain degree of differing opinions on what’s best for every different patient. 


I can see the benefit of “having it out”, as then more options can then be explored should PCa resurface. For me as a HT RT patient if I get a resurgence it will be mainly due to my cancer becoming “Hormone resistant”. But, as I am on 3 years HT I am hoping that any cancerous cells that manage to survive the RT will be starved to death before becoming resistant.

User
Posted 11 Sep 2018 at 13:24

I would request a template biopsy under general anaesthetic to determine a more complete picture of the extent of your cancer, and then armed with the results go to an eminent urologist and an oncologist for second opinions and advice.


Your are absolutely entitled to a copy of your histology report, and all your medical records as well. If there is any more intransigence make a formal request to the ‘Patient Access to Records’ department at your hospital.


As I said, AS is your best bet for the time being, if the doctors think you can get away with it. For the record, I have no incontinence post-op which was three months ago, but no sign of erections either, and 2” seems to have gone missing somewhere on the operating table. The urethra passes right through the prostate, so when it is removed, they have to reconnect the pipework, unfortunately without a spacer to make up the shortfall.


Anyway, I have been told I am cured of PCa!


Cheers, John

Edited by member 11 Sep 2018 at 13:31  | Reason: Not specified

User
Posted 11 Sep 2018 at 13:30

Originally Posted by: Online Community Member


I don’t see the aim of all treatments being to “destroy the prostate”.



Sorry, typo, should say “Destroy the Prostate Cancer”


Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 11 Sep 2018 at 14:57

50% of the cores on LHS is rather high - I suspect that will rule out AS as anything other than a short term holding position.


HIFU has good results as a salvage treatment but the outcomes as a radical (primary) treatment for HIFU have been very disappointing so far. If you have money, you could talk to Claret about travelling to the US for focal laser ablation?


I disagree with Fresh's statement above - that with 100% nerve sparing, permanent ED is unlikely. Even with complete nerve sparing there is still a high chance of erectile problems. NHS stats are that 90% of men can get an erection at 12 months either naturally or using mechanical/ chemical assistance after nerve-sparing but worth noting that this is about getting some kind of erection - the stats for achieving an erection sufficiently solid for penetrative sex are lower at around 80%. Plus, anecdotal evidence here suggests that it is worse than that and the surgeons may be over-reporting:-/

Edited by member 11 Sep 2018 at 14:59  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Sep 2018 at 00:52

As regards HIFU, this has been refined over recent years so that some of the adverse side effects are reduced or have have been virtually eliminated. Unfortunately, it can't treat beyond the Prostate like EBRT for example and is less suitable for extensive cancer contained within the Prostate which can be removed by surgery. Where the tumour is small and particularly where it is on only one side of the Prostate, It can provide good results for very suitable patients, even as primary treatment and has the advantage that it can be repeated in need or be followed by RT. One big drawback is that parts of the Prostate cannot be reached due to limitations of the probe which is inserted through the rectum. So even a small tumour can't be treated in some parts of the Prostate which is another reason why this treatment may prove unsuitable.


The lady Dr mentioned in this link administered my HIFU at UCLH :- https://www.imperial.ac.uk/news/187086/prostate-cancer-ultrasound-treatment-effective-surgery/


 

Edited by member 12 Sep 2018 at 00:59  | Reason: Not specified

Barry
User
Posted 12 Sep 2018 at 16:28

Hi Stephen,


My husband like you had surgery at the bottom of his list and it felt like an over treatment of a low risk ( though high volume ) diagnosis.


We would have chosen AS but as we could afford an out of pocket solution we travelled to the USA for a focal laser ablation (FLA). This is also available in Holland.


He is on 4 monthly surveillance in the UK ( down from 3 monthly) and still has his prostate with latest PSA of 1.44


only side effect was a dry orgasm ( happens in 30% of cases after FLA)


we uploaded scan here and had 2 phone consults before booking. In addition we asked our UK consultant for an opinion and her opinion was ‘if you can afford it, do it’


i am sure RP will not be around in the future.. your TURP point is interesting .. I hadn’t thought of that but seems a very good question.


FLA does not stop a radical treatment being taken up in the future if things change but for now lack of side effects means we have zero regrets. 


 


Good luck


Claret


 

User
Posted 12 Sep 2018 at 16:49
The attraction for surgical removal is just that no playing "whack a mole" with local recurrence or concerns that your remaining healthy prostate tissue will someday go rogue again.

FLA does complicate any subsequent RP and the BCR rates for FLA then RP are also worse.

Personally I think any miracle cure that eliminates the need for surgery will be genetic and chemical combined.
User
Posted 12 Sep 2018 at 17:12

Originally Posted by: Online Community Member
The attraction for surgical removal is just that no playing "whack a mole" with local recurrence or concerns that your remaining healthy prostate tissue will someday go rogue again. 


And the ‘unattraction‘ of surgery is the distinct possibility of incontintence (not me - thank you Professor X), impotence (me - no thank you Professor X, not your fault), and the loss of penis length (down to either the Prof or his sidekick Da Vinci) which seems to largely go unmentioned and unmentionable here!


If, as in my case the post-operative biopsy showed spread to my lymph nodes, not shown on my MRI, although I have been told I am cured, I may end up having HT and RT anyway at some point in the future.


These are some of choices for you, and everyone here is trying to help you make the right decision.


Cheers, John

User
Posted 12 Sep 2018 at 21:06
Claret - I’ve been reading your profile and found the various places in the US and Holland that do this. Definitely interested in exploring further depending on the full disclosure of my diagnosis. Also looking at HIFU, cryo and VTP.

Decided for now that I need a clearer idea of exactly what I’m dealing with. I seem in some ways to be more concerned with ED, incontinence and shortened penis length, possibly still in denial about really how serious this potentially is and that these things may turn out to be the least of my worries. At the same time not relishing the possibility of dealing with these things for years, decades?

Reading the various back stories and profiles in here is somewhat sobering (and also encouraging at times) and I’m perhaps getting ahead of myself with the naive assumption that survival is a given. Lyn, as you pointed out, there seem to be a number of younger guys who discover this and subsequently succumb to this disease in very short order.

Have to admit I’m a bit all over the place emotionally, which is not like me and has caught me by surprise. Everything seems fine and I’m just getting on with things and then out of nowhere I just feel incredibly sad. Guessing this is normal :)

Once I’ve had this next consult I then also need to let my kids know what’s going on. They’re great lads but even though the youngest is in his mid teens, I’m not sure how they’ll cope.

My wife has been great, I really couldn’t ask for anyone better to be at my side through this and I’m pretty sure we’ll deal with things one step at a time.

I think I can live with horrific side effects, post surgery/RT, if I can be convinced, with evidence that it’s necessary - I’m just not there yet.

I’m fortunate in many ways. I have some health cover via work so will be seeking second/third opinions and I can also release savings/house equity if needed for self funding of focal therapies if that’s the way I think is best. My family are mostly grown up, with the exception of my teenage son - but it’s not like they’re toddlers or as if we were in the planning stages.

Still. It’s a shock. Given I’d quite happily spend weeks trying to decide on the best TV, laptop, lawnmower etc to buy, coming to a decision on this is going to take a little bit of time. In the meantime, going to work, putting my happy face on and no one is any the wiser. I’m fit, not overweight, don’t smoke, look healthy - not that the cancer gives a sh1t

Incredibly thankful you lot are out there - the amassed knowledge, experience, compassion and sense of humour here is humbling.
User
Posted 12 Sep 2018 at 21:18
I think it is natural to focus on minimising side effects although not everyone reacts the way you describe. John was a little older at 50 but he wafted away any suggestion of side effects such as ED / incontinence as issues that probably only happened to old men and therefore were not applicable to him. Naive, yes, but his ability to pretend it all wasn't happening turned out to be the thing that kept him sane.

I once heard good advice - to prioritise:
1. which option is most likely to achieve full remission
2. can I live with the definite and potential side effects of that option
3. if not, which is the option that will best balance my chance of remission with a risk of side effects that is acceptable to me
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Sep 2018 at 21:48
Good luck Stephen, we appear to be in the same camp re the importance of research before making a decision. We talked to the VTP professor in Israel but he was not considered appropriate due to the bilateral tumour. Our UK monitoring consultant was involved in the TOOKAD trial throughout but despite the positive results from the clinical stage 3 trial we seem no closer to an NHS focal treatment.

We could have had HIFU privately ( our monitoring consultant offered to do it but encouraged our FLA plan)

I agree with Frankj1 that the big breakthrough will be a vaccine or genetic solution but my husband was told by three consultants he would need to do something in 5 years though AS in the meantime would have meant QOL was maintained in the short term.

Currently our US consultant has delivered what he called the trifecta of no incontince, no erectile dysfunction and cancer control ( PIRAD 2 from PIRAD 4 and PSA 1.44 from 3.56.

Whatever path we choose we all know that no guarantees exist and reoccurrence is reported in guys with no prostate, those with an irradiated prostate, those on HT and all other chosen
treatments- there are miles to go to sort this out.

John - re penis length back in early 2017 I was seriously cross to find out this side effect ( from this forum) as the surgeon who recommended surgery ( always on the list of top surgeons in the uk) didn’t even mention it! We laugh now but after that consult my husband was ready to sign up for the surgery in complete ignorance of the true consequences)

So we are all different and quality of life ranked paramount for us given the low risk diagnosis.

All the best Stephen, it’s not a place anybody wants to be and the decision making period was the worst part for us. We found once a decision was made it got easier so feel for you.

Clare
User
Posted 13 Sep 2018 at 01:04
Lest anybody thinks you will certainly avoid reduction in the size of your Penis with HT/RT, this is not the case as I can confirm.

In a recent interview the leading advocate of focal therapy in the UK discussed various treatments of which long term assessments can only be made but interestingly he said the way forward in the future may be by injection into the tumour
Barry
User
Posted 13 Sep 2018 at 01:51
Yes, a disappearing penis and shrinking testicles is a common result of HT, as Barry says.

The other potential side effect of all treatment options, including AS if it is conducted properly, is life though - mustn’t forget that.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Sep 2018 at 02:05

There are quite a lot of conversations on here about loss of length / girth and the causes and I have posted on it numerous times. Our uro told us that he has had a patient who lost so much they could no longer urinate standing up. 


General rule is that with surgery, you will lose approximately the same length as the length of the prostate that has been removed. Some surgeons claim that this is a fallacy and the bladder simply sits lower in the pelvic cavity once the prostate has gone, but that isn’t the story we see on here.


Loss of testosterone can put the genitals into a pre-pubescent-like state, hence the disappearing balls.


Penile atrophy, whether that is through surgery-induced ED, RT induced ED of HT induced loss of libido, will cause loss of length and girth when erect. Lose it or lose it is a real thing - it is a scandal that not all men on HT are given advice and referral to an ED clinic when they first start treatment.

Edited by member 13 Sep 2018 at 02:06  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Sep 2018 at 02:47

I did see at a glance on the front page of one newspaper this week that a man had been given 'bionic manhood' or put another way a willy had been constructed for him. It was also mentioned on the press review on Sky News. It would be interesting to find out more so will Google it though a bit late for me and at a rumored cost of £50,000 not cheap.!https://www.mirror.co.uk/news/uk-news/man-no-penis-andrew-wardle-13230187


 


As in the Mail and Mirror - https://www.mirror.co.uk/news/uk-news/man-no-penis-andrew-wardle-13230187


 


 


Bit off piste but may help some PCa deficient men in future!


 

Edited by member 14 Sep 2018 at 03:37  | Reason: Not specified

Barry
User
Posted 14 Sep 2018 at 19:49

So, some good news. Bone scan was all clear 🙂


Saw the urologist today, same one that did my DRE during my initial referral. Seems like an eminently sensible and pragmatic chap. He went through the various options including AS, surgery and Brachytherapy. He was pretty clear that a focal approach wasn’t an option, but not overly clear why not.


Said with AS I could potentially ‘get away with it’ for years, but given there was some GS4 cancer his concern was that it at least has the potential to spread - at which point it’s either too late for a curative outcome or likelihood of NS is decreased and positive margins decreased. In addition there’s the psychological overhead of dealing with the anxiety.


Discussed nerve sparing and his view was it would likely be unilateral. I asked about neurosafe, but they don’t do it - subtext was that it adds additional time and cost so hasn’t really taken off across much of the NHS.


Discussed RT - stated that this is generally kinder to erections although my age was a concern due to length of time available to develop a recurrence, secondary cancers or other complications. But has referred me to an oncologist to explore further (also did a flow test so they have some data for that). Did state that salvage RP could be attempted post RT if needed.


Said I can get copies of my notes etc. Told me that the MRI wasn’t really good enough to get a clear steer on the location of the cancer - other than the LHS was suspicious - so biopsy wasn’t that targeted after all.


Cautioned that some other surgeons, whilst good, are also perhaps better at self promotion, so advised being wary of those that promise the earth - they don’t always deliver.


I’m edging toward a surgical option. Good curative chance, RT available as a backup plan and will have to cross fingers re continence and ED - although I think neurosafe is a potentially beneficial option to maximise chances of negative margins whilst maintaining function. My prostrate is relatively small at 20ml - so hopefully that reduces risk/extent of shrinkage ...


Ok - that’s enough for me for now. Keeping an open mind until I’ve seen the onco and been for a 2nd opinion with a certain Guildford based professor who has been mentioned on here several times.


Have a good weekend everyone!


 

Edited by member 14 Sep 2018 at 19:51  | Reason: Not specified

User
Posted 14 Sep 2018 at 20:08

Great news about the bone scan. 


There really is no focal option in the UK and to get an opinion from an overseas focal specialist you do need a really clear scan forcthem to assess. 


thanks For the update


Clare

User
Posted 14 Sep 2018 at 20:26
That's really good news about the bone scan, Stephen. I remember how utterly petrified I was waiting for the results of my scan. I felt like the weight of the world had been lifted from my shoulders when my urologist said it was all clear.

Very best of luck, no matter what treatment option you go for.

Chris
 
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