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User
Posted 13 Sep 2017 at 09:40

Hi

I am new to this forum and to be honest I have never really been a forum type person, but like many before I have just (6 September) been diagnosed with Localised Prostate Cancer.  I am not unique, I am sure, but I am confused and just need some seasoned and reasoned people to guide me a bit of advice. My head is spinning the options are unclear and to be honest this has hit me for six inside.

So as I say I have Localised Prostate Cancer, 3 of the 10 TRUS biopsy showed cancer cells which on the Gleason chart are 3 + 4 giving me my score of 7.  It is T2 and only on the right side of the prostate and I am 59 years old.

I have been offered 3 types of treatment, Beam Radiotherapy, Brachytherapy and Radical Prostatectomy - as a cure.  I have discounted the Beam Radiotherapy, it just sounds a bit random (I am sure it is not but in my head that's how it feels).  So that leaves me with 2 options and for the life of me I cannot work out which is the most suitable for me despite all the excellent documentation that I have reviewed.

I am a fairly active guy, enjoys sport, has a healthy sex life and apart from the last couple of years where I seem to have all ailments possible I have always been a healthy person.

My first thought was Surgery, cut it out and be gone with it, but they tell me that they could only be nerve sparing on the left but not on the right side of the prostate because that's where the cancer is. However the risks are incontinence and erectile dysfunction. So I move to Brachytherapy but that also has similar risks (although slightly lower on the ED side) and is not certain to kill all the cancer, after which I understand surgery then becomes more complicated and would suggest that the cancer has also had the opportunity to spread a little further.

The success rate for both is apparently similar, the side effects are apparently similar - the decision just becomes harder.  I know that nobody is going to say this is right for you, just do it and to be honest I know it is my decision.  I am just a bit dazed and confused and wondered if there was anybody who had had to make similar decision and what was the deciding factors, success and issues might also be interesting.

User
Posted 15 Sep 2017 at 14:13

Hi All

Thank you all for your comments, thoughts and messages. 

 

In writing what I did, it has in someways helped me think out loud rather than just have this swirling mass of information in my head.  I guess getting your replies has also made me realise I am not the only one in this situation (I did know this but direct feedback just emphasises it more to me) and ensure I make a decision rather than put my head in the sand - I have now made the decision.

 

I have also spoken to the specialist nurses on this site and also with the local hospital nurses and I have decided to go for the Surgery, I want this cut out and removed, it may not be everyones answer but it is the one that fits my headspace.

 

There are some fine people around, all the nurses I have so far come into contact with have been marvelous and you folks have responded brilliantly. Thank you all very much for helping me realise that I had to make a decision.

 

Rappo

 

User
Posted 13 Sep 2017 at 16:56

Rappo, you already know that there is nothing to choose between the treatment options in terms of success rates and side effects. You must research this for yourself and make what has to be a very personal decision. Individual success stories on here from those who have happily or unhappily undergone each of the treatments will not actually take you very far forward, leaving you still undecided, I suspect. My advice is to do the research and weigh up with your Oncologist's advice what feels best for you at this time in your life. You will face changes and side effects, hopefully short term, but you will certainly survive this scare and continue with your sport and the other things you enjoy for the rest of a normal lifespan.

Good Luck and stay fit!

AC

User
Posted 13 Sep 2017 at 17:14

I was in exactly the same situation as you but only 47 yrs old. I simply couldn't make my mind up. It was awful and I was terrified of ED. In the end they only offered surgery and family pressure bullied me into it really. I didn't want it. Read my profile by clicking my picture if you want. I was too late for surgery with spread to lymphs and bladder. Total ED but great continence. Two years on I look as fit as a fiddle , am fully continent and my erection has returned. If they'd got the cancer I'd be very happy and in a good place. However I'm incurable now. It really has to be your decision and it's tough whatever you choose. But you can come through it ok. Good luck

User
Posted 13 Sep 2017 at 23:40

Hi, I know nothing about the brachy option but statistics aside I have formed a view that surgery depends on the skill of the surgeon. We (children of the NHS) tend to glibly believe that every surgeon will do as good a job as can be done but I suspect there are good and bad and good days and bad days and if I were you I would start from demanding nerve sparing on the basis that it can be done so make it be done.

User
Posted 14 Sep 2017 at 00:16

No option is guaranteed to cure PCa and sometimes it is more advanced and/or mutated than diagnosed. Increasingly, RT is being given after Prostatectomy to increase the chances of success or where there is doubt that all the cancer has been removed but with added risk of side effects which is another aspect to consider. Before making your decision you could ask your surgeon how confident he is that he can remove all the cancer so RT would not be needed.

b

Barry
User
Posted 14 Sep 2017 at 01:16
Originally Posted by: Online Community Member

... if I were you I would start from demanding nerve sparing on the basis that it can be done so make it be done.

Sorry Nomad, I don't think this is good advice. If the consultant and his specialist team have looked at the site of the tumour and decided that nerve sparing is not possible on that side then we must deduce that the cancer is close to the edge or travelling towards the nerve bundles.

We have a member on here who went for a second and then third opinion until he found a surgeon prepared to do nerve sparing despite the first two saying that the nerves needed to go. Unfortunately, he has not achieved remission, some cancer was presumably left behind with the nerves.

Edited by member 14 Sep 2017 at 01:18  | Reason: Not specified

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

User
Posted 14 Sep 2017 at 01:23

Rappo,
If not already done so, ask for an appointment with an oncologist who will explain radiotherapy and brachy to you in detail (including how very precise external RT is these days) - not saying it will turn out to be your preferred treatment but you should seek full facts before deciding.

My husband has had surgery (nerve sparing on only one side) and radiotherapy and his erections are fine now. ED is a significant risk but not a definite.

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

User
Posted 14 Sep 2017 at 07:59
Hi Rappo

I had RP 31.03 14 nerves spared on one side I have had no problems with ED and more importantly for me over 3 yrs now PSA still undetectable

User
Posted 14 Sep 2017 at 11:48

One of our members had his Prostatectomy done by one of the handful of of top rated surgeons in the profession but he had a very bad outcome as regards incontinence. So a more experienced and respected surgeon is statistically, other things being equal, more likely to achieve a better result but there are also good surgeons whose results may not look so impressive but this can be attributable in some cases to their taking on more marginal cases which other surgeons would not want to do.

Whilst overall there may not be much difference in outcomes in terms of success between surgery and RT, there are differences in side effects and an individual may be more suited to one or the other treatment. Unfortunately, some surveys seem to produce differing results. One which I have quoted before, looks at various treatments stages of advancement from the point of view of successful outcome for various treatments which for the large majority will be their primary concern rather than side effects. If you work round this site and type in your staging it brings up various treatment results which you can juggle to show those of interest. In general, as regards RT, it seems to me that Brachytherapy plus External Beam does well followed by Brachytherapy on it's own. However, one has to remember that all treatments have been refined over recent years and continue to be so and inevitably results do not necessarily represent what current treatment will achieve or what other surveys may show. http://www.pctrf.org/

Barry
User
Posted 14 Sep 2017 at 22:16

Sorry Lyn but . . . . it is clear from our respective posts on here that you believe that, the NHS is the shining light of all that is good and that everybody working in it is flawless AND I believe that it is a collection of individuals of varying abilities and sometimes over inflated views of their abilities.

It’s simple, we/you/I/they either simply accept everything we/they are told and lay back and take whatever is delivered and say "thank you" OR we/you/I/they raise the bar and start from the basis of ‘this is the outcome I want – tell me why I can’t have it’ i.e. do you not have the skill to deliver that outcome?

User
Posted 14 Sep 2017 at 23:53
Hi,

Twelve months ago I was in your position. I've had 2 skin cancers and from that experience I felt a need to be very focussed on what I wanted as it's easy to lose slots and then time and you don't know whether the hospital is going to get maxed out or if your condition will change.

Apparently some people are happy to watch the tumour and see how it goes. Whereas some want it out asap. It can depend on your case and attitude.

I was very keen to get it out, particularly as they said it was near the edge and it was 4+3.

After the op it was 4+4 and I was told I'd made the best decision. As I didn't need RT after a month I was almost back to normal but leaking and using pads, and with ED.

9 months after the op I'm not leaking but have ED and my psa is classed undetectable. I was told there could be nerve sparing on one side but another surgeon said they can't guarantee it even if they try. Although 4+4 is serious stuff so I'm in hope and have absolutely no regrets.

I'm older than you and it must affect your thinking. Also some people think RT and others are as good as RP whereas I find it hard to believe.

Regards

User
Posted 15 Sep 2017 at 17:28

Pleased that you have got there Rappo. We bicker amongst ourselves sometimes but we all have the best of intentions.

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

User
Posted 15 Sep 2017 at 18:25

I'm glad you've made your decision Rappo!

Please read my profile, I have no regrets re my decision and my age profile etc similar to yours!

Wishing you all the best!

User
Posted 18 Sep 2017 at 11:45

Best wishes for the operation! I made the same decision 18 months ago, and so far so good.

It is a big operation, and you will feel very knocked about for the first few days. For me the biggest problem initially was the intense pain from intestinal wind: to get to the prostate the surgeons have to push the rectum and large intestine out of the way, and that physical abuse seems to promote wind as well as making the tissue very sensitive. Don't be reluctant to use the painkillers offered, it only lasts a couple of days. After that, apart from getting fed up with the catheter, the main problem was easily getting tired as the body recovered from the operation. For the first couple of weeks I needed an afternoon nap and for months afterwards I got tired in the evening and went to bed well before my wife.

But the good news is that recovery happens slowly but surely. I was able to go on some already booked family holidays, albeit a little carefully, and I gradually used fewer pads to control urinary leakage. It took a few months before erectile function started to recover (I only had one nerve spared) but return it did and that is now quite acceptable if not precisely where it was before the operation.

For me, my experience in the NHS couldn't be faulted. Although I didn't consider going private, I suspect I would have ended up with the same surgeon but with the disadvantage of being in a hospital which didn't have the range of back-up specialties to cover any problems which might have arisen. Our local hospital trust is hard pressed, but happily it has prioritised cancer services.

Show Most Thanked Posts
User
Posted 13 Sep 2017 at 16:56

Rappo, you already know that there is nothing to choose between the treatment options in terms of success rates and side effects. You must research this for yourself and make what has to be a very personal decision. Individual success stories on here from those who have happily or unhappily undergone each of the treatments will not actually take you very far forward, leaving you still undecided, I suspect. My advice is to do the research and weigh up with your Oncologist's advice what feels best for you at this time in your life. You will face changes and side effects, hopefully short term, but you will certainly survive this scare and continue with your sport and the other things you enjoy for the rest of a normal lifespan.

Good Luck and stay fit!

AC

User
Posted 13 Sep 2017 at 17:14

I was in exactly the same situation as you but only 47 yrs old. I simply couldn't make my mind up. It was awful and I was terrified of ED. In the end they only offered surgery and family pressure bullied me into it really. I didn't want it. Read my profile by clicking my picture if you want. I was too late for surgery with spread to lymphs and bladder. Total ED but great continence. Two years on I look as fit as a fiddle , am fully continent and my erection has returned. If they'd got the cancer I'd be very happy and in a good place. However I'm incurable now. It really has to be your decision and it's tough whatever you choose. But you can come through it ok. Good luck

User
Posted 13 Sep 2017 at 23:40

Hi, I know nothing about the brachy option but statistics aside I have formed a view that surgery depends on the skill of the surgeon. We (children of the NHS) tend to glibly believe that every surgeon will do as good a job as can be done but I suspect there are good and bad and good days and bad days and if I were you I would start from demanding nerve sparing on the basis that it can be done so make it be done.

User
Posted 14 Sep 2017 at 00:16

No option is guaranteed to cure PCa and sometimes it is more advanced and/or mutated than diagnosed. Increasingly, RT is being given after Prostatectomy to increase the chances of success or where there is doubt that all the cancer has been removed but with added risk of side effects which is another aspect to consider. Before making your decision you could ask your surgeon how confident he is that he can remove all the cancer so RT would not be needed.

b

Barry
User
Posted 14 Sep 2017 at 01:16
Originally Posted by: Online Community Member

... if I were you I would start from demanding nerve sparing on the basis that it can be done so make it be done.

Sorry Nomad, I don't think this is good advice. If the consultant and his specialist team have looked at the site of the tumour and decided that nerve sparing is not possible on that side then we must deduce that the cancer is close to the edge or travelling towards the nerve bundles.

We have a member on here who went for a second and then third opinion until he found a surgeon prepared to do nerve sparing despite the first two saying that the nerves needed to go. Unfortunately, he has not achieved remission, some cancer was presumably left behind with the nerves.

Edited by member 14 Sep 2017 at 01:18  | Reason: Not specified

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

User
Posted 14 Sep 2017 at 01:23

Rappo,
If not already done so, ask for an appointment with an oncologist who will explain radiotherapy and brachy to you in detail (including how very precise external RT is these days) - not saying it will turn out to be your preferred treatment but you should seek full facts before deciding.

My husband has had surgery (nerve sparing on only one side) and radiotherapy and his erections are fine now. ED is a significant risk but not a definite.

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

User
Posted 14 Sep 2017 at 07:59
Hi Rappo

I had RP 31.03 14 nerves spared on one side I have had no problems with ED and more importantly for me over 3 yrs now PSA still undetectable

User
Posted 14 Sep 2017 at 11:48

One of our members had his Prostatectomy done by one of the handful of of top rated surgeons in the profession but he had a very bad outcome as regards incontinence. So a more experienced and respected surgeon is statistically, other things being equal, more likely to achieve a better result but there are also good surgeons whose results may not look so impressive but this can be attributable in some cases to their taking on more marginal cases which other surgeons would not want to do.

Whilst overall there may not be much difference in outcomes in terms of success between surgery and RT, there are differences in side effects and an individual may be more suited to one or the other treatment. Unfortunately, some surveys seem to produce differing results. One which I have quoted before, looks at various treatments stages of advancement from the point of view of successful outcome for various treatments which for the large majority will be their primary concern rather than side effects. If you work round this site and type in your staging it brings up various treatment results which you can juggle to show those of interest. In general, as regards RT, it seems to me that Brachytherapy plus External Beam does well followed by Brachytherapy on it's own. However, one has to remember that all treatments have been refined over recent years and continue to be so and inevitably results do not necessarily represent what current treatment will achieve or what other surveys may show. http://www.pctrf.org/

Barry
User
Posted 14 Sep 2017 at 22:16

Sorry Lyn but . . . . it is clear from our respective posts on here that you believe that, the NHS is the shining light of all that is good and that everybody working in it is flawless AND I believe that it is a collection of individuals of varying abilities and sometimes over inflated views of their abilities.

It’s simple, we/you/I/they either simply accept everything we/they are told and lay back and take whatever is delivered and say "thank you" OR we/you/I/they raise the bar and start from the basis of ‘this is the outcome I want – tell me why I can’t have it’ i.e. do you not have the skill to deliver that outcome?

User
Posted 14 Sep 2017 at 23:53
Hi,

Twelve months ago I was in your position. I've had 2 skin cancers and from that experience I felt a need to be very focussed on what I wanted as it's easy to lose slots and then time and you don't know whether the hospital is going to get maxed out or if your condition will change.

Apparently some people are happy to watch the tumour and see how it goes. Whereas some want it out asap. It can depend on your case and attitude.

I was very keen to get it out, particularly as they said it was near the edge and it was 4+3.

After the op it was 4+4 and I was told I'd made the best decision. As I didn't need RT after a month I was almost back to normal but leaking and using pads, and with ED.

9 months after the op I'm not leaking but have ED and my psa is classed undetectable. I was told there could be nerve sparing on one side but another surgeon said they can't guarantee it even if they try. Although 4+4 is serious stuff so I'm in hope and have absolutely no regrets.

I'm older than you and it must affect your thinking. Also some people think RT and others are as good as RP whereas I find it hard to believe.

Regards

User
Posted 15 Sep 2017 at 01:54
Originally Posted by: Online Community Member

Sorry Lyn but . . . . it is clear from our respective posts on here that you believe that, the NHS is the shining light of all that is good and that everybody working in it is flawless AND I believe that it is a collection of individuals of varying abilities and sometimes over inflated views of their abilities.

It’s simple, we/you/I/they either simply accept everything we/they are told and lay back and take whatever is delivered and say "thank you" OR we/you/I/they raise the bar and start from the basis of ‘this is the outcome I want – tell me why I can’t have it’ i.e. do you not have the skill to deliver that outcome?

You couldn't be further from the truth Nomad - we went private and have self-funded that for nearly 8 years now to ensure that a) John had the surgeon of our choice and b) had access to the best facilities and advice we could find. However, I do not believe that a surgeon would decide to only offer nerve sparing on one side just on a whim - if there are flaws in the NHS these are not going to present themselves as a doctor taking one lot of nerves and not the other. So yes, I believe that medical professionals armed with all the technology may see evidence that a tumour is too close to the edge of the prostate to make bilateral nerve sparing a safe option. This evidence may be from the scan or the cores taken at biopsy.

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

User
Posted 15 Sep 2017 at 14:13

Hi All

Thank you all for your comments, thoughts and messages. 

 

In writing what I did, it has in someways helped me think out loud rather than just have this swirling mass of information in my head.  I guess getting your replies has also made me realise I am not the only one in this situation (I did know this but direct feedback just emphasises it more to me) and ensure I make a decision rather than put my head in the sand - I have now made the decision.

 

I have also spoken to the specialist nurses on this site and also with the local hospital nurses and I have decided to go for the Surgery, I want this cut out and removed, it may not be everyones answer but it is the one that fits my headspace.

 

There are some fine people around, all the nurses I have so far come into contact with have been marvelous and you folks have responded brilliantly. Thank you all very much for helping me realise that I had to make a decision.

 

Rappo

 

User
Posted 15 Sep 2017 at 17:28

Pleased that you have got there Rappo. We bicker amongst ourselves sometimes but we all have the best of intentions.

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

User
Posted 15 Sep 2017 at 18:25

I'm glad you've made your decision Rappo!

Please read my profile, I have no regrets re my decision and my age profile etc similar to yours!

Wishing you all the best!

User
Posted 18 Sep 2017 at 11:45

Best wishes for the operation! I made the same decision 18 months ago, and so far so good.

It is a big operation, and you will feel very knocked about for the first few days. For me the biggest problem initially was the intense pain from intestinal wind: to get to the prostate the surgeons have to push the rectum and large intestine out of the way, and that physical abuse seems to promote wind as well as making the tissue very sensitive. Don't be reluctant to use the painkillers offered, it only lasts a couple of days. After that, apart from getting fed up with the catheter, the main problem was easily getting tired as the body recovered from the operation. For the first couple of weeks I needed an afternoon nap and for months afterwards I got tired in the evening and went to bed well before my wife.

But the good news is that recovery happens slowly but surely. I was able to go on some already booked family holidays, albeit a little carefully, and I gradually used fewer pads to control urinary leakage. It took a few months before erectile function started to recover (I only had one nerve spared) but return it did and that is now quite acceptable if not precisely where it was before the operation.

For me, my experience in the NHS couldn't be faulted. Although I didn't consider going private, I suspect I would have ended up with the same surgeon but with the disadvantage of being in a hospital which didn't have the range of back-up specialties to cover any problems which might have arisen. Our local hospital trust is hard pressed, but happily it has prioritised cancer services.

User
Posted 18 Sep 2017 at 23:39

Hi Rappo

All the best.  Do have a read of my profile if you have a minute.   Both my brother and myself doing fine. (albeit , as seen in my profile , we took differing routes) Obviously, there are differing types of surgery options. 

I can't fault NHS, and didn't meet my surgeon until the morning of the op !  I was a little surprised.

I can't add much more, other than Kegel must help, or maybe I was so lucky, I still keep exercising those muscles (I assume the surgeon was extremely attentive). It is a major op. However I had more pain from biopsy incidentally, dry after 24 hrs. (catheter in 7 days). Took 2 to 3 weeks  to get energy levels back.  I have zero nerve saving (I took their advice).  Constipation (maybe my fault) was an issue. I think my gut, was quite traumatised, I was quite bloated, albeit only discomfort, no pain.  

ED, very very slowly going in the right direction, (excuse the pun)  however now 2.5 years, yet still improving.  I'm on zero meds. 

I was going to post earlier .. as 1 of the main differentiators re. RT or RP .  is in relation to ED.  It seems following RT , then ED can tend to get worse over time whereas with surgery, the impact is at day 1, trauma etc , whether you have 1 or 2 nerves saved.     Overtime; and we could be talking 3 + years, small improvements do take place (ie nerve repair, maybe re-routing signals)

Hopefully you have gained as much information as possible.  All the very best. 

Regards 

Gordon

 

Edited by member 18 Sep 2017 at 23:41  | Reason: Not specified

 
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