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Robotic Surgery or Radio therapy

User
Posted 05 January 2018 12:03:33(UTC)

Hi,

I have recently been diagnosed with Prostate Cancer and am facing the agonising choice between Robotic Surgery and External Beam Radiotherapy.

I am 55 years old and in good health and fitness. My PSA is 5.1, Gleason 3+4=7 group 2, 3/6 cores, 20%, 6 mm max tumour length left side. Rights side biopsied benign.

MRI shows 2 lesions M5, anterior prostate lesion also noted, T2, N0 Mx

My consultant at Hinchingbrooke Hospital suggested the above treatment options and his opinion was that surgery might be the better choice. I was then referred to Addenbrookes Hospital to speak to the Urology team regarding a Robotic Prostatectomy and subsequently referred on to the Oncology team to discuss External Beam Radiotherapy with Hormone treatment.

All 3 consultants feel surgery over radiotherapy is the better option due to my age but it can come with the risk of some pretty unpleasant after effects. The Consultant Urologist has suggested that the right side nerve bundle will be spared but believes the left bundle will not so concerned about ED and the chances of regaining a normal sex life post op. However my primary concern is, of course, the cancer.

I would be interested to hear from anyone who has made the difficult choice between Surgery and Radiotherapy, how you arrived at that decision and whether it worked for you. I am also interested in your experiences regaining continence and erectile function post op and whether the drug/pump options were used and to what effect.

I am very, very confused and it all feels like a bit like a lottery at this point so any help is very much appreciated.

 

User
Posted 06 January 2018 09:53:25(UTC)

I had robotic January last year aged 54. My clinical stage was T2c. Gleeson 3+4 psa 6.3. I was advised surgery over bracy by my local Uro. I had full confidence in the surgeon who was excelent (addenbrooks) in both his reputation and my experience of his personality, advice, follow up etc... The option of open surgery was never mentioned by my local Uro or the Surgeon. I opted for RRP because then at least the prostate is gone and also you get a full pathological report giving more detail about the cancer. Also I think surgery after any RT is difficult or impossible. The Surgeon was only able to carry out nerve sparing on one side and we knew that in advance. He told me that it was about 50\50 chance of perminant ed. Post op pathology upgraded to Pt3 locally advanced due to extracapsuler extension. I was extremely concerned about incontenance and ed and right up until the anesthetic took over I was not convinced that I was making the right decision. Post op the catherter was removed after one week and I was dry at night. During the day was only slight leakage using level 2 pads for about three weeks and then level 1 for another 3 weeks from then on dry. ED is still a problem.
Also worth noting is my psa had been creeping up for 9 years. Had my GP referred me sooner I believe my pc would have been less advanced allowing full nerve sparring or bracy and less risk of ed.
One of my other fears was catherter removal. I was over thinking it and worried about the bladder end being pulled through the new joint after just a week. When the nurse arrived I insisted that I would pull it out myself with her supervising. She agreed without any objection. I was thinking that if I felt any resistance or pain I would be in control of the pressure applied. I was just terrified of damaging that joint. She deflated the ballon and lying on the bed I slowly pulled it out. I never felt a thing, not even the slightest sensation until a very slight awarness\feeling at the last centimetre. I had feared that moment all along and had I known I could be in contol myself would have been far less worried.
Be sure to get all of the info on all of the options then make your decision, be happy with it and dont look back with regrets.
Its difficult so take your time.
All the very best of luck with whatever you choose
Cheers Bill

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User
Posted 05 January 2018 15:49:20(UTC)

Sorry but it is a lottery, that's why the doctors don't make the decision and instead leave it up to you.

Why are you intent on robotic? Did the surgeon mention whether open surgery might be available to you as well? Robotic means less time in hospital and quicker return to work but open is slightly better in terms of long term outcomes and risk of ED or incontinence.

Also bear in mind that nerve sparing does not always indicate whether or not you end up with permanent ED. some men have full nerve sparing but never have an erection again, even with the help of a pump, tablets or injections. Many with nerve sparing can get erections with help but not naturally. Some, like my husband, have only one side saved but regain natural erections and we have one member here who had all nerves removed but has miraculously (and fortuitously) regained erections.

Basic summary - with surgery you have ED straight away and possibly incontinence as well but if you are lucky it improves over time. With RT, ED may develop over a period of years or it may not develop at all. If you are to have hormone treatment with the RT, then in all likelihood you will lose all libido and so you have to work hard not to end up with ED after the hormones are finished. With surgery, your cancer ends up in a lab dish and they can tell you exactly what it is, how much of it there was and whether they think they got it all. With RT you have to wait 5 years or so to have an idea of whether they got it all.

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


User
Posted 05 January 2018 17:30:51(UTC)

Hi very difficult time and what a decision to make. You can download the toolkit from PCUK which will give you lots of info about all treatments.
You need to do your research from reliable sources as it is only you who can make the decision as you don’t want to look back with regret.
Click on my avatar and you will see my journey from when I was at the stage you are at and just a couple of years younge than you

Bri

User
Posted 05 January 2018 17:50:53(UTC)

I was given a similar choice and opted for RT, Cyberknife which starts Monday week for 5 days, one session a day. I met a surgeon who was very keen to perform surgery, saying I was 'young, fit and slim' (sounds like a dating line) (I'm 61, active & fit and 65kg) and would be a pleasure to operate on.  It was very much a case of don't worry just leave it to me, we'll whip it out in no time and hey ho ED is easily managed (with either pumps, injections and whatever else is needed). The side effects of incontinence and ED concerned me, as well as the fact that I would be managing my own recovery. RT seemed the better option. I have been on hormone tablets for a month, once a day taken orally, which will finish after the RT. There is a significant libido loss in just that short period and I do have very sore nipples and surrounding area. I am definitely more tired, usually falling asleep before 9.30. I was concerned to read from LynEyre's post that I may not be able to avoid ED after hormone course finishes. It's a short course, so maybe I'll be lucky.

On balance though, I think the RT is preferable to surgery. 

Good luck,

Pale Rider.

User
Posted 05 January 2018 19:41:23(UTC)

Hi , click my picture and read my story. I opted for surgery at 48 but it was too late for cure. HOWEVER nearly 3 yrs on , if they’d got the cancer out , I would be in a fine place. I was continent within 3 months. I’ve had complete ED for nearly 2 yrs post op but have enjoyed sex in other ways and have tried most treatments. I’m now virtually back to normal with daily Cialis. You will lose up to 2”” off your penis length. You need to put an ALMIGHTY effort into erectile recovery and push push push for meds and treatments etc. Orgasm has never been as good as pre op and obviously zero ejaculation. But as I say life is pretty normal except I’m now incurable. I’m not familiar with long term results of RT other than itself carries long term risks and will eventually lead to ED also. I’m sorry to say there is no easy fix to prostate cancer without permanent life-changing side-effects. It has to be YOUR decision alone and you need to read the toolkit and phone the nurses for help and excellent advice. My best wishes to you and please post again as we will all help whenever




If life gives you lemons , then make lemonade
User
Posted 05 January 2018 22:19:31(UTC)

Hi Pete,

Sorry you find yourself here, but welcome.

I was in a similar position 9 months ago, PSA 9.6, T2c NoMo, Gleeson 4+3 and 3+4=7. I’m 61, reasonably fit, divorced.

I was informed of my diagnosis by a urologist and he recommended RT, even though as he said, it would be him operating on me if I went for a prostatectomy. He said this because of fewer complications post treatment.

That was the remark that steered me. So RT combined with 3+3 months Zoladex HT, with Bicalutamide to stop tumour flare. 20 sessions of EBRT, no problems.

HT caused some side effects, fatigue, night waking and insomnia.

The urologist did inform me of the risk of later complications caused by RT, 1% chance bowel cancer etc. Didn’t mention ED !

He did mention that the prognosis was similar either way. Sometimes I think that I would have preferred to have had RP to have the thing gone.

No continence issue, but post treatment was told the HT would take 5-6 months to exit my body.

I would definitely follow Brian’s advice and download the Toolkit on site here, or by post (MacMillan’s also have some good guides).

Good luck and keep in touch. G

User
Posted 05 January 2018 22:28:35(UTC)

I was 46.  Opted for robotic prostatectomy.  One year later, I've been booked for salvage radiotherapy, so I have a second chance of a cure.  No incontinence but do need injections for erections. No real regrets.  Something drastic had to be done.

Ulsterman 

User
Posted 05 January 2018 22:47:44(UTC)

Originally Posted by: Online Community Member

 I was concerned to read from LynEyre's post that I may not be able to avoid ED after hormone course finishes. It's a short course, so maybe I'll be lucky.

 

Sorry PaleRider, don't want to cause you unnecessary concern. The problem with ED after HT is for those men who are on HT for 2 or 3 years and have no erections in that time, who may then find that they have suffered penile atrophy (which is not reversible) through lack of use. Men who have surgery tend to find out quite quickly that they need and have a right to ED treatments. Sadly, few men on long-term HT are advised of the need to keep their penis exercised and even fewer are told that they have a right to ED treatments or a pump on the NHS. 

You are on such a short course of HT, I don't think it should be an issue for you. John has had surgery with only half the nerves saved, 6 months of HT and 20 sessions of high dose RT (3Gy rather than 2.2Gy) and has still regained full erectile function.  

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


User
Posted 05 January 2018 23:58:25(UTC)

Hi Pete,  You're 13yrs younger than me but I never had any doubt I wanted surgery.  Getting completely rid of the main tumour seemed a good route even if it failed.  At the time I was fully on board with the idea that you can have RT after RP but once you've had a full dose of RT you don't get anymore RT, as far as I know.  I'm not sure it's quite as big an advantage as I thought because the RT is likely only to be used if it comes back locally, as you can still go for a full dose on your bladder and full cure.  I find myself now more concerned about it spreading beyond locally partly because it was near the apex edge and 4+4 although with negative margin.  It was upgraded from 4+3 to 4+4 on inspection after the op.

Also if the surgeon has offered you Robotic surgery that is what he does.  If you want a different type of surgery from what I've read you're better going to a surgeon who does more of that type of surgery.  Although I don't think many specialise in open surgery.  An experienced surgeon is something to look for.   I met one person who agreed to have a surgeon do his first operation on him and he still had bad incontinence 2 years later. That might be bad luck, he seemed philosophical about it.

On ED I was told that one nerve bundle could be saved and it would result in weaker erections.  A year later I'm just beginning to get erections a bit weakly but I've always thought, perhaps naively that it will improve and haven't used any aids.  I tried Cialis and realised it gives me aches and I'm not keen on taking pills anyway.

On incontinence I was always dry at night but leaked in the day then it got better week by week.  Now I'm dry but can be known to slightly leak if I bend down too often too far too fast. But it's no problem as I see it.

There is more in my profile which has a link to a webpage I've written as a diary on my treatment.  I've also recently written about my op in a note in General Discussions.  Every case is different, you've a lot to think about so good luck on your choice and don't let it delay anything.

Regards
Peter

I'm just a patient and the above is just my experience and opinion.

User
Posted 06 January 2018 00:47:02(UTC)

I was 63, and opted for external beam RT.

My reasons were simple really: the side effects of surgery sounded much worse ( to me) than those of RT. I accepted three years of libido-destroying hormone therapy without a murmur - but I didn't have a partner at the time, and hadn't been sexually active for a couple of years. If I was married with a sex life, I might have chosen differently and taken the gamble with surgery.

My point, really, is that we're all different. You need to look at the likely - and unlikely - downsides of all the options, and see how they would affect your life.

As it happens, I have just had my last hormone injection, and while I've had some side effects, bar the RT and a few weeks after, when I was permanently knackered, my life has been little affected by living with cancer. I sill do the same things I ever did, if not more so, as I've been determined not let it slow me down. Weirdly, of course, having no libido - absolute zero - means I don't know what (if anything) I was missing!

I have no regrets. On the other hand, I will never know what would have happened if I'd opted for surgery!

Good Luck, whatever you decide.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 06 January 2018 02:19:07(UTC)

Perhaps you are not a suitable candidate for Brachytherapy, high dose or low dose seeds with or without the addition of External Beam RT as this does not appear to have been mentioned. However, for suitable patients studies show these forms of RT on average provide better long term results than External Beam only in combatting cancer. I would ask about this before making a treatment decision.

Barry
User
Posted 06 January 2018 09:53:25(UTC)

I had robotic January last year aged 54. My clinical stage was T2c. Gleeson 3+4 psa 6.3. I was advised surgery over bracy by my local Uro. I had full confidence in the surgeon who was excelent (addenbrooks) in both his reputation and my experience of his personality, advice, follow up etc... The option of open surgery was never mentioned by my local Uro or the Surgeon. I opted for RRP because then at least the prostate is gone and also you get a full pathological report giving more detail about the cancer. Also I think surgery after any RT is difficult or impossible. The Surgeon was only able to carry out nerve sparing on one side and we knew that in advance. He told me that it was about 50\50 chance of perminant ed. Post op pathology upgraded to Pt3 locally advanced due to extracapsuler extension. I was extremely concerned about incontenance and ed and right up until the anesthetic took over I was not convinced that I was making the right decision. Post op the catherter was removed after one week and I was dry at night. During the day was only slight leakage using level 2 pads for about three weeks and then level 1 for another 3 weeks from then on dry. ED is still a problem.
Also worth noting is my psa had been creeping up for 9 years. Had my GP referred me sooner I believe my pc would have been less advanced allowing full nerve sparring or bracy and less risk of ed.
One of my other fears was catherter removal. I was over thinking it and worried about the bladder end being pulled through the new joint after just a week. When the nurse arrived I insisted that I would pull it out myself with her supervising. She agreed without any objection. I was thinking that if I felt any resistance or pain I would be in control of the pressure applied. I was just terrified of damaging that joint. She deflated the ballon and lying on the bed I slowly pulled it out. I never felt a thing, not even the slightest sensation until a very slight awarness\feeling at the last centimetre. I had feared that moment all along and had I known I could be in contol myself would have been far less worried.
Be sure to get all of the info on all of the options then make your decision, be happy with it and dont look back with regrets.
Its difficult so take your time.
All the very best of luck with whatever you choose
Cheers Bill

Thanked 1 time
User
Posted 06 January 2018 21:37:42(UTC)
I had prostatectomy 31.03.2014 I was also 55 yrs old at the time Gleason 3 + 4 PSA 5.7 one side nerve bundles saved Was dry in couple of month's no ED issues all PSA results undetectable latest 28.12.2017 don't take anything for granted regarding this disease but so far so good. What ever decision you make regarding treatment good luck hope all turns out well
User
Posted 07 January 2018 22:05:41(UTC)

My 2 pence worth FWIW,

No Doctor?/Surgeon will ever tell you what to do or go for.

If a Doctor/Surgeon recommended a particular treatment option for you, and, it went wrong? They may be liable to being sued? That may be why they do not TELL you what to do.

My GP said to me after my choice that his dad had chosen the same and if he (MY GP) were me, he would have done the same. BUT, that was later, after I had made my choice. And even then, he may have been comforting me?

My very brief history: Age @ diagnosis 55, ZERO symptoms, routine DRE revealed hard prostate, PSA high, follow up PSA even higher, MRI = Cancer, Biopsy results = Cancer. 4 treatment options offered/suggested.

HIFU
Brachtherapy
Open surgery
Robotic Surgery

I wanted it OUT. Full stop. I did all the research, I thoroughly considered all the options, and after several hours and sleepless nights, the only solution for me was surgery, and that was bearing in mind the then successful outcome results.

Op May 2013. ED recovery November. Dry by November, unless stressed.

IF you choose surgery your POTETIAL consequences MAY be:

1. death on the table, apparently 1 in 400 my surgeon told me, as i was his 399th I was anxious!
2. ED - even though all men have the same basic bits in the same basic places, there is a randomness chance that you may get ED.
3. Bowel incontinence - even though all men have the same basic bits in the same basic places, there is a randomness chance that you may get BI.
4. Urinary incontinence - even though all men have the same basic bits in the same basic places, there is a randomness chance that you may get UI.

Bear in mind, people here tend to be those who have issues, worries, problems, seeking comfort and support and reassurance.

Many, as my GP said "We don't talk about them", get off the table immediately dry and with a hard on.

There are no guarantees either way.

You have to make your best choice on all the information available to you at the time. AT THEW TIME. And then you have to go with that. It's one dart at the bull.

And then, post op, you may find that your best choice was subsequently not your "best choice" in hindsight, but you did not know. So no point beating yourself up. That moment? It's gone.

YOU have to do what YOU what you feel most comfortable with.

Best of luck.

Dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 09 January 2018 12:03:25(UTC)

As everyone mentions here - everyone is different and its important to choose the route you are most comfortable with.

When making your choice you can go round in circles so I would advise the following ;

Whether you have surgery or radiotherapy, if your cancer is contained in the prostate your chances of complete cure are very high for both routes and to all intents and purpose both routes are equally as effective. But get it done now because once cancer has escaped from the prostate things get much more complicated.

Do not ignore the mind - some people just want to know the cancer is gone and like the idea of a surgeon "getting in there" and checking everything is removed - if this is you and you might worry if you had radiotherapy that there might be some legacy still in there after treatment then you should definitely go for surgery.

When looking at possible side effects I would suggest keeping it to the big 3 - Permanent Erectile dysfunction , lasting Bowel incontinence and lasting urinary incontinence.

The percentage chances for any particular side effect are mostly made up from figures acquired over many years an are skewed a little because until recently the number of people included in the figures were mostly older than those being treated these days. For example the chances of dying on the operating table are put at 1% - however while this might be true if you are in your 80's its not if you are fit and 60. There are no figures that tell you, for instance, if treated at age 55 for prostate cancer that the erectile dysfunction chance is 30% and at age 75 its 60% (my made up figures) - you will only be told a blanket 50% chance. It is a lottery in the end and there are no hard promises on this but if you are under 65 and fit and healthy with a good sex life prior to any treatment you are in a better place to avoid permanent side effects.

 

I am 60 (59 at diagnosis with no symptoms) PSA 30 Gleason 7 with 6 out of 10 positive cores and I chose to have 6 months hormone therapy followed by 20 sessions of radiotherapy. I finished all my treatment last friday and I will say so far its been a voyage of discovery. I would say that dont think for one moment that you will not notice any temporary side effects - there will be some whichever route you decide to take. I had complete loss of libido with hormone therapy - however my libido will return now that the hormone therapy has finished and even without libido I continued to be able to get erections (this takes a lot of concentration but its important to keep the mechanism exercised). I got severe cystisis with my radiotherapy but once again this should go and is already diminishing and again I have tried and can still get an erection. This could always change over the coming months I know but having finished my treatment I am confident of the final outcome and in a good place and happy with my choice.

Tony

 

User
Posted 09 January 2018 12:57:18(UTC)

Thank you all for your help and wisdom, it has been very helpful.

Have ordered the Toolkit from the site for more info and will be making a decision as soon as possible.

Leaning slightly towards the surgery option at the moment as family history doesn't look to be on my side.

Many thanks again for all your help.

User
Posted 09 January 2018 13:29:37(UTC)

Hi I had Robotic Surgery on the 19th September at the age of 56 and am now almost dry.
E D is coming back with the help of tablets. I don't regret it at all and feel it was the right move for me.
So far my PSA is at 0.02 go back on the 6th of Feb fingers crossed.
Andy

 
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