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Choice RP or HT and RT

User
Posted 30 Jul 2018 at 19:29

Ok so 3 weeks ago I found I had a high PSA reading via a routine annual health check.

Since then I’ve had DRE, MRI and last week Biopsy. Results G7 (4+3), PSA 14.5. Cancer has not penetrated prostate capsule - I have bone scan tomorrow. My local hospital is the the Royal Marsden (lucky me!!!). I am 60 in good health.

So I have a choice robotic RP OR HT/RT. What a choice! I am looking for peoples experience thoughts observations and opinions on my alternatives. All input gratefully accepted.

One minute I favour RP next minute HT/RT. The impact of HT worries me, given it could be long term - this is based on comments I have read on this site and heard 

Consultant surgeon (a very decent guy) one of the best in the UK says it’s split decision in his opinion both options are as good as each other in terms of prognosis (which is positive) in my case. So my decision and it’s a hard one!!!

BTW I am reconciled with having cancer and I believe I am very lucky as it was diagnosed early - I just want to ensure I have quality of life for myself and wife.

 Cheers all John.

User
Posted 31 Jul 2018 at 00:55
Hi John,

As you have realized, there are pros and cons to each form of treatment and to get a better idea of these I also recommend you download or obtain from the publications section of this charity a hard copy of the 'Toolkit'

Incidentally, if the RT being offered is External Beam, it is sometimes administered in 20 higher doses (called fractions) rather than the more largely given standard 37 fractions each of 2Gy. This obviously reduces the number of attendances, one of the drawbacks to RT. However, it is becoming more usual for HT to be given for 6 months prior to RT and often for anything up to 3 years after RT depending on circumstances and response. Brachytherapy (Low or High Dose) is another way of administering RT and involves an operation. The need for 20 or more fractions of EBRT is therefore avoided, although sometimes Brachytherapy is augmented by a fewer fractions of EBRT. Brachytherapy is becoming more widely adopted but not all hospitals offer it.

Barry
User
Posted 31 Jul 2018 at 17:16

Hi John,

Have travelled this way recently and still travelling.

Bit younger than you (50 when diagnosed) with a Gleeson score of 3+3 (revised to 3+4 after removal, which is common). I was initially told that all options were open to me, so being an OCD engineer, set out to research the lot.

Longish story short, my conclusions were

HT - an Oncologist told me very definitely that no young (that meant under 70 to her) should choose HT unless they had no alternatives. I.e. Advanced disease or salvage only.

External beam RT - much the same as above.

Brachytherapy (small seed) - would have been a realistic option, though not preferred due to my age. However, with a 60cc prostate I was over the size limit without HT first (see above!) so not a good candidate for it.

AS - Another realistic option though not preferred by her due to age and also a problem for me due to unusual diagnosis path of my father. Also OCD nature would be an issue as I tend to subscribe to the view that the best place for a carcinoma is the bucket.

Her recommendation, even as an oncologist, surgery!

You then get the question of open vs. LRP vs. RARP and the various approaches. I eventually chose the RARP Retzius sparing route because it seems to offer the best chance of a rapid return to continence, though figures are similar for RS conventional after a year. Admittedly the RS method is not universally accepted as the future and at this point, getting it done on the NHS might require some effort and persistence. I had the luxury of health insurance.

Surgery done just under 7 weeks ago. Though my recovery has been untypically beset with complications (see other thread), I still think I made the right decision. Fully nerve-sparing and I'm told there is a very high confidence they got it all, organ-contained, negative margins. Just awaiting PSA result in a couple of weeks time.....

For me, in the end there wasn't really very much choice. Harder for you though by the sound of it

Nick

User
Posted 30 Jul 2018 at 21:14
If you are under Mr C or Mr O you are a very lucky man indeed.

There is no easy way to decide between the treatments, if the consultant believes that your outcome will be just as good with either route. If not already done so, download or order the toolkit from this charity and work down the list of side effects - decide which ones would be most tolerable (or least intolerable) to you.

My husband spoke to PCUK who put him in telephone contact with a couple of men that had already had treatment; he found it very reassuring to speak to someone about what it is really like after treatment. But he was only 50 and even having spoken to other men, he didn’t believe that any of the side effects would happen to him so the reality was a shock.

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

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User
Posted 30 Jul 2018 at 21:14
If you are under Mr C or Mr O you are a very lucky man indeed.

There is no easy way to decide between the treatments, if the consultant believes that your outcome will be just as good with either route. If not already done so, download or order the toolkit from this charity and work down the list of side effects - decide which ones would be most tolerable (or least intolerable) to you.

My husband spoke to PCUK who put him in telephone contact with a couple of men that had already had treatment; he found it very reassuring to speak to someone about what it is really like after treatment. But he was only 50 and even having spoken to other men, he didn’t believe that any of the side effects would happen to him so the reality was a shock.

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

User
Posted 30 Jul 2018 at 21:58

I was in a similar position to you 2 years ago. Gleason 7(3+4) and PSA 4.6. Cancer hadn't penetrated capsule although it was very close to breaking through. I had a top surgeon at The London Clinic who recommended robotic surgery but insisted I saw an oncologist for 2nd opinion. She was of the same view, so I opted for surgery, with no regrets. So it was not such a difficult choice for me. As Lyn suggested, download the toolkit, and also consider talking to someone via PCUK. I did, and it certainly helped.

Not easy, but it's good the prognosis sounds positive.

Good luck.

David

User
Posted 30 Jul 2018 at 23:42

Hi John,  Sometimes it seems my opinion is unsophisticated on this, but for me cutting it out must be the most positive thing you can do.  Yet it also seems from what we're told the results of RT aren't much different, and we take their word that like is being compared with like.  The combined variations being almost unique to each man.

With an operation you get a more accurate pathology report with your true Gleason (mine was increased to 4+4) and a measure of margin invasion and effects on other organs. Knowing this can reduce your risk and give greater happiness.  Your psa level becomes a pretty accurate representation of your health, i.e <0.0X is happiness.  If fortunate you may need no drugs, except perhaps de-coagulant for a month, ED drugs being the other most probable.  The catheter for a week isn't too great.  You may need to wear continence pads for up to a few months but after a few weeks mainly as safety first when you go out.  Usually within 6 weeks you can live more or less normally except for blood tests every few months.  Of course there is a risk that any of those things might go wrong.

RT seems attractive in that you don't have an operation and it's all out-patient.  But it seemed like hard work and wouldn't start for 3 months when it becomes 5 days a week for 6 weeks plus on-going hormone treatment and possible side effects on your colon and long term risks.  I don't know much about RT so I hope writing those things about the op doesn't paint it worse than it is.  Your Gleason and margin aren't too relevant once you've had RT but it might have been relevant before the treatment so it's good to know if the risk is lower.  Basically you've lost that evidence.  Also once you've had RT you don't get any more, whereas a person having an op can have RT for salvage and pain relief.

I decided I would sleep for 3 hours and wake and it would be largely over.  That's how it was.  I was fortunate in having no pain from the moment I woke and the morning after was walking round. Basically I hid away for a week to get great healing, with my wife driving me round and sometimes feeling a bit amused about wearing a catheter and a bag and no-one knowing.  I've never regretted it and my only worry is it might come back which is something we all have forever,  you think you could be lucky and that gets you over it.  Although I still have significant ED but have taken no treatment for it and expect it to come back to some measure.

I haven't painted too rosy a picture but have given my opinion, hope that is some help or may stimulate another opinion.

Regards

Edited by member 30 Jul 2018 at 23:47  | Reason: Not specified

User
Posted 31 Jul 2018 at 00:55
Hi John,

As you have realized, there are pros and cons to each form of treatment and to get a better idea of these I also recommend you download or obtain from the publications section of this charity a hard copy of the 'Toolkit'

Incidentally, if the RT being offered is External Beam, it is sometimes administered in 20 higher doses (called fractions) rather than the more largely given standard 37 fractions each of 2Gy. This obviously reduces the number of attendances, one of the drawbacks to RT. However, it is becoming more usual for HT to be given for 6 months prior to RT and often for anything up to 3 years after RT depending on circumstances and response. Brachytherapy (Low or High Dose) is another way of administering RT and involves an operation. The need for 20 or more fractions of EBRT is therefore avoided, although sometimes Brachytherapy is augmented by a fewer fractions of EBRT. Brachytherapy is becoming more widely adopted but not all hospitals offer it.

Barry
User
Posted 31 Jul 2018 at 08:00

Ah!!! Choices, choices, choices!

We've all been there. Many of us are happy with our final choice, but nobody is sure it was the best one.

All I can suggest is take the advice of the consultant from an outcome point of view with the objective of getting cured. Very often we get advice from them which says both approaches are as good as each other

I was very similar to you, surgery, radiotherapy or active surveillance.

So which one to choose?

I listed all the side effects post treatment, if there were side effects during treatment, for me I just decided to grit my teeth.

I wrote down a list of the potential side effects of each in order of importance for me. That's got to be a personal decision, and a reflection of what is Important to you, and your attitude to risk.

When I did this, the factor with by far the greatest impact (,for me) was incontinence. So surgery was rejected at a very early stage.

It was a close call between AS or radiotherapy. 

However, I rejected AS because my character is to get it sorted if possible and not to spend my life wondering about what's going on down there.

So, radiotherapy it was for me.

But I'm not recommending it for you, because you aren't me

User
Posted 31 Jul 2018 at 08:23
Hi John

I had RARP 18 months ago. I considered RT and Bracky but my Uro and Surgeon talked me out of it. What swung it for me was they both said:

"future surgery would be difficult if RT didn't work, at least with surgery the prostate is gone and hopefully the cancer too, you get a full pathological report and future PSA results are a good marker for the future."

Added to that I had long term been suffering from IBS so was afraid to aggrevate that.

I had an MRI scan before the Biopsy and the surgeon said he could only spare the nerves on one side and as it turned out from the Path. report I had extracapsular extension, but microscopic negative margins, so just in time I think.

Having said that right up to the aneasetic going in I was not sure and afraid of the possible out come I felt panicked and remember struggling as they put me out. My concerns were the ED and Incontinance. So take your time with your decision and make sure you are as happy as you can be with it.

My recovery has been good. I was dry over night as soon as the catherter was removed and during the day after about six or seven weeks. On going I have slight urge and frequency which are both manageable and ED which is still frustrating me, but I still hope for improvement. I am using a vacuum pump daily and 100mg viagra 16 per month.

It is a difficult decision and the Op turned out ok for me but perhaps RT would have also.

As soon as I knew I was having the Op I decided to improve my fitness which I believe helped my recovery. I am now 2.5 stone lighter and walk, jog and cycle almost every day. I believe excercise is good for your long term outcome.

See my profile for more info and keep reading on this sight.

All the very best of luck to you what ever you decide.

Cheers

Bill

User
Posted 31 Jul 2018 at 08:35

The HT alone would rule it out for me. My urologist also said the younger you are the more it sways to RP because RT side effects can emerge many years (20 +) later.

As it happened when I went in for the op there was an elderly guy opposite with no bladder as a result of RT, this made me think I had made the correct decision. Little did I know I was only a week away from a 3 week stay in ITU after I got life threatening sepsis!!

So it's all serious stuff but I am all OK now, in remission  and still happy with my decision. So RP would be my choice!

Edited by member 31 Jul 2018 at 08:39  | Reason: Not specified

User
Posted 31 Jul 2018 at 08:44

John,

I was under Mr C's care when he was at Guy's (5 years ago). He was one of the top dooderino's then for robotic surgery, and for me, I couldn't have asked for more. Sheer brilliance - and I say that even with all the side-effects!

Flexi

User
Posted 31 Jul 2018 at 10:45

Hi John,

It is difficult to decided which way to jump when two different specialists  say their way is best and I was told by the first specilists that radical removal was his option and performed at Lister with his robotic team, but i asked for a second opinion from a brachytherapy specialist that was also in the hospital that day and this was only because a friend of mine was two years plus into his Brachytherapy recovery.

I did a lot of research on line and this site to get all the pros and cons but still came back to the brachytherapy option (with my PSA and Gleason staging) that i took in the end.This was performed at Mount Vernon in London.

My PSA was 2.19 with Gleason 3+4=7 but in reverse to yours and that may make a difference to your choice of operation.

I am 22 months on from Brachytherapy with PSA down to 0.39,with blood tests extended to six months and have been handed over to my Oncology nurse for future checkups.

If you click my Avatar you can see my progress and so far very happy with lack of side affects apart from some ED backed up by Viagra but at 72 it could be an age thing.

Regards John.

 

User
Posted 31 Jul 2018 at 17:16

Hi John,

Have travelled this way recently and still travelling.

Bit younger than you (50 when diagnosed) with a Gleeson score of 3+3 (revised to 3+4 after removal, which is common). I was initially told that all options were open to me, so being an OCD engineer, set out to research the lot.

Longish story short, my conclusions were

HT - an Oncologist told me very definitely that no young (that meant under 70 to her) should choose HT unless they had no alternatives. I.e. Advanced disease or salvage only.

External beam RT - much the same as above.

Brachytherapy (small seed) - would have been a realistic option, though not preferred due to my age. However, with a 60cc prostate I was over the size limit without HT first (see above!) so not a good candidate for it.

AS - Another realistic option though not preferred by her due to age and also a problem for me due to unusual diagnosis path of my father. Also OCD nature would be an issue as I tend to subscribe to the view that the best place for a carcinoma is the bucket.

Her recommendation, even as an oncologist, surgery!

You then get the question of open vs. LRP vs. RARP and the various approaches. I eventually chose the RARP Retzius sparing route because it seems to offer the best chance of a rapid return to continence, though figures are similar for RS conventional after a year. Admittedly the RS method is not universally accepted as the future and at this point, getting it done on the NHS might require some effort and persistence. I had the luxury of health insurance.

Surgery done just under 7 weeks ago. Though my recovery has been untypically beset with complications (see other thread), I still think I made the right decision. Fully nerve-sparing and I'm told there is a very high confidence they got it all, organ-contained, negative margins. Just awaiting PSA result in a couple of weeks time.....

For me, in the end there wasn't really very much choice. Harder for you though by the sound of it

Nick

User
Posted 02 Aug 2018 at 20:21

I want to thank everyone who contributed. I had a full body bone scan earlier this week and today given all clear so cancer is contained in the prostate capsule. So after much using the toolkit and discussing with consultant I am booked for surgery in October. I feel relieved but even more strange looking forward to it. I just want it taken out of my body. My age was a big determinant and if the cancer returns I have viable solutions. I am in great hands with the Marsden team (Mr O and Mr C).

Well done and thanks all

John

User
Posted 03 Aug 2018 at 01:57
Hi John,

I was in a similar situation to you, and after discussing the matter with two urologists and one oncologist I decided on prostatectomy. I had a great surgeon, as I am sure you will at the Royal Marsden.

The post-operative biopsy found some spread to the lymph nodes, although the MRI showed the cancer as contained. I was ‘upgraded’ to T3a N1. My PSA is currently ‘undetectable’, which is great. If it does increase, I have the option of HT and EBRT to look forward to!

I am sure you have made the right decision.

Best of luck for the future.

Cheers, John

 
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