I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
12>

Robotic prostatectomy or Radiation Trearment?

User
Posted 09 Nov 2014 at 23:48

What a great site, thank you. I have asked to see my consultant again and have an appointment on Tuesday this week ..... when he told me I had localised prostate cancer about 8 weeks ago, although relived that the any cancer hadn't spread, I didn't really take in anything else he said afterwards.

I am approaching 59, but apparently because my Gleason is 3+4 and my PSA at the time was 13.8 (recent check shows 11.8) and despite being told the cancer was detected by biopsy (nothing felt re. DRE) in 20% of samples on one side only of my prostate I have been strongly 'encouraged' by my consultant to have robotic prostatectomy rather than radiation treatment. The hospital concerned specialises in robotic prostatectomy so, perhaps, the recommendation is not surprising! Being the inquisitive type I have searched the internet for some sort of recent comparison between robotic prostatectomy and radiation treatment and am really struggling to find anything that makes me feel one is better than the other. It seems to me that most guidance is out of date before it is written!

Can anyone please point me to a decent recent comparison ......... re. short and long term side affects of both techniques after treatment? ATM I feel fine, 'healthy' and in good spirits ..... but I know that after I have any treatment I will not feel so good and will experience some pretty nasty challenges for a period of time, the length of nobody seems to be able to forecast. That's the worst thing in my mind about being diagnosed with cancer, you can feel good and healthy before you are told ..... and then you become aware that treatment is going to make you feel pretty rough!

Any help please re. the best way forward would be so much appreciated.

 

devon lad

User
Posted 10 Nov 2014 at 08:44

I went for a RP simply because it was the quickest way of getting rid of the cancer. 6 months on PSA is still <0.01, continence has significantly improved. Still no movement downstairs - that could take 2 years - but even if nothing happens naturally, I can live with that. Better to be alive!

No regrets, but in the end, you haveto make the decision yourself.

Stay Calm And Carry On.
User
Posted 10 Nov 2014 at 09:53

I am 63 and earlier this year I was diagnosed with prostate cancer.  I had had a few weeing problems, mainly weak stream, but no other symptoms.  After a PSA reading of 7.5, the biopsy showed a Gleason of 3+4.

My first post-diagnosis consultation was with the oncologist.  She discussed with me what radiotherapy would entail and answered all my questions.  My last question to her was along the lines of if I put you on the spot what would you say was best for me.  She did not hesitate in saying surgery.

The meeting with the surgeon was equally thorough and I had an easy decision in opting for the RALP operation.

 

I felt , for me, surgery would give me better peace of mind and that it would all be over and done with more quickly.

 

The op went well, although there were a couple of minor complications afterwards.  The catheter was out after two weeks and I was dry immediately and remain so, apart from an occasional very small leak.  I am on a nightly dose of sildenafil and there are signs of life in the old boy, although not a full erection yet.  I have had two six-weekly PSA tests which showed the level was undetectable.  The next PSA test, after three months, is in December.  Of course, I am apprehensive about that but otherwise I have made a really good recovery with no restrictions on what I do.

 

I feel that, whatever happens next, that the decision to opt for surgery was right for me.  I got to the point of an undetectable PSA much quicker, I believe, than if I had opted for radiotherapy and that reduced the anxiety.

User
Posted 10 Nov 2014 at 21:45

If your inclination is for surgery, the most important aspect of this is for your surgeon to be well experienced and have good results whatever the method of surgical removal is used. Some surgeons prefer one method to another and could be influenced by the anatomy of the patient and whether nodes have to be removed for example and not all hospitals have the robot. To be a good surgeon using robot he/she has to become proficient using conventional surgery and the gain further skills using the robot. Healing time and blood loss is generally reduced with the robot. If the cancer has been found to have escaped the prostate and this is sometimes found to be the case, subsequent RT may be given. A few surgeons are prepared to surgically remove the Prostate after RT but this makes a delicate and intricate operation even more difficult. There is a greater risk of urinary incontinence with surgery.

If you wish to consider one of the several types of RT, I would discuss this with an oncologist to see which type is thought would be better in your case.

Edited by member 11 Nov 2014 at 11:29  | Reason: Not specified

Barry
User
Posted 12 Nov 2014 at 13:46

Hi devon lad,

My clinical staging was T2b before surgery ( see my profile for details )

When my surgeon spoke to me before my op he said, " it's very rare after removal and  subsequent histology report that it remains as a T2b"

He was correct,  as the  histology after surgery uprated my staging to pT2c

Obviously the biopsy core samples and MRI  had missed the PCa in one half of the prostate...

Best Wishes
Luther

Edited by member 12 Nov 2014 at 13:47  | Reason: Not specified

User
Posted 17 Dec 2014 at 10:15

Originally Posted by: Online Community Member

Fingers crossed mine was localised .First results this friday coming up .10 months on .Not a great deal of problems  they do ease with time .Roll on friday nervous but excited 

[Just to say Good luck for Friday Rontatt.

Hope you have great news in time to really enjoy your Christmas.

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 19 Dec 2014 at 19:16

Brilliant news. Very pleased for you

We can't control the winds - but we can adjust our sails
User
Posted 09 Nov 2014 at 23:48

What a great site, thank you. I have asked to see my consultant again and have an appointment on Tuesday this week ..... when he told me I had localised prostate cancer about 8 weeks ago, although relived that the any cancer hadn't spread, I didn't really take in anything else he said afterwards.

I am approaching 59, but apparently because my Gleason is 3+4 and my PSA at the time was 13.8 (recent check shows 11.8) and despite being told the cancer was detected by biopsy (nothing felt re. DRE) in 20% of samples on one side only of my prostate I have been strongly 'encouraged' by my consultant to have robotic prostatectomy rather than radiation treatment. The hospital concerned specialises in robotic prostatectomy so, perhaps, the recommendation is not surprising! Being the inquisitive type I have searched the internet for some sort of recent comparison between robotic prostatectomy and radiation treatment and am really struggling to find anything that makes me feel one is better than the other. It seems to me that most guidance is out of date before it is written!

Can anyone please point me to a decent recent comparison ......... re. short and long term side affects of both techniques after treatment? ATM I feel fine, 'healthy' and in good spirits ..... but I know that after I have any treatment I will not feel so good and will experience some pretty nasty challenges for a period of time, the length of nobody seems to be able to forecast. That's the worst thing in my mind about being diagnosed with cancer, you can feel good and healthy before you are told ..... and then you become aware that treatment is going to make you feel pretty rough!

Any help please re. the best way forward would be so much appreciated.

 

devon lad

User
Posted 10 Nov 2014 at 00:54

Hi Devon lad,
I don't think you will find what you are looking for. Statistically, for a man with straightforward T1 / T2 prostate cancer the outcomes are the same whether you opt for surgery or radiotherapy. By 'outcomes' I mean the bare bones .... risk of recurrence and likelihood of making the magical 10 years to official remission.

Comparison of side effects is more difficult - the potential side effects of surgery tend to happen immediately and then improve (for most men) whereas most side effects of RT develop later (if they develop at all) but the side effects of HT might also have to be considered. You also have to consider the emotional impact of your choice - some men are terrified of the potential risks of surgery whilst others feel that they would be unable to cope with 2 years or more of not knowing whether the RT had worked.

Just to complicate things, data on LRP v open RP also indicate that outcomes are almost identical plus the risk of side effects is the same with either technique.

Individual factors will of course affect all of the above. I think you are right to be a little cautious about your specialist's recommendation - a surgeon is more likely to recommend surgery whilst an onco is more likely to recommend RT. To expect any other would be like hoping the gas engineer will recommend an electric heating system!!! If you haven't done so already, download the toolkit from the PCUK website - I think they still have a comparison table for the different treatments. if you do see an onco, it might be worth also asking about brachytherapy and some of the other treatments such as cryotherapy.

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

User
Posted 10 Nov 2014 at 13:36

Had brackatherapy treatment in march this year ..My brother had his removed and lost quite a lot of weight .I lost none .. he goes once a month for check ups since last years . Apart from head wobbles now and then feel ok .Had all the symptons they said i would have .And slowly improving day by day no app until dec .Goodluck .he had a cathater for about 2 months or so.I had mine removed before i woke up.In at 9 am .out by 1pm ...

User
Posted 10 Nov 2014 at 20:06

I learnt more when it came to looking at salvage treatments & who likely required further treatments. Surgery offers less recurrence statistically but such figures do includes the straightforward-G6-well-contained cases which must boost success figures. We just don't know the longer-term survival  figures say 15-20 years on as we haven't got there yet. And by the time we do , both approaches will have improved even further.

Recurrence for R/T cases seems to peak around the seven/eight year mark whilst recurrence in surgery cases is often apparent earlier. But surgery recurrence can be treated earlier & that can be beneficial to survival.

 

User
Posted 10 Nov 2014 at 22:12

He is 90% there .All his weight back on , he also lives in america .We both have sons who can possibly get it later in life .My father had it in his nearl 50s .had it removed Still going strong at 77 ....So would say from my point of view  and my brothers point of view we both chose our best options .Hey if i get to almost my fathers age would take that now .I could not have it removed to there being a scar when i had my appendix out.  So was 30 days going everyday or , have it done all in one .Think i lost about 2lb in weight .And took up running .My brother was always so fit ....And still can do his boxing training .  he is 56 i am 55.......They reckon by the size of his tumour he had it a few years growing ..So my oldest brother is clear as a whistle ..Something us two are pleased about ..pretty  hereditary  in our family 

 

 

 

 

Goodluck ;-) 

User
Posted 10 Nov 2014 at 23:55

Nerve sparing was 'incremental'. One side ok, the other only partially so. I sometimes feel 6 months on I can feel the beginnings of some stirrings, but realise it is a long process. Today I have been given 100 mg sidenafil - hope to use on Thursday to see if that is any more helpful than the 50 mg dose.

Paul

Stay Calm And Carry On.
User
Posted 11 Nov 2014 at 11:47

Hi Devon Lad

 

Yes, I had the robotic (Da Vinci) prostatectomy.  The surgeon was very experienced - he had done 800 or so of these ops - so I believe that asking what the surgeon's experience is would be a good pointer.  He was able to give me the statistics for all the men he had operated on.

 

Nerve sparing was a crucial question.  He and I agreed before the op that he would spare nerves if at all possible and he thought this would be the likely outcome.  However, the agreement was that nerve sparing was secondary to removal.  In the event he spared the nerves totally on one side and partially in the other.  He told me that he would be dealing not in millimetres but cells as the margin for error.

 

 I hope that helps but please don't hesitate to ask any further questions.

User
Posted 11 Nov 2014 at 16:03
Hi

As far as RP is concerned the only way to proceed is to find an experienced surgeon and be guided by him/her, following MRI etc. I found a surgeon who was very honest and modest and advised me to consult an oncologist and investigate various options which I did and opted for robotic RP. Inspite of my age, 73 at the time, because of my good health and fitness and clear margins he was happy to operate. In the event, because of previous problem with my bladder neck, the surgery was long and complicated. Cather had to stay in for over two months and took three months to attain reasonable continence. Some nerves were spared but not enough. However, I use a pump and continue to have a very good sex life (being married for 49 years has helped, and if anything this episode has brought us closer!). Use of pump is under rated because it requires a lot of patience and understanding from your wife. It requires clear understanding of how the pump works - I am an engineer and my training helped me to deal with some of the practical problems. The biggest advantage of using a pump at my age is that erections are guaranteed! It has been three years since surgery and the PSA is undetectable.

User
Posted 11 Nov 2014 at 16:47

I must add another reason I chose RP was that 2 other members of my golf club had the procedure. All 3 of us are doing well, although one who had his op 3 years ago has to have the injections as he is unable to have an erection without. Whether the 2 others of us will need these remains to be seen. Furthermore, another sadly died a few years ago after having gone down the RT route, his cancer returned, and he died wishing he had had his prostate removed.

These are the experiences of a few of us, so there is some bias due to the experiences of others. You may hear of different outcomes - in the end it is your choice.

Stay Calm And Carry On.
User
Posted 11 Nov 2014 at 20:01

Devon_Lad,

Here's my take on the questions you ask....

(1) If the cancer is so well contained it can't be seen or felt, the prostate is not enlarged etc, etc then why not wait 1, 2 or more years before treating?

With a Gleason 4 there is more of a risk that the cancer, currently confined to the prostate, will "travel", either through the prostate, to the immediate area outside of the prostate or, by via the blood and lymphatic system, to a distant site. A PSA > 10 also puts you at a greater risk.

 

(2) If the cancer is only on one side of the prostate why not just remove that side of the gland? Now I am guessing there is a straightforward answer the this but I don't know what it is!

PCA invariably is not confined to one tumour. It can 'pop' up in a number of places throughout the prostate. It may be confined to one lobe at present but it might arise in the other lobe in the future.

 

I was diagnosed as G7 (3+4), T1b prior to my robotic prostatectomy. The true histology turned out to be G7(4+3), T2c and so I'm glad I had the op. when I did.

 

Good luck

 

Flexi

 

 

User
Posted 11 Nov 2014 at 21:51

Hi Devon Lad are you from Devon as the tag suggest if so are being offered RALP at the royal and devon in Exeter,if so this is where I had mine some 16 months ago,maybe I can give you my experience of the op.

User
Posted 12 Nov 2014 at 11:57

Hi Devon Lad

have you considered Hifu?

Roy

User
Posted 12 Nov 2014 at 17:11

When I had my biopsy, I was told my scan looked fine. if only.....

Stay Calm And Carry On.
User
Posted 12 Nov 2014 at 22:00

Originally Posted by: Online Community Member

You are correct BarrieM I currently live in Devon and my RALP surgery is booked in at the RD&E.

Only just worked out that on this site you can view each others profiles which is really useful (I'll say it again - what a great site').

What is the significance of your PSA rising slightly 2 years on from surgery?

Would love to hear about your experience ...., especially if it's a good one!

 

Not sure that having an op is a good experience,but never the less I had it,all in all it was as much as I had expected,a bit uncomfortable and bloated because of the gas afterwards but nothing untoward.

The care up to and after the op at the RDE I couldn't fault,well looked after and monitored.

Reading about others I've said before I'm lucky in so much as not requiring any drugs for erections they managed to do nerve sparing on both sides,continence is good no pads required after Dec 13.

But be prepared for disappointments on this score we are all different there have been some who have breezed through here with being dry almost immediately after having the catheter out,there are others who are struggling with continence issues 2 or 3 yrs down the line.

One thing you must be sure of and stick with is the choice of treatment,myself I chose RALP at the time because I would rather get to 70 sure of having made the right choice than get to 60 wishing I had taken  that option.

As regards the PSA rise they were unable to give a solid reason for its rise and another blood test saw it back to undetectable so who knows,they were happy for me to have a longer time until the next test which will be early in the new year.

All in all I'm fit and well and I no longer have cancer which is what it was all about.

Good luck and ask away on anything else.

 

 

User
Posted 12 Nov 2014 at 22:03

Originally Posted by: Online Community Member

Hi Luther - I have had it explained to me that once they look at the prostate after the op they could find that the cancer is of a higher grade than suggested by the original biopsy. It is reasons such as this that are pushing towards the surgery route. ATM they can't detect any cancer on the MRI scans, even the cancer detected by the biopsy.

dl

 

I had two template biops following two MRI scans neither scan showed any cancer,so for some a biop is the only detection.

User
Posted 19 Nov 2014 at 02:17

Many of us found our primary treatment choice very difficult to make, in some cases agonisingly so, made even more difficult with increased options. But it does make sense to consider all possibilities, discuss your preferences with a consultant(s). There is no reason why you should cancel your appointment for surgery on 7th Jan at this stage, you might still decide ultimately that this is your preferred primary choice. Sometimes, a patient may be suitable for a treatment but it is not mentioned because the diagnosing hospital is not able to offer that treatment. In such circumstances, the patient should ask to be referred for an alternative informed opinion.

Barry
User
Posted 19 Nov 2014 at 12:47

My consultant, a surgeon, recommended surgery. He also recommended that I see an Oncologist before making up my mind. I saw the Oncologist who suggested I have surgery and quickly.....my decision was an easy one to make thank goodness.

User
Posted 19 Nov 2014 at 13:52

I too was fortunate to be offered a choice of treatments....... Radiotherapy with associated hormone therapy or surgery. 

Surgery was the recommended route suggested  by my consultant who then referred me to a hospital and surgeon who is very experienced in robotic procedures.

Brachytherapy was not an option for me as it was felt that the size and volume of the disease was too great in my case.

I was happy to accept the risks involved  with surgery ( eg potential side effects etc ) and am pleased I took this treatment option.

The histology report following surgery gave me a much clearer picture of the extent of my disease as opposed to the RT route.

Whatever decision you make I wish you well

Best Wishes 
Luther

User
Posted 21 Nov 2014 at 14:55

I'm sure you won't regret it. Have a great Christmas and New Year in the meantime..

User
Posted 21 Nov 2014 at 15:49

Originally Posted by: Online Community Member

Well it seems my hope of exploring low dose brachytherapy further a are non-starter. Had a letter from my consultant which says:

"We wouldn't normally recommend low dose rate brachytherapy for the sort of prostate cancer that you have been diagnosed with. It tends to be used for patients with the slower growing type of tumour and lower PSA on the whole (my addition: I am Gleason 3+4 and PSA 11.8).

The Majority of men diagnosed with the sort of cancer that you have will end with robotically-assisted prostate removal as the treatment of choice".

 

“Whatever you are, be a good one.”  
―     Abraham Lincoln

That was pretty much the response I had when I inquired about Brachy....

At the time I was clinically assessed as  T2b Gleason 6 (3+3) with PSA of 9.86

I'm pleased I chose surgery and my subsequent histology afterwards confirmed in my view that I made the right choice for me..

Best Wishes for your forthcoming treatment
Luther

User
Posted 21 Nov 2014 at 15:56

Good luck Devon Lad.  I'm sure you will have many questions on the op itself, before and after the event.  I and many others who have been down this route will be able to answer those questions.

User
Posted 21 Nov 2014 at 22:31

Best of luck Brian,you'll be well cared for down at the R&D.

User
Posted 12 Dec 2014 at 17:53

There are two kinds of Brachytherapy, high dose where highly radioactive probes are inserted for a relatively brief period during an operation and low dose where radioactive seeds are placed in preselected parts of the Prostate. Either method can if considered appropriate be augmented by External Beam radiation as part of the therapy. My question would be that because either treatment is designed to kill existing tumours, what are the chances of new tumours growing elsewhere in the Prostate in due course? Although it wasn't Brachytherapy, (which is just a different form of radiation), the combined External Beam plus Particle therapy I had eradicated the tumours found on diagnosis but a new tumour has since grown in another part of my Prostate. This can't be treated with more radiation because I have had as much of it as is deemed reasonably safe. Surgery, if I found a surgeon who was prepared to do it, would now be more difficult with increased risk of side effects. So I am hoping that I will be considered a suitable candidate for salvage HIFU. However, had I opted for surgery in the first place, backed up by radiation to cover beyond where the knife could cut, now I wouldn't have a prostate where a new tumour is growing. So as well as there being the possibility of radiation initiating cancer in the long term it may not prevent new tumours growing within the Prostate in the short to medium term as in my case.   Something to take into account.

Edited by member 12 Dec 2014 at 18:18  | Reason: Not specified

Barry
User
Posted 14 Dec 2014 at 22:46

devon lad,

You have done your research and made your decision and I was most certainly not suggesting you change it, just pointing out a possibility I had failed to consider despite doing extensive research for several months before making my decision. I knew there was a small risk of RT initiating other cancers many years down the line but nowhere had I read that if all the cancer was killed within the prostate it could still start growing again within the radiated prostate, particularly within 3 or 4 years of treatment.

Thank you for your good wishes in hoping my treatment, whether HIFU or whatever, works for me and I sincerely hope your chosen primary treatment works well for you.

Edited by member 14 Dec 2014 at 22:51  | Reason: Not specified

Barry
User
Posted 15 Dec 2014 at 19:27

Hi DL,

 

You ask " It is LD Brachytherapy that I have been 'battling' to explore. Not sure anyone knows the % chances of any particular individual having a recurrence of the cancer but whether you have radiation treatment (inc. Brachytherapy) or a radical prostatectomy there is a risk that the cancer can return, usually I told this is 10 - 15 years after treatment."

My understanding from reading is ;

The chances of needing further treatment after surgery are around 30%.

After R/T around 40%

Surgery recurrence is usually seen quite quickly after as the psa is an excellent marker in that if it goes above about 0.1 and continues to rise, then further treatment is required. Usually R/T if thought local.

With R/T recurrence it is usually around a three to eight year period with psa again being the marker. Local salvage treatment may be offered but more often it is just HT. If you get to ten to fifteen years out then the chances of recurrence would be much smaller by then. Same with surgery.

 

With Brachy, there are a couple of weak points & maybe why some consultants have strict cut-off for suitability.

One is the aggressiveness of the tumour. ( Gleason & psa figures ) in that each seed is strong enough ( enough radioactivity ) to actually destroy every bad cell.

Another is volume ( size ) of the prostate. The danger is that a gap occurs between the seeds allowing cells to escape. Sometimes more seeds are used but it is a risk. Each seed only covers a certain area or distance.

Obviously, if  on the margin then again the seeds may miss cells.

 

This is not to put you off your chosen treatment by any means  but just to make you aware of some points.

User
Posted 15 Dec 2014 at 21:05

And then Rob there are those like my dad who get a recurrence 13 years post op, having been considered to be in total remission after all those years of undetectable PSA. I suppose that is why oncologists don't talk about a 'cure' - for many people it will inevitably rear its head again at some point. The best we can do is opt for the treatment that feels right and then hope to be one of the lucky ones.

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

User
Posted 15 Dec 2014 at 21:34

Devon lad my husband and as well as member Kennt and others have had low dose seed Brachytherapy.

Kennt's and our profiles are pretty up to date.

For information only of course since the decision is entirely yours.

Of course there is the possibility of recurrence, the same as with any of the treatments, as well as the possibility of bowel cancer further down the line.

It seemed to us that there were not real guarantees with any of them and the possible side effects from some of the others cancelled them out as treatment as far as my husband was concerned.

We were assured before we went ahead that survival rates for Brachytherapy equalled that of surgery.

It's horses for courses and what suits your particular form of the cancer, your lifestyle and your mental ability to cope with having the prostate still inside you.

John's prostate was small apparently and only required 58 seeds (which I must admit I personally find a little disconcerting as I expected them to zap it with a lot more)

Mine isn't a "young man" being 74 (although for some reason he's taken to doing squat thrusts as exercise - I think he's trying to kill himself some other way!!). He's (we) are still hoping for a long and relatively healthy rest of our old age.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 16 Dec 2014 at 02:08

How well treatment works for a man is a lottery. For some it provides a cure but for others sooner or later further treatment is required. Certainly, many men die at a goodly age with PCa but not because of it, in some cases not even knowing they had it. But where indicators show a need for treatment to arrest the cancer, even if it only works for a while, I am convinced that it, along with further treatment as appropriate, extends survival by differing times, albeit with varying side effects.

Barry
User
Posted 16 Dec 2014 at 18:59

Opting for the best treatment according to the known biology at diagnosis ( no-one can do more ).Providing the diagnosis is thorough enough.

Accepting the decision made was right at the time. For you.

Having consultants who are well-skilled in administering the treatment.

Not being swayed into picking the treatment just for the least likely side effects; trying to negotiate with cancer may not be wise.

Accepting that one or two stray bad cells can cause problems later on & always being watchful ( thank you psa testing ).

Always being realistic.

And luck. Definitely luck. Perhaps most of all.

 

User
Posted 16 Dec 2014 at 21:55

Thank you Sandra

I have laughed at how many times I have been called young recently (I'm 59) but I have also started to exercise more. Don't think I was unfit as such but am guessing that the fitter I am when I have any treatment the better chance I have of a speedy recovery.

dl

User
Posted 16 Dec 2014 at 22:19

Hi Rob

I am lucky that because my cancer is localised and only Gleason 3+4 (and yes I do know that it could be worse as a biopsy is only a sample) that I have had a little time to consider my options and overcome my initial fear. Think I have said before but will mention again that having cancer seems to me to be a little like the autistic scale ……. you could have cancer but be anywhere on that scale and your individual prognosis is almost unique to you.

Gleason, PSA, Staging etc are all attempts (and good attempts at that ……. thank God for them) at defining your cancer and the risks associated with it – but at the end of the day like most things in life it, and you (meaning ‘one’) is unique. Luck, well having cancer is not lucky but I agree that the advice you are given and the choices you make re. treatment have an element of ‘luck’ to them as no-one knows exactly how the cancer is going behave in the short term and after treatment.

I have studied the options inside out, and spoken to many folk and several consultants and I am convinced this is the treatment I want, if I prove to be suitable and ATM I have not been told that I am not suitable …. only that it is a viable option that in most cases would be as successful as radical prostatectomy.

Finally let’s remember that most men with prostate cancer die with it rather than of it.

Thanks for your comments, really appreciate and the help that I have had from this site.

dl

User
Posted 17 Dec 2014 at 00:17

Fingers crossed mine was localised .First results this friday coming up .10 months on .Not a great deal of problems  they do ease with time .Roll on friday nervous but excited 

User
Posted 17 Dec 2014 at 10:13

Originally Posted by: Online Community Member

Thank you Sandra

I have laughed at how many times I have been called young recently (I'm 59) but I have also started to exercise more. Don't think I was unfit as such but am guessing that the fitter I am when I have any treatment the better chance I have of a speedy recovery.

In preparation Devon Lad, towards getting fit for treatment, start doing the Pelvic floor exercises if you haven't already.

Irrespective of whatever treatment path you walk, they will be of benefit to you and the sooner they are started, the stronger your bladder will be.

Good luck

Best Wishes

Sandra

 

We can't control the winds - but we can adjust our sails
User
Posted 19 Dec 2014 at 18:49

Thanks for all replys devonlad Gooodluck . And a great thankyou to these kind of sites ......and esp christies goodluck guys  As good as clear after 10 months .Dont leave things to late in life Ron

User
Posted 24 Dec 2014 at 20:25

Yay, just what you wanted. What a Christmas present.

We are on our L.D. Brachy journey already. Hope all goes well for you.

Were you given a date yet or do you have to wait until after Christmas to find out?

Enjoy Christmas.

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 24 Dec 2014 at 22:54
Thank you Sandra. Bit much to expect to be told I have been referred and given a date on the same say!

I have been told I will be telephoned early in January to arrange a consultation.

Am chuffed x

User
Posted 24 Dec 2014 at 23:08

Excellent - you can enjoy your Christmas more relaxed now, and many more, I'm sure!!

Stay Calm And Carry On.
User
Posted 27 Dec 2014 at 14:02

Congrats devonlad ...was in and out in 5 hrs all together .http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif  Have a great newyear 

User
Posted 05 Jan 2015 at 15:14

I was startled at the number of men I talked to, in the Hospital, waiting for their RT treatment who were there because the surgery hadn't got it all.

RT is no fun for 7 weeks of treatment. They don't tell you of the torture 4 beakers of water you need to drink, in 10 minutes,  then the 40 minute wait before treatment.

I found the whole business hugely stressful and so did all the others I spoke to.

It's all over now but a week or so down the line I still need to pee 8 times a night, bowels are in a right state and the "tiredness" anticipated is more like the paralysis of exhaustion.

There were 3 months of hormone therapy before all the above, which wasn't so great.

They are not joking when they warn of breast development and weight gain around your middle. Fortunately the former can, I was told, be corrected by surgery, the later would disappear in time . 

I really regretted having taken this route until I met all those guys who had had surgery and were now hit with a double whammy, so to speak.

I cannot praise the Hospital Staff enough for their caring good humour and concern for me and my difficulties, so it's not all grief lads!

 

User
Posted 07 Jan 2015 at 01:41

Not everyone has a horrendous time with RT - John called in for his IMRT every morning on his way to work and pretty much breezed through the whole thing apart from needing a little nap some afternoons towards the end. Not all hospitals have the 4 beakers / 40 minute thing and not everyone needs an enema. John had to drink water on his way to the hospital and was usually in and out in less than 15 minutes. He didn't have any enemas.

Having said that, he was one of those for whom surgery had failed and yes, he found it upsetting to think that he could have avoided the side effects of surgery and the long haul of recovery - but hindsight is a wonderful thing.

Edited by member 07 Jan 2015 at 07:11  | Reason: Not specified

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

User
Posted 07 Jan 2015 at 16:26

Got to agree with Lyn, I also had RT (37 fractions) and absolutely sailed through it with no side effects at all. I am 100% happy that I went down this route, my first post RT PSA test was <0.2 which my Oncologist says is virtually undetectable although he still expects it to fall further.

I attended the Beatson Cancer Center where I was given three cups of water to drink, I then waited 30 mins for treatment which only lasted approximately 3 minutes. No enemas were given.

I have also been on HT since Feb 2014, and for the first six months was getting very manageable hot flushes but since then they have subsided. I currently have no side effects from HT (Zoladex LA), I have not put on weight, I have not felt emotional or weepy, I have no problems with breasts, depression or anything, up to now I have been very fortunate when I read how some other people have been affected.

I was put off RP which is a major operation due to all the many immediate side effects and no guarantees, and felt very positive about the RT route. What also made my mind up was the fact my PSA was 59, I had been told that many surgeons will not operate if the PSA is over 20 as the success rates were not as good. Also due to my PSA level they were going to give me Adjuvent RT even if I got the operation, so I thought to myself I need RT anyway, so there is absolutely no point in going through a major operation if I had as good a chance at cure with RT/HT and my Oncologist totally agreed with my reasoning.

But as has been said everyone is different, their bodies and even their minds react differently to cancer and its treatments, remember your cancer grows from your own cells and everyone has a unique DNA therefore everyone's cancer is also unique that is why it is so hard to find a one size fits all treatment. But we all live in hope.

Best wishes to ALL who are fighting or affected by cancer.

Regards,

Gerry

 

Edited by member 07 Jan 2015 at 21:10  | Reason: Not specified

User
Posted 06 Feb 2015 at 15:45

I had a similar experience. I wanted brachy but was told my prostate was too large and the seeds would close the urethra. I could have asked for active surveillance but the consultant said he would recommend an immediate biopsy under anesthetic and an annual one thereafter. At 63 I could see ahead lots of discomfort and inconvenience and then the possibility of having to take action as the tumor was growing in size. So, I decided on RP using a robot as I thought that this could be 'one off' and I could be cancer free. But also crucially in my thinking was that if I had any re-occurrence of the cancer I could fall back on radiotherapy. The advice I received at the time was that this would not work the other way i.e if you choose radiotherapy first it is very hard to remove the prostate in the future if the cancer returns.  Sadly my brother has now been diagnosed with PCa and he is going with radiotherapy as he has other medical issues that suggest he should avoid surgery.

Hope this helps 

User
Posted 12 Feb 2015 at 10:57

Hello, thanks Devonlad. We know of 3 people that have also had brachy, all had no side effects which makes me wonder why he has so many. One of them had it 12 years ago and now his psa is on the rise, it seems to return about 10-12 years later. Not sure what treatment our friend is having yet. 

We left a message at the hospital yesterday and they said the consultant will call, but he didn't. I did tell my OH to phone again today, but he said he has put up with it for 5 weeks so may as well wait now until we see him next week.

Show Most Thanked Posts
User
Posted 10 Nov 2014 at 00:54

Hi Devon lad,
I don't think you will find what you are looking for. Statistically, for a man with straightforward T1 / T2 prostate cancer the outcomes are the same whether you opt for surgery or radiotherapy. By 'outcomes' I mean the bare bones .... risk of recurrence and likelihood of making the magical 10 years to official remission.

Comparison of side effects is more difficult - the potential side effects of surgery tend to happen immediately and then improve (for most men) whereas most side effects of RT develop later (if they develop at all) but the side effects of HT might also have to be considered. You also have to consider the emotional impact of your choice - some men are terrified of the potential risks of surgery whilst others feel that they would be unable to cope with 2 years or more of not knowing whether the RT had worked.

Just to complicate things, data on LRP v open RP also indicate that outcomes are almost identical plus the risk of side effects is the same with either technique.

Individual factors will of course affect all of the above. I think you are right to be a little cautious about your specialist's recommendation - a surgeon is more likely to recommend surgery whilst an onco is more likely to recommend RT. To expect any other would be like hoping the gas engineer will recommend an electric heating system!!! If you haven't done so already, download the toolkit from the PCUK website - I think they still have a comparison table for the different treatments. if you do see an onco, it might be worth also asking about brachytherapy and some of the other treatments such as cryotherapy.

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

User
Posted 10 Nov 2014 at 08:44

I went for a RP simply because it was the quickest way of getting rid of the cancer. 6 months on PSA is still <0.01, continence has significantly improved. Still no movement downstairs - that could take 2 years - but even if nothing happens naturally, I can live with that. Better to be alive!

No regrets, but in the end, you haveto make the decision yourself.

Stay Calm And Carry On.
User
Posted 10 Nov 2014 at 09:53

I am 63 and earlier this year I was diagnosed with prostate cancer.  I had had a few weeing problems, mainly weak stream, but no other symptoms.  After a PSA reading of 7.5, the biopsy showed a Gleason of 3+4.

My first post-diagnosis consultation was with the oncologist.  She discussed with me what radiotherapy would entail and answered all my questions.  My last question to her was along the lines of if I put you on the spot what would you say was best for me.  She did not hesitate in saying surgery.

The meeting with the surgeon was equally thorough and I had an easy decision in opting for the RALP operation.

 

I felt , for me, surgery would give me better peace of mind and that it would all be over and done with more quickly.

 

The op went well, although there were a couple of minor complications afterwards.  The catheter was out after two weeks and I was dry immediately and remain so, apart from an occasional very small leak.  I am on a nightly dose of sildenafil and there are signs of life in the old boy, although not a full erection yet.  I have had two six-weekly PSA tests which showed the level was undetectable.  The next PSA test, after three months, is in December.  Of course, I am apprehensive about that but otherwise I have made a really good recovery with no restrictions on what I do.

 

I feel that, whatever happens next, that the decision to opt for surgery was right for me.  I got to the point of an undetectable PSA much quicker, I believe, than if I had opted for radiotherapy and that reduced the anxiety.

User
Posted 10 Nov 2014 at 13:36

Had brackatherapy treatment in march this year ..My brother had his removed and lost quite a lot of weight .I lost none .. he goes once a month for check ups since last years . Apart from head wobbles now and then feel ok .Had all the symptons they said i would have .And slowly improving day by day no app until dec .Goodluck .he had a cathater for about 2 months or so.I had mine removed before i woke up.In at 9 am .out by 1pm ...

User
Posted 10 Nov 2014 at 19:47

Really want to thank all of you who have commented on my post.

Lyne - the more I try to find an answer to my question re. treatment the more I realise I am unlikely to get one. I read one report with one conclusion and a few minutes later I read another report with the 'opposite' conclusion. You can buy your electricity from the gas company and your gas from electric companies so perhaps there is hope out there! As you suggest it's all very complicated.

Sixfoot - I think it's that word Cancer, instantly brings thoughts of .... just get rid of it'. It's since those initial thoughts and having time to 'think' and research the cancer (I didn't even know what my prostate did when I was diagnosed!) that I realised that this type of cancer is usually slow growing and therefore I had more time to consider the possible treatments. I agree 'Better to be alive' but therein lies the dilemma ...... which treatment will keep me alive with the best quality of life? Don't think I'll ever know! Did you have nerve sparing surgery? 

Roddy - I have read other posts mentioning that radiation specialists when confronted with the question 'what would you do' they recommended surgery. That's quite an eye opener. Your Gleason is the same as mine and our ages are similar so your experience is encouraging. Did you have robotic with nerve sparing treatment?

Rontatt - your poor brother! I think a catheter for 2 months is quite unusual, sounds as if he had a rough time. Are you both similar ages and was your diagnosis similar? Glad everything seems to be on track for you and fingers crossed that things will improve for your brother.

Once again, great site and thanks for taking the time to respond to my post. Have the appointment I requested with the consultant tomorrow and sent him a letter detailing the points I would like to discuss, may post tomorrow with details of how I got on.

devon lad http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Still smiling and enjoying life

User
Posted 10 Nov 2014 at 20:06

I learnt more when it came to looking at salvage treatments & who likely required further treatments. Surgery offers less recurrence statistically but such figures do includes the straightforward-G6-well-contained cases which must boost success figures. We just don't know the longer-term survival  figures say 15-20 years on as we haven't got there yet. And by the time we do , both approaches will have improved even further.

Recurrence for R/T cases seems to peak around the seven/eight year mark whilst recurrence in surgery cases is often apparent earlier. But surgery recurrence can be treated earlier & that can be beneficial to survival.

 

User
Posted 10 Nov 2014 at 21:45

If your inclination is for surgery, the most important aspect of this is for your surgeon to be well experienced and have good results whatever the method of surgical removal is used. Some surgeons prefer one method to another and could be influenced by the anatomy of the patient and whether nodes have to be removed for example and not all hospitals have the robot. To be a good surgeon using robot he/she has to become proficient using conventional surgery and the gain further skills using the robot. Healing time and blood loss is generally reduced with the robot. If the cancer has been found to have escaped the prostate and this is sometimes found to be the case, subsequent RT may be given. A few surgeons are prepared to surgically remove the Prostate after RT but this makes a delicate and intricate operation even more difficult. There is a greater risk of urinary incontinence with surgery.

If you wish to consider one of the several types of RT, I would discuss this with an oncologist to see which type is thought would be better in your case.

Edited by member 11 Nov 2014 at 11:29  | Reason: Not specified

Barry
User
Posted 10 Nov 2014 at 22:12

He is 90% there .All his weight back on , he also lives in america .We both have sons who can possibly get it later in life .My father had it in his nearl 50s .had it removed Still going strong at 77 ....So would say from my point of view  and my brothers point of view we both chose our best options .Hey if i get to almost my fathers age would take that now .I could not have it removed to there being a scar when i had my appendix out.  So was 30 days going everyday or , have it done all in one .Think i lost about 2lb in weight .And took up running .My brother was always so fit ....And still can do his boxing training .  he is 56 i am 55.......They reckon by the size of his tumour he had it a few years growing ..So my oldest brother is clear as a whistle ..Something us two are pleased about ..pretty  hereditary  in our family 

 

 

 

 

Goodluck ;-) 

User
Posted 10 Nov 2014 at 23:55

Nerve sparing was 'incremental'. One side ok, the other only partially so. I sometimes feel 6 months on I can feel the beginnings of some stirrings, but realise it is a long process. Today I have been given 100 mg sidenafil - hope to use on Thursday to see if that is any more helpful than the 50 mg dose.

Paul

Stay Calm And Carry On.
User
Posted 11 Nov 2014 at 11:47

Hi Devon Lad

 

Yes, I had the robotic (Da Vinci) prostatectomy.  The surgeon was very experienced - he had done 800 or so of these ops - so I believe that asking what the surgeon's experience is would be a good pointer.  He was able to give me the statistics for all the men he had operated on.

 

Nerve sparing was a crucial question.  He and I agreed before the op that he would spare nerves if at all possible and he thought this would be the likely outcome.  However, the agreement was that nerve sparing was secondary to removal.  In the event he spared the nerves totally on one side and partially in the other.  He told me that he would be dealing not in millimetres but cells as the margin for error.

 

 I hope that helps but please don't hesitate to ask any further questions.

User
Posted 11 Nov 2014 at 16:03
Hi

As far as RP is concerned the only way to proceed is to find an experienced surgeon and be guided by him/her, following MRI etc. I found a surgeon who was very honest and modest and advised me to consult an oncologist and investigate various options which I did and opted for robotic RP. Inspite of my age, 73 at the time, because of my good health and fitness and clear margins he was happy to operate. In the event, because of previous problem with my bladder neck, the surgery was long and complicated. Cather had to stay in for over two months and took three months to attain reasonable continence. Some nerves were spared but not enough. However, I use a pump and continue to have a very good sex life (being married for 49 years has helped, and if anything this episode has brought us closer!). Use of pump is under rated because it requires a lot of patience and understanding from your wife. It requires clear understanding of how the pump works - I am an engineer and my training helped me to deal with some of the practical problems. The biggest advantage of using a pump at my age is that erections are guaranteed! It has been three years since surgery and the PSA is undetectable.

User
Posted 11 Nov 2014 at 16:47

I must add another reason I chose RP was that 2 other members of my golf club had the procedure. All 3 of us are doing well, although one who had his op 3 years ago has to have the injections as he is unable to have an erection without. Whether the 2 others of us will need these remains to be seen. Furthermore, another sadly died a few years ago after having gone down the RT route, his cancer returned, and he died wishing he had had his prostate removed.

These are the experiences of a few of us, so there is some bias due to the experiences of others. You may hear of different outcomes - in the end it is your choice.

Stay Calm And Carry On.
User
Posted 11 Nov 2014 at 19:28

I'll say it again "what a great site, thank you".

Met with the consultant again today, it was a meeting I requested. As expected he was very helpful and answered all my questions, although I must confess that since I left I feel the meeting has raised more questions! I now know the following about the cancer:

Gleeson 3+4

PSA 11.8

Staging:

T1c - tumour was found in a needle biopsy performed due to my elevated serum PSA. The biopsy showed cancer cells in 20% of samples on the right side of the prostate only.

N0 - no cancer detected in the lymph nodes

M0 - the cancer has not spread to other parts of the body

The cancer was detected by DRE and wasn't seen on the MR! Scan which showed a prostate that is smooth and well defined. The size of the prostate is normal.

The planned Robotic Surgery intends to spare the nerves on the left side of the prostate and some of the nerves on the right side.

Because I already have a large scar in the area due to an operation when I was 17 there is a possibility that whilst in theatre the operation may have to be switched from robotic to open surgery but they will not know until they start the robotic surgery and apparently it is rare for this to happen (at this hospital it has happened once during robotic surgery in over 400 operations).

The consultant has conducted over 200 robotic assisted prostatectomy's, although not as many as yours Roddy it's still a good number and he mentioned that the hospital conducts the 6th highest number/year in the country. He is also very experienced at the open prostatectomy technique which would be good for me should they have to switch to open rather than robotic surgery.

It's interesting mityana that you were encouraged to see an Oncologist - should I ask to see one? The consultant explained clearly the reason why they think I should have surgery instead on some sort of radiation treatment which mainly centres around a 1 - 2% possibility of bowel cancer developing 10 years or so after the radiation treatment and if the cancer returns at a later date they won't be able to give me another dose of radiation treatment or a radical prostatectomy. I understand that further radiation treatment would be too damaging to the area of treatment and a prostatectomy after radiation treatment is difficult. However, after a radical prostatectomy should the cancer return (or they find it wasn't all removed during the surgery) they would be able to give me radiation treatment to kill off the cancerous cells. Also mityana, although it's a long way down the road for me, it's interesting what you say about the pump as I met a chap the other day who had an open prostatectomy and said that his sex life since using the pump is better than it's ever been.

The two main questions that have come to mind since meeting the consultant this afternoon are:

1. If the cancer is so well contained it can't be seen or felt, the prostate is not enlarged etc, etc then why not wait 1, 2 or more years before treating? You never know but in a few years time better stats on the various treatments may be available or some new, improved technique may become available. The consultant did suggest that the reasons for 'concern' are because my PSA is >10 and my Gleason is 3+4 but if it's not even showing signs of reaching the 'boundary' of the prostate ATM what's the rush? I hope NHS targets are not involved in timescales.

2. If the cancer is only on one side of the prostate why not just remove that side of the gland? Now I am guessing there is a straightforward answer the this but I don't know what it is!

So - I am still scheduled for robotic assisted prostatectomy sometime early in the New Year. It is delayed until then at my request so I can 'get my head around' all this stuff and I don't have to deal with any complications over Christmas. It also gives me some time to get fitter and cut down on my red wine intake!

Sixfoottwo I can see that I am going to have to join a golf club to get the best stats! Good luck on Thursday .... I'll be thinking of you .... if you know what I mean!

Thanks again for your posts - you don't know how much they have helped me and I don't feel 'so alone' anymore.

devon_lad

 

Edited by member 11 Nov 2014 at 19:34  | Reason: Not specified

User
Posted 11 Nov 2014 at 20:01

Devon_Lad,

Here's my take on the questions you ask....

(1) If the cancer is so well contained it can't be seen or felt, the prostate is not enlarged etc, etc then why not wait 1, 2 or more years before treating?

With a Gleason 4 there is more of a risk that the cancer, currently confined to the prostate, will "travel", either through the prostate, to the immediate area outside of the prostate or, by via the blood and lymphatic system, to a distant site. A PSA > 10 also puts you at a greater risk.

 

(2) If the cancer is only on one side of the prostate why not just remove that side of the gland? Now I am guessing there is a straightforward answer the this but I don't know what it is!

PCA invariably is not confined to one tumour. It can 'pop' up in a number of places throughout the prostate. It may be confined to one lobe at present but it might arise in the other lobe in the future.

 

I was diagnosed as G7 (3+4), T1b prior to my robotic prostatectomy. The true histology turned out to be G7(4+3), T2c and so I'm glad I had the op. when I did.

 

Good luck

 

Flexi

 

 

User
Posted 11 Nov 2014 at 21:51

Hi Devon Lad are you from Devon as the tag suggest if so are being offered RALP at the royal and devon in Exeter,if so this is where I had mine some 16 months ago,maybe I can give you my experience of the op.

User
Posted 11 Nov 2014 at 22:21

Hi Flexi - thank you for your post and your 'takes'.

Re. (1) - I agree .... however in the short term (at least 2 years) I understand it is unlikely to travel.

(2) - That's a really good point, thank you. My 'studies' of the subject reveal that sometimes even a biopsy doesn't detect cancer even when it is present and this often leads to another biopsy.

Your last statement is interesting and a little worrying!

Thank you again for sharing your experience.

Edited by member 11 Nov 2014 at 22:33  | Reason: Not specified

User
Posted 11 Nov 2014 at 22:31

You are correct BarrieM I currently live in Devon and my RALP surgery is booked in at the RD&E.

Only just worked out that on this site you can view each others profiles which is really useful (I'll say it again - what a great site').

What is the significance of your PSA rising slightly 2 years on from surgery?

Would love to hear about your experience ...., especially if it's a good one!

User
Posted 12 Nov 2014 at 11:57

Hi Devon Lad

have you considered Hifu?

Roy

User
Posted 12 Nov 2014 at 13:46

Hi devon lad,

My clinical staging was T2b before surgery ( see my profile for details )

When my surgeon spoke to me before my op he said, " it's very rare after removal and  subsequent histology report that it remains as a T2b"

He was correct,  as the  histology after surgery uprated my staging to pT2c

Obviously the biopsy core samples and MRI  had missed the PCa in one half of the prostate...

Best Wishes
Luther

Edited by member 12 Nov 2014 at 13:47  | Reason: Not specified

User
Posted 12 Nov 2014 at 15:19

Hi Roy - not really considered HIFU as understand it is still under trail. What hospitals currently are involved with this treatment? If cancer returns after HIFU can they then use radiation treatment or conduct surgery?

I'll look through this site at some time and see if I can find details of somebody who has had this treatment.

dl

Edited by member 12 Nov 2014 at 15:24  | Reason: Not specified

User
Posted 12 Nov 2014 at 15:23

Hi Luther - I have had it explained to me that once they look at the prostate after the op they could find that the cancer is of a higher grade than suggested by the original biopsy. It is reasons such as this that are pushing towards the surgery route. ATM they can't detect any cancer on the MRI scans, even the cancer detected by the biopsy.

dl

User
Posted 12 Nov 2014 at 17:11

When I had my biopsy, I was told my scan looked fine. if only.....

Stay Calm And Carry On.
User
Posted 12 Nov 2014 at 22:00

Originally Posted by: Online Community Member

You are correct BarrieM I currently live in Devon and my RALP surgery is booked in at the RD&E.

Only just worked out that on this site you can view each others profiles which is really useful (I'll say it again - what a great site').

What is the significance of your PSA rising slightly 2 years on from surgery?

Would love to hear about your experience ...., especially if it's a good one!

 

Not sure that having an op is a good experience,but never the less I had it,all in all it was as much as I had expected,a bit uncomfortable and bloated because of the gas afterwards but nothing untoward.

The care up to and after the op at the RDE I couldn't fault,well looked after and monitored.

Reading about others I've said before I'm lucky in so much as not requiring any drugs for erections they managed to do nerve sparing on both sides,continence is good no pads required after Dec 13.

But be prepared for disappointments on this score we are all different there have been some who have breezed through here with being dry almost immediately after having the catheter out,there are others who are struggling with continence issues 2 or 3 yrs down the line.

One thing you must be sure of and stick with is the choice of treatment,myself I chose RALP at the time because I would rather get to 70 sure of having made the right choice than get to 60 wishing I had taken  that option.

As regards the PSA rise they were unable to give a solid reason for its rise and another blood test saw it back to undetectable so who knows,they were happy for me to have a longer time until the next test which will be early in the new year.

All in all I'm fit and well and I no longer have cancer which is what it was all about.

Good luck and ask away on anything else.

 

 

User
Posted 12 Nov 2014 at 22:03

Originally Posted by: Online Community Member

Hi Luther - I have had it explained to me that once they look at the prostate after the op they could find that the cancer is of a higher grade than suggested by the original biopsy. It is reasons such as this that are pushing towards the surgery route. ATM they can't detect any cancer on the MRI scans, even the cancer detected by the biopsy.

dl

 

I had two template biops following two MRI scans neither scan showed any cancer,so for some a biop is the only detection.

User
Posted 18 Nov 2014 at 15:16

Have decided to look into Brachytherapy after discovering this useful site http://www.prostatespecialist.co.uk/home/ - not NHS but found it useful. Called the hospital I’m due to be treated at this morning and asked for someone to see me regarding the possibility of Brachytherapy. They told me I was ‘pencilled’ in for Robotic Surgery on 7th Jan but said I wanted to explore Brachytherapy further. Someone is going to phone me back I am told.

I note on this site that I may not be suitable for Brachytherapy as PSA >10 and Gleason 7 also IPSS is probably >15.

I’ll let you know what happens.

dl

 

Edited by member 18 Nov 2014 at 15:16  | Reason: Not specified

User
Posted 19 Nov 2014 at 02:17

Many of us found our primary treatment choice very difficult to make, in some cases agonisingly so, made even more difficult with increased options. But it does make sense to consider all possibilities, discuss your preferences with a consultant(s). There is no reason why you should cancel your appointment for surgery on 7th Jan at this stage, you might still decide ultimately that this is your preferred primary choice. Sometimes, a patient may be suitable for a treatment but it is not mentioned because the diagnosing hospital is not able to offer that treatment. In such circumstances, the patient should ask to be referred for an alternative informed opinion.

Barry
User
Posted 19 Nov 2014 at 12:47

My consultant, a surgeon, recommended surgery. He also recommended that I see an Oncologist before making up my mind. I saw the Oncologist who suggested I have surgery and quickly.....my decision was an easy one to make thank goodness.

User
Posted 19 Nov 2014 at 13:52

I too was fortunate to be offered a choice of treatments....... Radiotherapy with associated hormone therapy or surgery. 

Surgery was the recommended route suggested  by my consultant who then referred me to a hospital and surgeon who is very experienced in robotic procedures.

Brachytherapy was not an option for me as it was felt that the size and volume of the disease was too great in my case.

I was happy to accept the risks involved  with surgery ( eg potential side effects etc ) and am pleased I took this treatment option.

The histology report following surgery gave me a much clearer picture of the extent of my disease as opposed to the RT route.

Whatever decision you make I wish you well

Best Wishes 
Luther

User
Posted 21 Nov 2014 at 14:45

Well it seems my hope of exploring low dose brachytherapy further a are non-starter. Had a letter from my consultant which says:

"We wouldn't normally recommend low dose rate brachytherapy for the sort of prostate cancer that you have been diagnosed with. It tends to be used for patients with the slower growing type of tumour and lower PSA on the whole (my addition: I am Gleason 3+4 and PSA 11.8).

The Majority of men diagnosed with the sort of cancer that you have will end with robotically-assisted prostate removal as the treatment of choice".

A little surprise from what I have found on the net but he's the expert I suppose and I'm not going to argue with a man who will be wielding a knife over me in early in the New Year!

dl

“Whatever you are, be a good one.”  
―     Abraham Lincoln

User
Posted 21 Nov 2014 at 14:55

I'm sure you won't regret it. Have a great Christmas and New Year in the meantime..

User
Posted 21 Nov 2014 at 15:19

Thank you Martin - you too.

dl

User
Posted 21 Nov 2014 at 15:49

Originally Posted by: Online Community Member

Well it seems my hope of exploring low dose brachytherapy further a are non-starter. Had a letter from my consultant which says:

"We wouldn't normally recommend low dose rate brachytherapy for the sort of prostate cancer that you have been diagnosed with. It tends to be used for patients with the slower growing type of tumour and lower PSA on the whole (my addition: I am Gleason 3+4 and PSA 11.8).

The Majority of men diagnosed with the sort of cancer that you have will end with robotically-assisted prostate removal as the treatment of choice".

 

“Whatever you are, be a good one.”  
―     Abraham Lincoln

That was pretty much the response I had when I inquired about Brachy....

At the time I was clinically assessed as  T2b Gleason 6 (3+3) with PSA of 9.86

I'm pleased I chose surgery and my subsequent histology afterwards confirmed in my view that I made the right choice for me..

Best Wishes for your forthcoming treatment
Luther

User
Posted 21 Nov 2014 at 15:56

Good luck Devon Lad.  I'm sure you will have many questions on the op itself, before and after the event.  I and many others who have been down this route will be able to answer those questions.

User
Posted 21 Nov 2014 at 19:24

Thanks Guys - it's good to know you're there.

dl

“Don't be afraid of your fears. They're not there to scare you. They're there to let you know that something is worth it.”
― C. JoyBell C.

User
Posted 21 Nov 2014 at 22:31

Best of luck Brian,you'll be well cared for down at the R&D.

User
Posted 11 Dec 2014 at 21:07

After further research decided not to give up on the brachytherapy option as still can't see at this stage why I am not suitable for this treatment. At last managed to get an appointment with a clinical oncologist tomorrow morning.

Fingers crossed.

dl

 

User
Posted 12 Dec 2014 at 16:48
Looking good ....... oncologist agrees that I'm suitable for Brachytherapy and has referred me back to doc who can re-refer me. Fingers and toes crossed!

dl

User
Posted 12 Dec 2014 at 17:53

There are two kinds of Brachytherapy, high dose where highly radioactive probes are inserted for a relatively brief period during an operation and low dose where radioactive seeds are placed in preselected parts of the Prostate. Either method can if considered appropriate be augmented by External Beam radiation as part of the therapy. My question would be that because either treatment is designed to kill existing tumours, what are the chances of new tumours growing elsewhere in the Prostate in due course? Although it wasn't Brachytherapy, (which is just a different form of radiation), the combined External Beam plus Particle therapy I had eradicated the tumours found on diagnosis but a new tumour has since grown in another part of my Prostate. This can't be treated with more radiation because I have had as much of it as is deemed reasonably safe. Surgery, if I found a surgeon who was prepared to do it, would now be more difficult with increased risk of side effects. So I am hoping that I will be considered a suitable candidate for salvage HIFU. However, had I opted for surgery in the first place, backed up by radiation to cover beyond where the knife could cut, now I wouldn't have a prostate where a new tumour is growing. So as well as there being the possibility of radiation initiating cancer in the long term it may not prevent new tumours growing within the Prostate in the short to medium term as in my case.   Something to take into account.

Edited by member 12 Dec 2014 at 18:18  | Reason: Not specified

Barry
User
Posted 14 Dec 2014 at 17:40

Originally Posted by: Online Community Member

There are two kinds of Brachytherapy, high dose where highly radioactive probes are inserted for a relatively brief period during an operation and low dose where radioactive seeds are placed in preselected parts of the Prostate. Either method can if considered appropriate be augmented by External Beam radiation as part of the therapy. My question would be that because either treatment is designed to kill existing tumours, what are the chances of new tumours growing elsewhere in the Prostate in due course? Although it wasn't Brachytherapy, (which is just a different form of radiation), the combined External Beam plus Particle therapy I had eradicated the tumours found on diagnosis but a new tumour has since grown in another part of my Prostate. This can't be treated with more radiation because I have had as much of it as is deemed reasonably safe. Surgery, if I found a surgeon who was prepared to do it, would now be more difficult with increased risk of side effects. So I am hoping that I will be considered a suitable candidate for salvage HIFU. However, had I opted for surgery in the first place, backed up by radiation to cover beyond where the knife could cut, now I wouldn't have a prostate where a new tumour is growing. So as well as there being the possibility of radiation initiating cancer in the long term it may not prevent new tumours growing within the Prostate in the short to medium term as in my case.   Something to take into account.

Hi Barry

 

It is LD Brachytherapy that I have been 'battling' to explore. Not sure anyone knows the % chances of any particular individual having a recurrence of the cancer but whether you have radiation treatment (inc. Brachytherapy) or a radical prostatectomy there is a risk that the cancer can return, usually I told this is 10 - 15 years after treatment. I am aware that radiation isn't an option after already having radiation and that a radical prostatectomy after radiation is much trickier as it's difficult to 'prize' the prostrate away from it's surroundings once it has had radiation treatment. However, there are some hospitals that will do this. I have had it explained that usually 'younger' folk with PCa (and I haven't been called young so many times as I have recently for donkey's years!) have radical prostatectomy either because they just want the cancer removed as quickly as possible or because they have been advised to have this treatment, partly for reasons you have given above. Many centres won't perform brachytherapy on folk with my Gleason score of 7, only on 6. However I have now had it confirmed that I am eligible for brachytherapy and that it is as likely to be just as effective as radical prostatectomy would be despite the lack of 'longer term' information on 'young' guys like me (I'm 59). I know there is a risk with it returning at a later date - but this is the same with any treatment. I would like brachytherapy for several reasons, mainly that I have a large scar on my lower stomach due to an operation in my teens that may lead to them having to switch from robotic prostatectomy to open surgery at the time of the op and the fact that I am self employed and will need to get back to work ASAP after any treatment.

I would like to explore one of the new treatments that only targets the cancer rather than the whole prostate but after 'fighting' to get this far I think I would pushing my luck if I requested one of them! However in your situation I think that I would definitely press for something like salvage HIFU. I have learnt a lot of things about the NHS since I have been diagnosed with PCa and whilst I won't go as far to say that we 'are only a number' as someone said to me and I also believe that everyone that has advised me has had my best interests at heart I have also found that it is worth doing your research and pressing, where necessary, for other opinions from both surgical and clinical oncologists. I have also found this site both helpful and comforting as I expect you have.

Good luck Barry and please keep in touch.

dl

User
Posted 14 Dec 2014 at 22:46

devon lad,

You have done your research and made your decision and I was most certainly not suggesting you change it, just pointing out a possibility I had failed to consider despite doing extensive research for several months before making my decision. I knew there was a small risk of RT initiating other cancers many years down the line but nowhere had I read that if all the cancer was killed within the prostate it could still start growing again within the radiated prostate, particularly within 3 or 4 years of treatment.

Thank you for your good wishes in hoping my treatment, whether HIFU or whatever, works for me and I sincerely hope your chosen primary treatment works well for you.

Edited by member 14 Dec 2014 at 22:51  | Reason: Not specified

Barry
User
Posted 15 Dec 2014 at 19:27

Hi DL,

 

You ask " It is LD Brachytherapy that I have been 'battling' to explore. Not sure anyone knows the % chances of any particular individual having a recurrence of the cancer but whether you have radiation treatment (inc. Brachytherapy) or a radical prostatectomy there is a risk that the cancer can return, usually I told this is 10 - 15 years after treatment."

My understanding from reading is ;

The chances of needing further treatment after surgery are around 30%.

After R/T around 40%

Surgery recurrence is usually seen quite quickly after as the psa is an excellent marker in that if it goes above about 0.1 and continues to rise, then further treatment is required. Usually R/T if thought local.

With R/T recurrence it is usually around a three to eight year period with psa again being the marker. Local salvage treatment may be offered but more often it is just HT. If you get to ten to fifteen years out then the chances of recurrence would be much smaller by then. Same with surgery.

 

With Brachy, there are a couple of weak points & maybe why some consultants have strict cut-off for suitability.

One is the aggressiveness of the tumour. ( Gleason & psa figures ) in that each seed is strong enough ( enough radioactivity ) to actually destroy every bad cell.

Another is volume ( size ) of the prostate. The danger is that a gap occurs between the seeds allowing cells to escape. Sometimes more seeds are used but it is a risk. Each seed only covers a certain area or distance.

Obviously, if  on the margin then again the seeds may miss cells.

 

This is not to put you off your chosen treatment by any means  but just to make you aware of some points.

User
Posted 15 Dec 2014 at 21:05

And then Rob there are those like my dad who get a recurrence 13 years post op, having been considered to be in total remission after all those years of undetectable PSA. I suppose that is why oncologists don't talk about a 'cure' - for many people it will inevitably rear its head again at some point. The best we can do is opt for the treatment that feels right and then hope to be one of the lucky ones.

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

User
Posted 15 Dec 2014 at 21:34

Devon lad my husband and as well as member Kennt and others have had low dose seed Brachytherapy.

Kennt's and our profiles are pretty up to date.

For information only of course since the decision is entirely yours.

Of course there is the possibility of recurrence, the same as with any of the treatments, as well as the possibility of bowel cancer further down the line.

It seemed to us that there were not real guarantees with any of them and the possible side effects from some of the others cancelled them out as treatment as far as my husband was concerned.

We were assured before we went ahead that survival rates for Brachytherapy equalled that of surgery.

It's horses for courses and what suits your particular form of the cancer, your lifestyle and your mental ability to cope with having the prostate still inside you.

John's prostate was small apparently and only required 58 seeds (which I must admit I personally find a little disconcerting as I expected them to zap it with a lot more)

Mine isn't a "young man" being 74 (although for some reason he's taken to doing squat thrusts as exercise - I think he's trying to kill himself some other way!!). He's (we) are still hoping for a long and relatively healthy rest of our old age.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 16 Dec 2014 at 02:08

How well treatment works for a man is a lottery. For some it provides a cure but for others sooner or later further treatment is required. Certainly, many men die at a goodly age with PCa but not because of it, in some cases not even knowing they had it. But where indicators show a need for treatment to arrest the cancer, even if it only works for a while, I am convinced that it, along with further treatment as appropriate, extends survival by differing times, albeit with varying side effects.

Barry
User
Posted 16 Dec 2014 at 18:59

Opting for the best treatment according to the known biology at diagnosis ( no-one can do more ).Providing the diagnosis is thorough enough.

Accepting the decision made was right at the time. For you.

Having consultants who are well-skilled in administering the treatment.

Not being swayed into picking the treatment just for the least likely side effects; trying to negotiate with cancer may not be wise.

Accepting that one or two stray bad cells can cause problems later on & always being watchful ( thank you psa testing ).

Always being realistic.

And luck. Definitely luck. Perhaps most of all.

 

User
Posted 16 Dec 2014 at 21:55

Thank you Sandra

I have laughed at how many times I have been called young recently (I'm 59) but I have also started to exercise more. Don't think I was unfit as such but am guessing that the fitter I am when I have any treatment the better chance I have of a speedy recovery.

dl

User
Posted 16 Dec 2014 at 22:19

Hi Rob

I am lucky that because my cancer is localised and only Gleason 3+4 (and yes I do know that it could be worse as a biopsy is only a sample) that I have had a little time to consider my options and overcome my initial fear. Think I have said before but will mention again that having cancer seems to me to be a little like the autistic scale ……. you could have cancer but be anywhere on that scale and your individual prognosis is almost unique to you.

Gleason, PSA, Staging etc are all attempts (and good attempts at that ……. thank God for them) at defining your cancer and the risks associated with it – but at the end of the day like most things in life it, and you (meaning ‘one’) is unique. Luck, well having cancer is not lucky but I agree that the advice you are given and the choices you make re. treatment have an element of ‘luck’ to them as no-one knows exactly how the cancer is going behave in the short term and after treatment.

I have studied the options inside out, and spoken to many folk and several consultants and I am convinced this is the treatment I want, if I prove to be suitable and ATM I have not been told that I am not suitable …. only that it is a viable option that in most cases would be as successful as radical prostatectomy.

Finally let’s remember that most men with prostate cancer die with it rather than of it.

Thanks for your comments, really appreciate and the help that I have had from this site.

dl

User
Posted 17 Dec 2014 at 00:17

Fingers crossed mine was localised .First results this friday coming up .10 months on .Not a great deal of problems  they do ease with time .Roll on friday nervous but excited 

User
Posted 17 Dec 2014 at 10:13

Originally Posted by: Online Community Member

Thank you Sandra

I have laughed at how many times I have been called young recently (I'm 59) but I have also started to exercise more. Don't think I was unfit as such but am guessing that the fitter I am when I have any treatment the better chance I have of a speedy recovery.

In preparation Devon Lad, towards getting fit for treatment, start doing the Pelvic floor exercises if you haven't already.

Irrespective of whatever treatment path you walk, they will be of benefit to you and the sooner they are started, the stronger your bladder will be.

Good luck

Best Wishes

Sandra

 

We can't control the winds - but we can adjust our sails
 
Forum Jump  
12>
©2022 Prostate Cancer UK