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Surgery or radiotherapy????

User
Posted 30 Nov 2018 at 15:57

Had the appointment with the consultant yesterday and discussed both surgery and radio therapy with three months hormone treatment.

My prostate cancer is Gleason 8 with T2. I am having a bone scan next week but it hasn't gone to my lymph nodes and MRI showed it was contained. It is near the apex.

I would be interested in what direction you took with a similar diagnosis or if you can help with your experience please?

Does anyone have any information or experience of removing the prostate via robotic surgery?

Many thanks for your help in advance, it is much appreciated. I ideally need to decide my course of action by end of next week and I'm very confused at the moment.

User
Posted 30 Nov 2018 at 16:43
Everything else being equal, all radical treatments have just about identical success rates. The difference is in side effects:-

- RT can cause immediate but short-lived bowel problems and sometimes, difficulty weeing. Erectile dysfunction and bowel problems such as radiation damage tend to emerge many years later rather that immediately. Many men work through RT without needing to go on the sick.

- open RP and robotic RP are very similar. Open RP has slightly better outcomes in terms of 10 year recurrence, margins, and side effects such as permanent incontinence and erectile dysfunction but robotic RP needs a shorter time in hospital, you are less likely to need a blood transfusion and you may be back at work a bit quicker (about 8 weeks rather than 12 as an average). Men with heart problems may not be offered robotic because the operation is longer, requiring more general anaesthetic plus they tip you head down on the operating table. Open RP is laid flat.

- HT can be debilitating, it causes extreme fatigue for some but not all men. Breathlessness, loss of libido, and breasts are all side effects but if you are only on it for 3 months some side effects will only be temporary

Whichever treatment you choose, there are some almost certain side effects:

- you will be infertile

- you will no longer be able to ejaculate

- the penis will be thinner and, if you have RP, probably shorter

- you will probably have some incontinence for a short or longer time

- treatment may get rid of the cancer and you live longer

I would want to talk to an oncologist about the implications of RT when the tumour is at the apex. It is furthest away from the bladder which might be good in terms of RT induced cystitis, etc but is close to the sphincter that controls urine flow. I don't know if that makes a difference?

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

User
Posted 11 Dec 2018 at 12:39

Hello Dark Lane 

I agree with others that this is really only a choice you can make. However I do not agree with this statement "Everything else being equal, all radical treatments have just about identical success rates." 

You might want to examine the data on this web site to appreciate that not all outcomes are identical:

https://prostatecancerfree.org

I encourage anyone making these very difficult choices to arm themselves with as much relevant information as they can. By that I mean real data on outcomes. It is an unfortunate fact that outcomes for cancer patients in this country lag much of the developed world. Thus it is important to consider data that reflects experiences outside the UK to make a fully informed decision, in my opinion. 

Regrettably many cancer charities in this country will not give any information at all about treatments that are not offered by the NHS. This is a sad situation, as I believe we have the right to any information that might help us make an informed decision about our own lives. 

(I am not anti the NHS. My wife works in the front line of the NHS as a nurse.)

I wish you all the best in making your decisions.   

 

User
Posted 11 Dec 2018 at 15:07

Considering the efficacy of treatments and the possible side effects can be a bit overwhelming but try to remain positive.

If your prostate cancer is truly contained your chances of successful treatment with either RP surgery or Radiotherapy+hormones in the NHS are around 90%-95% (based on 15 year cancer free survival rates) - pretty damn good ! Choose whichever treatment you feel more comfortable with taking everything into consideration.

In terms of side effects its a bit of a lottery - read up about the possible effects of each treatment to prepare yourself but remember not everyone has the same experience. I had 6 months on hormones and one month of radiotherapy - the hormone side effects wore off as soon as I finished treatment and I am now one year cancer free with no side effects at all other than I produce less seminal fluid on orgasm (probably about 80% reduction in ejaculate fluid). Reading up on it and speaking to others who have had similar treatment to me this seems perhaps the only absolutely gauranteed side effect - usually 100% reduction with RP surgery and anything from 75% to 100% reduction in seminal fluid production with Radiotherapy. Some people find this a sexually debilitating side effect, however I can honestly say it has had no effect on me at all as it still feels like a normal orgasm. Others will have had a whole range of lasting side effects and I must stress that this positive outcome is just my experience but surely I'm not the only one ?

None of us can predict the future but if you are the sort of person that will continually worry post treatment that the cancer will return or questioning if treatment has worked then surgery is probably your best option for more piece of mind. I however, have never questioned the fact that I have been "cured" with my choice of treatment and live every day happy and grateful to my brilliant oncologist and my excellent NHS treatment.

Tony

 

User
Posted 11 Dec 2018 at 19:36

The original post was a question-

Does anyone have any information or experience of removing the prostate via robotic surgery?

 Many thanks for your help in advance, it is much appreciated. I ideally need to decide my course of action by end of next week and I'm very confused at the moment.”

This person has come to the forum for help and support - personal rants on the merits or not of the nhs and quoting out of date figures doesn’t help this person at all - success rates in the uk for treatment of contained prostate cancer are 90-95% irrespective of whether you opt for nhs or not. if you want a discussion on the nhs find the right forum.

tony

User
Posted 11 Dec 2018 at 16:25

And posting hugely negative comments about "outcomes in the UK lagging much of the developed world" is a rather bleak statement with no evidence to back it up? 

What evidence do you have that it is wrong?

https://www.telegraph.co.uk/news/health/news/11891554/UK-cancer-survival-worst-in-western-Europe.html 

https://www.cancerresearchuk.org/health-professional/cancer-statistics/worldwide-cancer/mortality#heading-One

https://www.nuffieldtrust.org.uk/resource/cancer-survival-rates 

The latter source, hardly biased, shows that five year Breast cancer survival rates in the UK are appreciably worse than:

Australia, Canada, France, Italy, New Zealand, Germany, Japan, Finland and the US (to mention a few). 

I think my statement is completely consistent with the evidence. It is up to you whether you want to look at it of course, though you might want to before criticising others. 

User
Posted 08 Mar 2019 at 15:10

My husband sees doctors at Mayo clinic for monitoring (we are in US) there philosophy is consider the size of the prostate (not sure if and how this applies to you). If you have a large prostate you are more likely to experience significant damage to other organs (bladder etc..) with radiation so surgery is better. If your prostate is relatively small or average sized then the choice is probably preference. I am sure your doctors have already advised you about this though. It seems like mostly a personal choice.

User
Posted 30 Nov 2018 at 17:53
There are only a very few surgeons that will do a Prostatectomy after RT. It makes what is already an intricate operation in a non radiated Prostate even more difficult and I was told that it is almost certain to cause permanent urinary incontinence.

Just to add one other thing which I would clarify about RT is that there is a possibility that the tumour can regrow (as in my case) according to a surgeon I discussed this with this week.

Barry
User
Posted 30 Nov 2018 at 18:05
Hi Dark,

My mpMRI showed no spread to my lymph nodes or extra-capsular extension (spread outside the prostate capsule), when in fact both had happened, only discovered when my excised prostate was biopsied, so bear that in mind. They don’t really know until it’s removed.

I know nothing of the HT/RT combo, as I hope to avoid them both, having been ‘cured’ via prostatectomy😉.

Click on my profile for full information about my own situation, (a cohort of one, as they say in these learned medical papers, so hardly representative!). I don’t regret my choice whatsoever.

As Matron says, request a consultation with an oncologist before you make any decision.

Did you order the Toolbox information folder from this website?

Best of luck whichever path you choose to take.

Cheers, John.

User
Posted 30 Nov 2018 at 18:31

Originally Posted by: Online Community Member
Hi Lyn ,I did read if you have r t you can not have r p after because of the damage to the prostate I don't know if this is true or not?

Thanks

Dark lane

 

It is usually true although as Barry says, there are a small number of surgeons that will attempt it in the right circumstances and we have at least one member that has had it. The problem is that RT makes the prostate into a mush that cannot be cut out cleanly. 

 

However, the idea that one treatment is better than another because you can always have the other treatment is flawed thinking. The fact is, if the first treatment fails, the statistical likelihood of achieving full remission via the salvage treatment is low and you have double the side effects. It is wise to choose your treatment based on the following pecking order:

- which treatment gives me the best chance of full remission

- can I accept the known and potential risks & side effects of that treatment

- if not, which is the next best treatment option whose risks are acceptable to me

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

User
Posted 30 Nov 2018 at 23:28

Hi, I had a 13mm tumour at the apex with Gleason 4+3 found to be 4+4 after the op.  I was told it was close to the edge so was keen to get it cut out asap.

I had manual keyhole surgery.  From what I gather robotic doesn't give any significant benefit.

I thought it's far from the bladder so it should be clear in that direction.  I asked the surgeon if it could spread to the sphincter and he just said it's not usual.  He said he'd take the nerves on one side.

Post op it was upgraded and the doctor I saw said with that Gleason he thought I'd picked the right option.  Although I don't know if it was time related or to get rid of it cleanly and enable a pathology report on the whole thing.

As for side effects you might or might not have them or for longer or shorter time.

I have no regrets at all about the choice and live in hope and without any serious after effects. I was so happy to get it out with only 3 hours asleep nothing else mattered.

I have an account of my operation and more here.....

https://sites.google.com/site/myprostateprobleminlancashire/radical-prostatectomy

 

User
Posted 10 Dec 2018 at 20:01
No-one can tell you that, Dark lane. if your medical team are saying that either option is open to you, that is because both have an equal chance of being successful so it is all down to your preference and which side effects you think are tolerable / intolerable.

Some men feel that they want the prostate cut out and in a bucket, some think that they would find knowing there was a cancer inside them too stressful, some are absolutely clear that they do not want to risk incontinence or ED. As I said to you in an earlier post, you just have to prioritise what's important to you, make a choice and then be fully committed to it.

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

User
Posted 10 Dec 2018 at 23:42

Hi,

I had a clear hierarchy and it was RP then RT.  But it was close to the edge. 

For me 2 days in hospital and pathology tests, plus zero psa seemed much better than 3 months of hormones, 1 month of daily RT, 3 months of hormones and wait up to a year to know if it worked.

There are side effects for both but I really didn't like the thought of RT perhaps effecting or shrinking my colon.

Regards

 

 

 

User
Posted 12 Dec 2018 at 20:43

Notabene- Apologies if you thought my positive outlook was just bland assurances. Maybe someone like myself that had a great experience with their nhs PC treatment is not the type of person this forum needs.

The original poster said everything pointed towards his PC being contained hence my figures on successful treatment for contained. 90-95% Successful means latest accepted figures for 15 years free of cancer after treatment specifically using RP or RT (about 2% difference between them). Obviously these are based on people having treatment 15 years ago so the general consensus is that 15 year rates today will be even higher with the improvement in both treatments.

I am one year cancer and side effects free but stayed posting on this forum because I thought a rare positive view would form a good balance for those just diagnosed and worried -  however I am leaving this forum now.

tony

 

User
Posted 13 Dec 2018 at 09:59

In case it is of interest, it might be worth noting that not all forms of external beam radiation therapy are the same. Proton therapy can be much more targeted and thus may do far less damage to sensitive and important tissue surrounding the tumour if it is localised. Proton therapy is not offered by the NHS for prostate cancer but it is available in several European countries as well as the US. The cost is not covered due to our EU membership, so unless one has private insurance, which may not cover it anyway, one has to pay. The cost will vary according to the extent of the therapy required, that is the number of rounds of treatment. 

The Proton Therapy Centre in Prague is extremely modern and up to date. It cannot give 5 or 10 year outcome statistics because it has not been offering prostate cancer treatment for longer than that. It is equipped with the best equipment in the world provided by a company called IBA in Belgium. 

For a localised tumour the treatment is likely to be about 5 daily sessions, thus completed in a week. At the time of writing I believe they have never had disease recurrence in the treated area for any prostate patient (obviously no one knows if this will remain true longer term).

Further information about the PTC is here: 

https://ukprotontherapy.co.uk

I do not work for nor receive any benefits from the PTC in Prague. I did receive treatment there. I have had no recurrence in the area treated. The side effects were not difficult. I have fewer and less severe long term side effects than have been described in this thread, but there are consequences to having one's prostate irradiated than cannot be ignored. 

I am not arguing in favour of this form of therapy compared with others. I am simply offering information and my own experience. I wish anyone facing these very difficult decisions all the very best. 

User
Posted 13 Dec 2018 at 14:29

Hello Dark Lane 

You don't have to take Hormone Therapy at all. I don't but that is my personal decision, which is because as far as I can see Androgen Deprivation has no curative effect. Many doctors will violently disagree with this statement but so far none have been able to point me to clear evidence to the contrary. There are also significant risks with HT which are not so frequently disclosed. 

However if you decide you would like to take Hormone Therapy (Androgen deprivation) as far as I am aware there is no conflict with Brachytherapy. 

When I was diagnosed and searching for information to help me I was very interested in brachytherapy. It was proposed with a course of HT before and after. In the end I only chose another option because of the timescales. 

Also please allow me to suggest that you should not be pushed into making a decision in a matter of days or weeks, if you do not feel ready to. Waiting for months is probably not advisable, but I doubt a delay of a week or two on any treatment option would make a difference to the outcome. You being happy with your choice matters more. 

Best wishes

User
Posted 13 Dec 2018 at 15:01

Hi Dark Lane 

At the risk of being contentious - I don't intend to make recommendations, but perhaps a suggestion for how you can arrive at a decision that you feel comfortable with. 

On the web site I gave a reference to https://prostatecancerfree.org there are visual tools which compare various treatment outcomes. This data is collected from 1000s of peer reviewed medical publications worldwide. It is not intended to prove to you (or anyone) which treatment is best for you. It is intended to help you have an informed conversation with your clinicians about your choices. 

To that end, and just to see whether it might be helpful, I went to the site and compared the options of Brachytherapy or as they call it Seeds or HDR, with or without HT (or ADT as it is labelled) and surgery, both Intermediate 

https://prostatecancerfree.org/compare-prostate-cancer-treatments-intermediate-risk/

and High Risk categories. (I am not sure which you might be in but your Gleason score was 7-8 as I recall). 

https://prostatecancerfree.org/compare-prostate-cancer-treatments-intermediate-risk/

There is information on the web site about how to interpret the graphical information and each dot represents an individual published paper which you or your doctor can retrieve and refer to if it is helpful. 

The idea is that you can select, compare and then print the graphical information and use it to have an informed discussion with your oncologist or urologist. I saved these comparisons and could send them to you if you wish. 

I hope this is helpful.

Best wishes

 

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User
Posted 30 Nov 2018 at 16:43
Everything else being equal, all radical treatments have just about identical success rates. The difference is in side effects:-

- RT can cause immediate but short-lived bowel problems and sometimes, difficulty weeing. Erectile dysfunction and bowel problems such as radiation damage tend to emerge many years later rather that immediately. Many men work through RT without needing to go on the sick.

- open RP and robotic RP are very similar. Open RP has slightly better outcomes in terms of 10 year recurrence, margins, and side effects such as permanent incontinence and erectile dysfunction but robotic RP needs a shorter time in hospital, you are less likely to need a blood transfusion and you may be back at work a bit quicker (about 8 weeks rather than 12 as an average). Men with heart problems may not be offered robotic because the operation is longer, requiring more general anaesthetic plus they tip you head down on the operating table. Open RP is laid flat.

- HT can be debilitating, it causes extreme fatigue for some but not all men. Breathlessness, loss of libido, and breasts are all side effects but if you are only on it for 3 months some side effects will only be temporary

Whichever treatment you choose, there are some almost certain side effects:

- you will be infertile

- you will no longer be able to ejaculate

- the penis will be thinner and, if you have RP, probably shorter

- you will probably have some incontinence for a short or longer time

- treatment may get rid of the cancer and you live longer

I would want to talk to an oncologist about the implications of RT when the tumour is at the apex. It is furthest away from the bladder which might be good in terms of RT induced cystitis, etc but is close to the sphincter that controls urine flow. I don't know if that makes a difference?

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

User
Posted 30 Nov 2018 at 17:15

Thank you Lyn for good information .

 

dark lane .

User
Posted 30 Nov 2018 at 17:31
Hi Lyn ,I did read if you have r t you can not have r p after because of the damage to the prostate I don't know if this is true or not?

Thanks

Dark lane

User
Posted 30 Nov 2018 at 17:53
There are only a very few surgeons that will do a Prostatectomy after RT. It makes what is already an intricate operation in a non radiated Prostate even more difficult and I was told that it is almost certain to cause permanent urinary incontinence.

Just to add one other thing which I would clarify about RT is that there is a possibility that the tumour can regrow (as in my case) according to a surgeon I discussed this with this week.

Barry
User
Posted 30 Nov 2018 at 18:05
Hi Dark,

My mpMRI showed no spread to my lymph nodes or extra-capsular extension (spread outside the prostate capsule), when in fact both had happened, only discovered when my excised prostate was biopsied, so bear that in mind. They don’t really know until it’s removed.

I know nothing of the HT/RT combo, as I hope to avoid them both, having been ‘cured’ via prostatectomy😉.

Click on my profile for full information about my own situation, (a cohort of one, as they say in these learned medical papers, so hardly representative!). I don’t regret my choice whatsoever.

As Matron says, request a consultation with an oncologist before you make any decision.

Did you order the Toolbox information folder from this website?

Best of luck whichever path you choose to take.

Cheers, John.

User
Posted 30 Nov 2018 at 18:31

Originally Posted by: Online Community Member
Hi Lyn ,I did read if you have r t you can not have r p after because of the damage to the prostate I don't know if this is true or not?

Thanks

Dark lane

 

It is usually true although as Barry says, there are a small number of surgeons that will attempt it in the right circumstances and we have at least one member that has had it. The problem is that RT makes the prostate into a mush that cannot be cut out cleanly. 

 

However, the idea that one treatment is better than another because you can always have the other treatment is flawed thinking. The fact is, if the first treatment fails, the statistical likelihood of achieving full remission via the salvage treatment is low and you have double the side effects. It is wise to choose your treatment based on the following pecking order:

- which treatment gives me the best chance of full remission

- can I accept the known and potential risks & side effects of that treatment

- if not, which is the next best treatment option whose risks are acceptable to me

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

User
Posted 30 Nov 2018 at 19:01

Big thanks for your replies.

 

dark lane 

User
Posted 30 Nov 2018 at 23:28

Hi, I had a 13mm tumour at the apex with Gleason 4+3 found to be 4+4 after the op.  I was told it was close to the edge so was keen to get it cut out asap.

I had manual keyhole surgery.  From what I gather robotic doesn't give any significant benefit.

I thought it's far from the bladder so it should be clear in that direction.  I asked the surgeon if it could spread to the sphincter and he just said it's not usual.  He said he'd take the nerves on one side.

Post op it was upgraded and the doctor I saw said with that Gleason he thought I'd picked the right option.  Although I don't know if it was time related or to get rid of it cleanly and enable a pathology report on the whole thing.

As for side effects you might or might not have them or for longer or shorter time.

I have no regrets at all about the choice and live in hope and without any serious after effects. I was so happy to get it out with only 3 hours asleep nothing else mattered.

I have an account of my operation and more here.....

https://sites.google.com/site/myprostateprobleminlancashire/radical-prostatectomy

 

User
Posted 01 Dec 2018 at 10:21

Hi Peter, thanks for your information it was really helpful.

 

dark lane 

User
Posted 10 Dec 2018 at 19:35

Good evening, would anyone know what could be the best to have surgery or radiotherapy? 

 

Thanks

 

dark lane 

User
Posted 10 Dec 2018 at 20:01
No-one can tell you that, Dark lane. if your medical team are saying that either option is open to you, that is because both have an equal chance of being successful so it is all down to your preference and which side effects you think are tolerable / intolerable.

Some men feel that they want the prostate cut out and in a bucket, some think that they would find knowing there was a cancer inside them too stressful, some are absolutely clear that they do not want to risk incontinence or ED. As I said to you in an earlier post, you just have to prioritise what's important to you, make a choice and then be fully committed to it.

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

User
Posted 10 Dec 2018 at 23:42

Hi,

I had a clear hierarchy and it was RP then RT.  But it was close to the edge. 

For me 2 days in hospital and pathology tests, plus zero psa seemed much better than 3 months of hormones, 1 month of daily RT, 3 months of hormones and wait up to a year to know if it worked.

There are side effects for both but I really didn't like the thought of RT perhaps effecting or shrinking my colon.

Regards

 

 

 

User
Posted 11 Dec 2018 at 00:00
To be fair, whichever treatment you choose, you will spend the rest of your life wondering if it worked. Few seem to really overcome PSA anxiety, even years later. My dad had 13 years undetectable PSA after RP and the cancer still came back :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Dec 2018 at 12:39

Hello Dark Lane 

I agree with others that this is really only a choice you can make. However I do not agree with this statement "Everything else being equal, all radical treatments have just about identical success rates." 

You might want to examine the data on this web site to appreciate that not all outcomes are identical:

https://prostatecancerfree.org

I encourage anyone making these very difficult choices to arm themselves with as much relevant information as they can. By that I mean real data on outcomes. It is an unfortunate fact that outcomes for cancer patients in this country lag much of the developed world. Thus it is important to consider data that reflects experiences outside the UK to make a fully informed decision, in my opinion. 

Regrettably many cancer charities in this country will not give any information at all about treatments that are not offered by the NHS. This is a sad situation, as I believe we have the right to any information that might help us make an informed decision about our own lives. 

(I am not anti the NHS. My wife works in the front line of the NHS as a nurse.)

I wish you all the best in making your decisions.   

 

User
Posted 11 Dec 2018 at 15:07

Considering the efficacy of treatments and the possible side effects can be a bit overwhelming but try to remain positive.

If your prostate cancer is truly contained your chances of successful treatment with either RP surgery or Radiotherapy+hormones in the NHS are around 90%-95% (based on 15 year cancer free survival rates) - pretty damn good ! Choose whichever treatment you feel more comfortable with taking everything into consideration.

In terms of side effects its a bit of a lottery - read up about the possible effects of each treatment to prepare yourself but remember not everyone has the same experience. I had 6 months on hormones and one month of radiotherapy - the hormone side effects wore off as soon as I finished treatment and I am now one year cancer free with no side effects at all other than I produce less seminal fluid on orgasm (probably about 80% reduction in ejaculate fluid). Reading up on it and speaking to others who have had similar treatment to me this seems perhaps the only absolutely gauranteed side effect - usually 100% reduction with RP surgery and anything from 75% to 100% reduction in seminal fluid production with Radiotherapy. Some people find this a sexually debilitating side effect, however I can honestly say it has had no effect on me at all as it still feels like a normal orgasm. Others will have had a whole range of lasting side effects and I must stress that this positive outcome is just my experience but surely I'm not the only one ?

None of us can predict the future but if you are the sort of person that will continually worry post treatment that the cancer will return or questioning if treatment has worked then surgery is probably your best option for more piece of mind. I however, have never questioned the fact that I have been "cured" with my choice of treatment and live every day happy and grateful to my brilliant oncologist and my excellent NHS treatment.

Tony

 

User
Posted 11 Dec 2018 at 16:25

And posting hugely negative comments about "outcomes in the UK lagging much of the developed world" is a rather bleak statement with no evidence to back it up? 

What evidence do you have that it is wrong?

https://www.telegraph.co.uk/news/health/news/11891554/UK-cancer-survival-worst-in-western-Europe.html 

https://www.cancerresearchuk.org/health-professional/cancer-statistics/worldwide-cancer/mortality#heading-One

https://www.nuffieldtrust.org.uk/resource/cancer-survival-rates 

The latter source, hardly biased, shows that five year Breast cancer survival rates in the UK are appreciably worse than:

Australia, Canada, France, Italy, New Zealand, Germany, Japan, Finland and the US (to mention a few). 

I think my statement is completely consistent with the evidence. It is up to you whether you want to look at it of course, though you might want to before criticising others. 

User
Posted 11 Dec 2018 at 16:59
There are people who naïvely think the NHS is ‘the best in the world’, maybe because they haven’t been round the world.

Four-hour minimum waits at A&E are not normal in most of Western Europe, neither are long waiting lists for consultations or surgery. My mate is going blind with cataracts and his appointment is next April!

The simple facts are the NHS is underfunded, and we are lied to by politicians, who say they are putting more money into it, but they never take account of the 20% population increase and thus potential patients. When did they put 20% extra funding into it?

Most European countries pay about 8% of GDP on healthcare, the US around 10% (millionaire doctors), and we pay 6%, which is why poor nurses have to do twelve hour shifts.

Having said all that, the NHS has been great for me this year, following my little difficulty down below, so credit where credit’s due.

Cheers, John.

User
Posted 11 Dec 2018 at 17:12

Its all well and good to start slagging off the UK for its cancer outcomes but what is the point, eh?  The vast majority here are not, like you, in a position to be able to pay thousands and thousands of pounds for treatment overseas.  I certainly cannot afford it and I will, like the vast majority, have to make do with what the NHS offers.  

I have no idea what the "vast majority" are in a position to do, nor I suspect do you. As you say, a statement with no evidence. 

Quite a large number of people pay "thousands and thousands" of pounds every year to go on holiday every year and buy themselves new motor cars, clothes and so on. I do not know what choices they might make if their lives depend on it and nor, I suspect, do you. 

Whether you have to make do with what the NHS offers is dependent to some extent on what pressure patients and charities like Prostate Cancer UK put on politicians to make changes to what the NHS can offer. If they continue with the delusion that UK cancer outcomes are wonderful, then I doubt any improvements will occur. Perhaps you are happy with that. I don't think you are entitled to speak for everyone else. 

If you want to persist in believing that the NHS is the best health care system in the world - be my guest. At least you will always be happy with your own outcome.

If you want to ignore sources of information that conflict with your prejudices - be my guest. That doesn't mean that everyone else must do as you do. 

So I will ignore your patronising final comment.

As will I yours. 

User
Posted 11 Dec 2018 at 19:36

The original post was a question-

Does anyone have any information or experience of removing the prostate via robotic surgery?

 Many thanks for your help in advance, it is much appreciated. I ideally need to decide my course of action by end of next week and I'm very confused at the moment.”

This person has come to the forum for help and support - personal rants on the merits or not of the nhs and quoting out of date figures doesn’t help this person at all - success rates in the uk for treatment of contained prostate cancer are 90-95% irrespective of whether you opt for nhs or not. if you want a discussion on the nhs find the right forum.

tony

User
Posted 11 Dec 2018 at 22:57

This is my Dad’s post. He has to make a decision by Friday as to which route to take and he is still unsure. I have been faced with the worst pain staking decision myself and all I can say is go for the least worst option. 

Has anyone chosen HT and RT with Gleason 8 prostate cancer? What percentage chose either option do you know? 

If anyone has any advice or has had a similar diagnosis then please let us know. 

Thank you in advance for your help. 

 

 

 

 

User
Posted 11 Dec 2018 at 23:27

Hi, I don't know how many choose what but I had the op with Gleason 4+3, post op it was 4+4.   

I chose the op for a few reasons.  The tumour was said to be near the apex edge which is well away from the bladder.  I wanted it fully removed asap. I believed the risk of side effects were far lower priority than removing it quickly.   

RT seemed a less interventionist  choice that would avoid surgery which I didn't really want to have,  but I'd still have the tumour for 3 more months.  4+4 is a high grade. 

Post op the consultant I saw said spontaneously with the upgraded Gleason it was definitely  the right decision.  Also the diagnosing consultant said after I'd chosen it I'd made the decision he'd have made.

I don't really want to influence too much as your fathers case will be different. For example if it was near the bladder there could be a good case for having RT that will hit surrounding areas.  Even so you could say you'd like it out asap.

RT is  given to people who are unfit, overweight or elderly as well as medical reasons as it's not as strenuous as the op which puts you on a 30 degree tilt head down.  It's just a couple of hours if you're thin and perhaps half an hour  longer if you're not.

I don't know if it influenced things but I was so up for the op the surgeon fitted me in only 10 days later.

 

 

 

Edited by member 11 Dec 2018 at 23:31  | Reason: Not specified

User
Posted 12 Dec 2018 at 07:16
At 67 it's tough decision, personally I would opt for surgery (and did!) But this was based on the advice of 2 Urologists (one of whom did not do prostatectomies) and personal experience: my dad died if PCA and had Radio therapy, my father in law (now X!!) had the op and died of something else BUT he was plagued with incontinence issues as a result of the op.

With what I know now my father in law was probably over treated and my dad was doomed as he had left it too late (ignored symptoms for many years).

So probably best to take the advice of your medics on this one!!!

User
Posted 12 Dec 2018 at 07:23
I have a Gleason of 7 4+3. I opted for RT because of possible side effects I think I can cope with from treatment. Check out my profile and my post “My Journey”

It is not an easy decision.

Bob

User
Posted 12 Dec 2018 at 11:30

This person has come to the forum for help and support - personal rants on the merits or not of the nhs and quoting out of date figures doesn’t help this person at all - success rates in the uk for treatment of contained prostate cancer are 90-95% irrespective of whether you opt for nhs or not. 

Thank you Tony. You are right, the original poster asked for help. I posted information that was intended to be helpful and was attacked for it. 

The data on the web site I referred to is updated continuously. It should be obvious that it is impossible to track outcomes at 10 years unless treatment was 10 years ago. That is not out of date data. 

Quoting data for "contained prostate cancer" is also not helpful unless you know (I did not) whether Dark Lane is  Low, Intermediate or High risk, since it could be misleading. 

What do you define as success? Median Overall survival, if so at what interval? Disease free progression- if so at what interval? Freedom from Biological recurrence - if so at what interval? 

My observations - intended to be helpful to the original poster - are that it is actually quite difficult to get clear and unambiguous information about prostate cancer therapies since there are many variables involved and there are policies of limited disclosure in operation. 

My advice and support to the original poster - intended to be helpful -  is get as much good and reliable information as you can. I stand by that. 

I personally do not think that offering bland assurances that "all therapies are similar in terms of outcomes" to someone facing a very difficult and potentially life changing decision is helpful in the least. 

User
Posted 12 Dec 2018 at 20:43

Notabene- Apologies if you thought my positive outlook was just bland assurances. Maybe someone like myself that had a great experience with their nhs PC treatment is not the type of person this forum needs.

The original poster said everything pointed towards his PC being contained hence my figures on successful treatment for contained. 90-95% Successful means latest accepted figures for 15 years free of cancer after treatment specifically using RP or RT (about 2% difference between them). Obviously these are based on people having treatment 15 years ago so the general consensus is that 15 year rates today will be even higher with the improvement in both treatments.

I am one year cancer and side effects free but stayed posting on this forum because I thought a rare positive view would form a good balance for those just diagnosed and worried -  however I am leaving this forum now.

tony

 

User
Posted 13 Dec 2018 at 09:38

Notabene- Apologies if you thought my positive outlook was just bland assurances. 

Tony, I did not refer to you, but the post to which I originally responded. 

The data to which you refer can be criticised and as happened with my first post on this thread, one could ask for the source. But that is not my point and I am not much interested in "my data is better than yours" debate. 

My point is and remains that, being positive and supportive, it is in all of our interests, whatever our stage and condition, to try and inform ourselves as best we can. 

I hope you will not leave the forum. I believe the forum serves an invaluable purpose in bringing people together to share their experiences. Your experience is thus worth as much as anyone's including mine. 

I am glad to hear that you are cancer free and I wish you all the very best. 

User
Posted 13 Dec 2018 at 09:59

In case it is of interest, it might be worth noting that not all forms of external beam radiation therapy are the same. Proton therapy can be much more targeted and thus may do far less damage to sensitive and important tissue surrounding the tumour if it is localised. Proton therapy is not offered by the NHS for prostate cancer but it is available in several European countries as well as the US. The cost is not covered due to our EU membership, so unless one has private insurance, which may not cover it anyway, one has to pay. The cost will vary according to the extent of the therapy required, that is the number of rounds of treatment. 

The Proton Therapy Centre in Prague is extremely modern and up to date. It cannot give 5 or 10 year outcome statistics because it has not been offering prostate cancer treatment for longer than that. It is equipped with the best equipment in the world provided by a company called IBA in Belgium. 

For a localised tumour the treatment is likely to be about 5 daily sessions, thus completed in a week. At the time of writing I believe they have never had disease recurrence in the treated area for any prostate patient (obviously no one knows if this will remain true longer term).

Further information about the PTC is here: 

https://ukprotontherapy.co.uk

I do not work for nor receive any benefits from the PTC in Prague. I did receive treatment there. I have had no recurrence in the area treated. The side effects were not difficult. I have fewer and less severe long term side effects than have been described in this thread, but there are consequences to having one's prostate irradiated than cannot be ignored. 

I am not arguing in favour of this form of therapy compared with others. I am simply offering information and my own experience. I wish anyone facing these very difficult decisions all the very best. 

User
Posted 13 Dec 2018 at 10:14

Another option could be Brachytherapy - implanting small seeds of radioactive material on a temporary (inserted and then removed) or permanent (implanted and left) basis. This is offered by the NHS and has many of the same advantages over conventional radiotherapy as proton therapy, i.e. the impact on healthy tissue is minimised. 

See:

https://www.macmillan.org.uk/information-and-support/treating/radiotherapy/internal-radiotherapy-explained/brachytherapy.html 

User
Posted 13 Dec 2018 at 11:24
Thanks for your information. Do you know if you have to take H T with brachytherapy?

Thanks

Dark lane

User
Posted 13 Dec 2018 at 14:29

Hello Dark Lane 

You don't have to take Hormone Therapy at all. I don't but that is my personal decision, which is because as far as I can see Androgen Deprivation has no curative effect. Many doctors will violently disagree with this statement but so far none have been able to point me to clear evidence to the contrary. There are also significant risks with HT which are not so frequently disclosed. 

However if you decide you would like to take Hormone Therapy (Androgen deprivation) as far as I am aware there is no conflict with Brachytherapy. 

When I was diagnosed and searching for information to help me I was very interested in brachytherapy. It was proposed with a course of HT before and after. In the end I only chose another option because of the timescales. 

Also please allow me to suggest that you should not be pushed into making a decision in a matter of days or weeks, if you do not feel ready to. Waiting for months is probably not advisable, but I doubt a delay of a week or two on any treatment option would make a difference to the outcome. You being happy with your choice matters more. 

Best wishes

User
Posted 13 Dec 2018 at 15:01

Hi Dark Lane 

At the risk of being contentious - I don't intend to make recommendations, but perhaps a suggestion for how you can arrive at a decision that you feel comfortable with. 

On the web site I gave a reference to https://prostatecancerfree.org there are visual tools which compare various treatment outcomes. This data is collected from 1000s of peer reviewed medical publications worldwide. It is not intended to prove to you (or anyone) which treatment is best for you. It is intended to help you have an informed conversation with your clinicians about your choices. 

To that end, and just to see whether it might be helpful, I went to the site and compared the options of Brachytherapy or as they call it Seeds or HDR, with or without HT (or ADT as it is labelled) and surgery, both Intermediate 

https://prostatecancerfree.org/compare-prostate-cancer-treatments-intermediate-risk/

and High Risk categories. (I am not sure which you might be in but your Gleason score was 7-8 as I recall). 

https://prostatecancerfree.org/compare-prostate-cancer-treatments-intermediate-risk/

There is information on the web site about how to interpret the graphical information and each dot represents an individual published paper which you or your doctor can retrieve and refer to if it is helpful. 

The idea is that you can select, compare and then print the graphical information and use it to have an informed discussion with your oncologist or urologist. I saved these comparisons and could send them to you if you wish. 

I hope this is helpful.

Best wishes

 

User
Posted 01 Mar 2019 at 16:13

Hello   lyn,

would you think that i should still have pain in the penis and rectum area 6.5 weeks after prostate removed ? 

thanks dark lane .

User
Posted 08 Mar 2019 at 15:10

My husband sees doctors at Mayo clinic for monitoring (we are in US) there philosophy is consider the size of the prostate (not sure if and how this applies to you). If you have a large prostate you are more likely to experience significant damage to other organs (bladder etc..) with radiation so surgery is better. If your prostate is relatively small or average sized then the choice is probably preference. I am sure your doctors have already advised you about this though. It seems like mostly a personal choice.

 
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