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

Notification

Error
123>

Help With Decision

User
Posted 17 Feb 2020 at 22:29

First post. Age 57. Diagnosed on Jan 14th 2020. Gleeson 7 (4+3). PSA 8.2 Bone scan clear.

I have read as much info as I can on this site, and I am truly thankful for all the contributions. They have been so helpful. I have also been through the toolkit info and am aware of treatments and side effects.

All that said, I am struggling with making a decision on RARP or RT. Both would seem to give a good chance of "cure". However if treatment doesn't go to plan then maybe RARP has better future secondary options.  But RARP seems to have more definite and immediate side effects. Also being relatively young I wonder if RT might bring trouble in later years?

How do people make this life changing decision?

Regards,

J

 

 

User
Posted 12 Jun 2020 at 16:35

Hi Andrew

Sorry for the delay in responding. 

Please feel free to check my profile and surgery journey thread.

I'm 52 and last September got diagnosed with Gleason 6(3+3) T1c with PSA 5.6.

Its one hell of a journey with massive decisions for sure. In my case I had 3T mpMRI which came back PiRADS 4 with suspect areas. A TPM showed multiple tumours in all 4 areas of the prostate although thought localised and early stage.

At the time it was quite a shock. Did the usual with asking my local surgeon about all the options from AS, Surgical, HIFU, NanoKnife, Radiotherapy, Brachytherapy, Proton Beam, Focal Laser etc etc. Most were off the table as I have multifocal disease. 

While waiting for the London MDT to review I made a point of going away....gettting blasted on beer/wine for a few days which worked well to clear my head. Then a sat down with my ex, who is an immunologist, and went through all the science and histopathology to understand what I dealing with and try an articulate some of the risks with a hope to choosing a pathway with best outcome. 

I found several papers which went through all the pathology of cancer and how it evolves over time. What I wanted to understand was even though my tumours were early stage is there any likelihood of migration plus probability of as yet undiscovered area's of higher grade cancer. 

I found several papers which mentioned in active surveillance studies it has been shown metastases had occurred. Also there was early evidence that low grade cancer, although very stable in situ, can give rise to spread. This research is still fairly recent so more data needs to be collected in terms of were the type 3 cells directly involved in the spread or were there clinically undetectable regions of higher grade involved. 

At this point it was looking like surgery was the only sensible option in my case. However, I was mindful of impact in terms of ED, being sterile and possible incontinence. 

The next step was a second opinion. I looks high and low for well known high volume (>100 prostatectomys per year)  surgeons with greats stats. Fortunately I reached out on this discussion forum and via my local support group. This proved invaluable and for me a game changer.

Via several folks on here and in my local area I found a great surgeon based up at London Bridge (via private) - Prof Whocannotbenamedonhere. I did the usual extensive checks outside the personal recommendation and his credentials ticked all the right boxes plus I learnt about a relatively new approach to prostatectomy - retzius sparing robotic assisted radical prostatectomy + NeuroSAFE. 

This appeared to mitigate most of my concerns around potential post-op continence although ED issues still seemed to be a factor which was mixed. NeuroSAFE made a lot of sense in terms of optimum margins as a pathologist analyses' your prostate resections in real time while you are on the surgical table thus increasing chances of proper safe margins. 

I met up with the Prof first week of November and from the moment I met him knew he was the surgeon I wanted operating in such a high risk area. He agreed with my concerns that even though I had low grade gleason 6 cancer early studies showed its not as safe as one might hope. Plus in my case as all four quadrants were involved its likely ~60% that post surgery my histology would be upgraded.

I booked surgery for end of November. Went in the night before and stayed at a hotel next door then it was 7am check-in for surgery. Everything was very smooth end to end. During surgery it was found that the tumours were more extensive than had been shown via biopsy/MRI so following a couple of cautionary flags from NeuroSAFE one nerve bundle was partially taken and a bit more tissue at the base. So in effect my surgery was 3/4 retzius sparing and 1/4 alt retzius. Given it was slightly more complex made me even more thankful I had found one of the top UK/EU surgeons and he was confident of a good outcome. 

Post surgery I had no pain and was also lucky to not need a stomach drain as there was no significant bleeding to manage. The prof mentioned my timing for having surgery couldnt have been better as the cancer was very close to breaking through the capsule and had I waited a few more months might have been a totally different story.

Couple of days later I was released and then I had the wait for post surgery histology results. As it turned out these were very good and showed all margins clear. Final grading was G7(3+4) T2c. So the profs hunch there would be medium grade tumour was correct and hopefully removed before any micro metastasis had occured....time will tell.

I made a good recovery. Urinary catheter was out after 14 days and i had pretty good continence from the outset. A few leaks and drips until week 5 where the surgical stitches start to soften and allow the sphincter to close more completely. Up to week 12 I had a few stress leaks. A couple of partial wettings at night after a shin full of beer. But other than that totally dry and not used pads since week 7 albeit for PSA testing when I am so nervous I dont trust my bladder until its over :-)

To my delight very early on post op I started to see signs the old chap wasn't flaccid after all and there were signs of life. 4 weeks after surgery I was able to have penetrative sex and to date have good performance. I would say tiredness affects its more than pre-op. But if I'm awake and refreshed its as good as before. Add 2.5mg tadalafil to the mix and the performance of my twenties returns.

Only glitches I've had are pelvic floor discomfort which will settle over time. Please a couple of bladder voiding issue which were concerning at the time but I isolated the triggers...coffee/hot curry. Since then its settled.

PSAs since have been undetectable so thus far my outcome has exceeded my expectations.

Obviously with any surgery the outcomes vary on a case by case basis. For me Retzius Sparing RARP + NeuroSAFE worked very well plus the choice is surgeon was a game changer. Longer term who knows but for now its positive and a totally different place to where I was pre-surgery.

Shout or PM if you need more but I hope this helps give some reassurance and detail which can be fed into the mix with your decision process.

Simon

 

User
Posted 15 Dec 2020 at 00:03
I think the data suggests that a genetic fault is present in around 5% of prostate cancers - these include BRCA1, BRCA 2 (white men and particularly Ashkenazi Jewish men) but also others such as HOXB and some that seem specific to African Caribbean men but are not yet proven. The last time I was at the GP surgery with Dad, I noticed they had a big poster encouraging Jewish patients to book a PSA test, especially if they were of Ashkenazi heritage, because of the increased risk of carrying BRCA1/2.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2020 at 00:13
Okay - if you were my brother or partner I would want to know the following at the appointments:

- I would ask both specialists whether they have used the nomograms to predict your chance of full remission with their treatment option and, if so, what that predicted % is

- I would ask the surgeon whether the RP would be nerve sparing

- I would also want to know how often s/he does RPs

- ask the onco whether s/he proposes to use HT with the RT and if so, how long for

- ask the onco whether brachytherapy is on or off the table and whether or not SpaceOar would be available to protect your bowel

You should be able to look up the surgeon's stats on the BAUS website - all urologists undertaking RPs are supposed to publish although some of the bigger personalities somehow avoid doing so. If you do look up the outcomes, keep in mind that some surgeons cherry pick their cases; if a surgeon takes on cases that some others wouldn't touch his results for recurrence will look a little higher than others but his continence, ED and positive margin % may be excellent.

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

User
Posted 18 Feb 2020 at 07:30

I went down the RARP route. Would recommend Retzius sparing RARP + neurosafe if you can choose. Plus check surgeon stats as you ideally want high volume ie > 100 ops per year. 

TG

User
Posted 18 Feb 2020 at 08:01
I took the HT/RT route and have found it relatively plain sailing. Everyone reacts differently to HT in terms of side-effects. I was fortunate to have very few.

Best wishes,

Chris

User
Posted 18 Feb 2020 at 10:04

Personal decision as always. I went the RT route and my personal fear of the knife was a big factor but I emphasise personal. What finally swung it in favour of RT was that the surgeon was honest enough to admit that, in my case, nerve sparing would almost certainly not be possible. It's a question you need to ask.

As I am now requiring further treatment it might be a legitimate question to ask if I would make a different decision in hindsight. The recurrence is in an area that would not have been removed by surgery so I would be in the same position as I am now so I remain comfortable with my decision.

I am actually having more radiotherapy because the recurrence is far enough away from the prostate (which remains cancer free). See my profile for details.

Both treatment paths are viable options for treating the disease.

Just to add - the RT side effects for me were relatively mild. I had to be with in close proximity of a toilet for about 2 months after the treatment finished (bowel irritation) but this resolved itself.

Edited by member 18 Feb 2020 at 10:07  | Reason: Not specified

User
Posted 18 Feb 2020 at 16:01
Just to expand in one small area on the excellent list of question Lyn suggest, when it comes to RT, whereas some hospitals treat with what has been the standard 37 fractions each of 2 gy, there is a growing number treating with 20 fractions each of approximately of 3gy which though not the same by total gy give very similar results and near enough side effects. Fom the patients perspective this saves more visits and the RT is completed earlier, so worth asking.

Having studied the 'Tool Kit' and replies here and from your consultants, it really is down to you to weigh everything up and make your personal treatment decision.

Barry
User
Posted 18 Feb 2020 at 17:41

I watched Professor Whocannotbenamedhere’s pre-op video in full, despite having been there, done that.

Very informative, and I would recommend it to anyone considering surgery.

I note the Prof. is off to an international symposium shortly, with the other two world-renowned Retzius-sparing surgeons, the Italian Whocannotbenamedhere and the Korean Whocannotbenamedhere.

If you, like me, are interested in the gory details of the surgery, the Prof. has provided a video of what Da Vinci gets up to during his assault on your sexual organs:

https://youtu.be/kX777A8El18

I watched all the way through, but sadly there was no “money shot” at the end, which of course will be the case for the rest of that patient’s life.

Enjoy!

Cheers, John.

Edited by member 18 Feb 2020 at 18:18  | Reason: Not specified

User
Posted 18 Feb 2020 at 20:42
I went down the RARP route plus neurosafe, with the thought process that I would then have some other options left should they be needed in the future.

I think the final decision very much comes down to your own personality and your ability to cope with the side effects of each treatment.

This site is invaluable.

User
Posted 20 Feb 2020 at 13:18

Predict Prostate is the NHS nomogram - % chance of a 15 year survival is okay because the NHS nomogram doesn't address remission data, only survival. Full remission would be 10 years without recurrence.

You can put your own numbers in here https://prostate.predict.nhs.uk/ 

and here https://www.mskcc.org/nomograms/prostate/pre_op 

 

I have put your numbers in as far as you have posted these - according to the nomograms you have a

- 80% chance of still being here in 15 years if you have RT / HT

- 71% chance of still being here if you opt for active surveillance

- 24% chance of still being disease free in 10 years if you have RP

Easy to see why they are recommending RT but if you are playing with the MSK nomograms, keep in mind that outcomes in the UK are slightly worse than in New York, and are worse in the North of England than in the Home Counties. 

Edited by member 20 Feb 2020 at 13:40  | Reason: to activate the hyperlink

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

User
Posted 20 Feb 2020 at 13:24
Hi Boy,

These are the nomogram prognostication tools they all use, from the medical college in the States. In fact I had my forecast on my iPad when I saw an oncologist, when he turned his screen to me I turned my screen to him to show a mirror image!

https://www.mskcc.org/nomograms/prostate

I have three friends who underwent prostatectomies at the same time as me by the best and most experienced surgeons money could buy, and I am the only one who has not suffered recurrence. Both my mates have been on subsequent RT and HT, known as adjuvant treatment.

I have been to one of the top prostate oncologists in Britain, and he said at T3a, “You won’t die of it”. I think the nomogram says I have a 98% chance of survival for 15 years.

So, best of luck. I hope you survive for ever😉😉😉😉

Cheers, John.

User
Posted 20 Feb 2020 at 14:50
My two friends had the RT & HT (one is ongoing with HT, I believe) but they both now have undetectable PSA the same as me, and are doing fine. Our surgeries were all around eighteen months ago.

Two out of three is not ‘stats’, just my immediate my contacts.

You are entitled to second opinions from a surgeon, and from an oncologist, so go for that, and weigh up what they all say before you decide what to do.

Cheers, John.

User
Posted 20 Feb 2020 at 16:40
Ah, I misunderstood your post - I read it that they had ruled out surgery and were recommending RT / HT.

If you are yet to see the surgeon, it will be important to clarify whether the op would be nerve sparing or non nerve sparing.

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

User
Posted 20 Feb 2020 at 16:51

Two very similar diagnosis, mine and a friends both with TA3. He had open surgery, needed blood transfusion and had some other probs. Because of rising PSA subsequently had HT/RT and 12+years on has non detectable PSA. He regrets having had surgery on assumption that the RT would have done the job.

My situation: Told by same surgeon who removed my friend's prostate that he doubted being able to remove all my cancer by surgery and recommended RT instead. At 2 years and minimal side effects seemed RT was a good decision but PSA started to rise persistently and with tumour subsequently found within prostate had HIFU and may have to have repeat HIFU or something else. I was told a Prostatectomy now would almost certainly lead to permanent incontinence.

Of course there is not assurance that had I gone the same route as my friend I would have had the same result but with the benefit of hindsight I would rather gone his route, at least I would not be facing further treatment to my Prostate now, and with likely more side effects.

Edited by member 20 Feb 2020 at 16:53  | Reason: Not specified

Barry
User
Posted 20 Feb 2020 at 21:54

Hi BB

sorry only just seen your question.

Mainly age and the impact of any RT at my age of 52. Plus potential negatives on bowel and bladder. My view while thought early stage(ish) and localised to look at surgical options. When I found out about the Prof and Retzius Sparing approach RP and neurosafe and the stats is made me more confident total removal was the best option for me. I figured I would probably lose my mojo and have a very good chance of regaining continence. As it happens I’m lucky as got both back same as pre-op (albeit dry climax). I’m now just over week 12 post op and starting back down the gym and getting back to relative normality in terms of jobs/tasks etc 

btw you can see anyone you choose via NHS Choices. 

Best of luck with your journey and it’s not an easy one and blew my mind quite a few times. Research and talking to folks that had been through various procedures was immensely useful in helping define which direction I’d take.

TG

User
Posted 02 Apr 2020 at 21:00

Hi Littlewren. 

For what it's worth. I have tried to engage specialist nurse, surgeons secretary, and nurse that gave surgery school.

It might also be helpful if you provide more detail on your OH, in terms of PSA, Gleeson, staging. So much experience on this community to advise if you provide details.

J

User
Posted 07 May 2020 at 21:10
I had PSA of 9.5 and Gleason 3+4. Didn't get a staging, but it didn't matter as RARP was my only option - everyone agreed that RT with my Ulcerative Colitis (even though it's mild) would ruin my quality of life. At 68 I'm probably older than normal for RARP, but I don't have any other health issues, so the consultant wasn't worried. TBH given the option I would still have plumped for RARP, because my wife has had RT and had several side effects and I also prefer to know quickly if the procedure was a success.

Luckily got mine done just ahead of covid and have been told that PSA is undetectable and I had negative margins. However there was no nerve sparing on the left hand side. Continence-wise I've been dry all night from the beginning, and the consultant says I have good pelvic floor (not the slightest bit of stress incontinence), but I can have "urge" incontinence. Physio says that because my prostate was so big, I now need to re-train my bladder. I'm told it will probably take some months to sort out ED; we'll have to see.

In your position, providing that you are reasonably fit and healthy otherwise, I would have thought that the only real issue with RARP would be whether they can spare the nerves both sides. If so and at 57 you should have good outcomes, but of course nothing is guaranteed. You wouldn't normally expect bowel problems with RARP (unlike RT) unless you were very unlucky (i.e. your prostate was squashed up against your intestine, if I recall my chat accurately).

User
Posted 12 Jun 2020 at 16:56

Originally Posted by: Online Community Member

In a nutshell, I'm 58 with PSA level of 7.2. Gleeson score of 6 (3+3) and T3a.

Consultant outlined options to be surgery or radiotherapy.  My case is being discussed again on Friday and consultant to phone again next week to confirm they still feel it to be T3a (it would seem that the 2 biopsies I've had aren't entirely conclusive).

I'm now struggling with which way to jump ... part of me thinks that surgery would give a better outcome, but it also seems so final ... and I'm worried about side effects. But radiotherapy doesn't seem much better ...

It is usually the scans that determine whether a man is T2 or T3a - but if they are looking at your biopsies again, it may be that some of the cores were showing cancer right at the top of the sample. If it is indeed a T3a, I think your doctors will explain that although RP and RT seem quite final, you actually need a (hopefully) quite final intervention. Sometimes, a man with G6 will be encouraged to look at active surveillance or less radical treatments but T3 is not to be messed with. 

As I just posted elsewhere, the hierarchy of decision making could be described as 

- with the advice of the MDT, choose the treatment that gives you the best chance of full remission

- decide whether you can live with the known and potential side effects - if yes, happy days

- if no, work out which side effects are least acceptable to you and then opt for the treatment that minimises these risks while still giving a reasonable chance of remission

Some side effects are guaranteed for any treatment - dry orgasms (sooner or later) and being infertile, for example - while others are more likely with some treatments than others. But keep in mind that one potential side effect of treatment is to get rid of the cancer. The PCUK toolkit includes a pros/cons sheet to help you prioritise the different side effects or treatment. 

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

User
Posted 12 Jun 2020 at 17:01

Hi Andrew. Apologies for delayed response.

I have found the decision very difficult. In the end I have opted for surgery. If the cancer is contained, then hopefully  the surgery will be the end to it. If not, then there is the option of RT and HT. 

I was told that if I went down the RT route then it would be with 3 years HT, and didn't fancy that as my first option.

All the best with your decision.

J

User
Posted 14 Jun 2020 at 11:50

Time for an update (14/6/2020). I will also add to my profile.

I've been on 150mg/day of Bicalutamide for just over 8 weeks. My observations of side affects:

1/ Very tired some days. Usually solved with a nap.

2/ Feeling sick on the odd days. Car sick feeling too. 

3/ Libido much reduced. Also much more difficult to get and maintain erections. Orgasm's weaker.

4/ Weight increasing gradually and particularly around chest. Nipples sensitive.

All in all not too bad, but I wouldn't like to be long term on HT. On a positive note, I have a surgery date of 25th June.

J

User
Posted 14 Jun 2020 at 14:57

Hope all goes well on 25th June. You will be glad to get that over and done with.

Ido4

User
Posted 15 Jun 2020 at 16:50

I had the surgery March 2019...all told despite some discomfort and a few changes I have recovered very well! I would try not to worry too much if you can...they will look after you and then you can start getting back to as near normal as possible!

User
Posted 15 Jun 2020 at 16:59

As Mark says it’s not as bad as you think. All over pretty quickly and you are home before you know it. Recommend taking some lactulose with you just in case you get constipation. Full length size zip trousers are good for management catheter bag on the way home post op. I wore mine all the time until it was removed at 14 days. Get a Builders bucket to stand you bag and stand in at night as keeps it extra stable. I also got waterproof protectors and tena sheets for the bed but did need them. If you are going private recommend a media player with extension power adapter and long hdmi lead :-)

Please keep us posted.

Simon

User
Posted 15 Jun 2020 at 17:42

Good luck. I had my RP March 23rd- so 12 weeks ago today. As others have said its not too bad- just take it easy afterwards. I'm running and cycling again and life just about back to normal.

User
Posted 18 Jun 2020 at 22:45

I am 63. My RP was done sept 18. I was T3. All my follow up tests have undetectable PSA. I now live a normal live as if it never happened. Even my ED is dissipating and I can now have penetrative sex (took at least 12 months to come back to life lost about 60% of nerves). Keep exercising and do your pelvic floor exercises - a great investment into future recovery. For actual recovery be patient, follow the guidance given, start walking early in recovery but don’t over do it. When the nurses advise restart pelvic floor exercises - the stronger these muscles are the better your bladder control. Any pain is treatable by paracetamol- after 3 days post surgery you’ll see daily improvement.

i have not regretted my decisions.

User
Posted 19 Jun 2020 at 17:42

Good luck J ... hope all goes well next week.

Andrew

User
Posted 29 Jun 2020 at 18:55

Glad to hear it went well.

Once the catheter is out you will be well on the mend 

User
Posted 01 Jul 2020 at 06:30
I didn't get given anything, so it was lucky that I had brought my own. This was just before lockdown though, so they had other things on their minds. I also pinched one of their sample bottles, as we had over an hour's drive back.

On the pelvic floor exercises, I got the NHS Squeezy app. They do 10 slow, 10 fast as one exercise. Slow is 10 seconds, although the app lets you change the settings. Prior to the op I was doing these 6 times a day (1 as situp) as I wanted to build the muscles up. Now I do 3; the surgeon said that was plenty, as I've not had any stress leaks. Like others, farting has been a problem if I "force" the fart - I guess it's incompatible with tightening the pelvic floor.

User
Posted 01 Jul 2020 at 23:17

Great news BB

Pelvic floor helps loads especially as you get used to engaging them for coughs and sneezes. This soon eases over time. Initially I found I leaked more in the evenings than during the day I guess due to tiredness. 

Don’t be too concerned as everything soon settles. My leaks pretty much stopped bang on five weeks when the stitches started dissolving around the reconstructed urinary sphincter. Mainly as the valve can close tighter given the stitches can tent to hold it under a slight tension. Additionally the scar tissue will then start to soften over the coming months improving things further.

Shout if you have any problems or questions. 

TG

Edited by member 01 Jul 2020 at 23:21  | Reason: Not specified

User
Posted 02 Jul 2020 at 07:24

Originally Posted by: Online Community Member

Catheter out today. Small dribble. Pleasantly surprised how well I can hold in, but need to keep concentrating on it. Tena 3 less of a fuss than I had imagined. 

Many leaks along the way. Getting out of car, passing wind, bending over. 

Onwards with the pelvic floor exercises!

Glad it went well. Enjoy being bagless. 😀

User
Posted 20 Nov 2020 at 09:41

Hi Jim.

Good to hear from you. Glad your surgical recovery has gone well and that the plumbing is working. Sorry to hear about your PSA rise, but once those little bastards get starved of testosterone and zapped it should go very low. 😀

User
Posted 14 Dec 2020 at 20:08

From why I read BRCA is prevalent in around ~5% prostate cancers. If memory serves me right is a genetic error which stops cell apoptosis (pre programmed cell death) when a genetic mutation makes it potentially cancerous.

hope the results come back favourably but like you in a big fan of visibility and awareness rather than flying blind. Roll on immunotherapy...it’s coming and lots of work being done in the US on next gen CAR-T with negating a tumours immunosuppressive properties in hiding from the immune system. 

Edited by member 15 Dec 2020 at 01:22  | Reason: Added keyword ‘prostate’. Thanks Lyn!

Show Most Thanked Posts
User
Posted 17 Feb 2020 at 23:05
If you have ordered the toolkit from this website, it includes a pros and cons sheet where you can list the things that are most important to you and the downsides of each option - it helps some people.

I assume you have seen both a surgeon and an oncologist to discuss the treatments and the predicted outcomes for you. Are both specialists saying that they have an equal chance of working? ow long does the onco say that you would be on hormones for, and which hormone? That is significant for the following reasons:-

- surgery has immediate side effects but most will improve, and for some men the improvement is rapid

- RT can have the same side effects but these might emerge some years later; for a small number of men there are also immediate short term side effects like bladder irritation

- HT can have almost immediate side effects or they can develop over a period of time; as a general rule, they take the same amount of time to disappear as the time you were on the hormones

- there are focal treatments such as HIFU but these don't have a good track record as a primary treatment and may need to be repeated

The research into cancers caused by RT suggests that the risk of bowel cancer is increased by 4% for men that have had pelvic RT. However, that is an increase of 4% on a general risk of 5% of the population - most people would think that is worth a chuck of the dice to eradicate their prostate cancer

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

User
Posted 17 Feb 2020 at 23:16

Thanks LynEyre. Very helpful.

Onco on Wed. Surgeon a week on Thurs. So there might be more info to come. Going on feedback from MDT for now.

Thanks again for taking the time to respond and as you so often do for folks on this site. 👍🙂

User
Posted 18 Feb 2020 at 00:13
Okay - if you were my brother or partner I would want to know the following at the appointments:

- I would ask both specialists whether they have used the nomograms to predict your chance of full remission with their treatment option and, if so, what that predicted % is

- I would ask the surgeon whether the RP would be nerve sparing

- I would also want to know how often s/he does RPs

- ask the onco whether s/he proposes to use HT with the RT and if so, how long for

- ask the onco whether brachytherapy is on or off the table and whether or not SpaceOar would be available to protect your bowel

You should be able to look up the surgeon's stats on the BAUS website - all urologists undertaking RPs are supposed to publish although some of the bigger personalities somehow avoid doing so. If you do look up the outcomes, keep in mind that some surgeons cherry pick their cases; if a surgeon takes on cases that some others wouldn't touch his results for recurrence will look a little higher than others but his continence, ED and positive margin % may be excellent.

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

User
Posted 18 Feb 2020 at 07:30

I went down the RARP route. Would recommend Retzius sparing RARP + neurosafe if you can choose. Plus check surgeon stats as you ideally want high volume ie > 100 ops per year. 

TG

User
Posted 18 Feb 2020 at 08:01
I took the HT/RT route and have found it relatively plain sailing. Everyone reacts differently to HT in terms of side-effects. I was fortunate to have very few.

Best wishes,

Chris

User
Posted 18 Feb 2020 at 10:04

Personal decision as always. I went the RT route and my personal fear of the knife was a big factor but I emphasise personal. What finally swung it in favour of RT was that the surgeon was honest enough to admit that, in my case, nerve sparing would almost certainly not be possible. It's a question you need to ask.

As I am now requiring further treatment it might be a legitimate question to ask if I would make a different decision in hindsight. The recurrence is in an area that would not have been removed by surgery so I would be in the same position as I am now so I remain comfortable with my decision.

I am actually having more radiotherapy because the recurrence is far enough away from the prostate (which remains cancer free). See my profile for details.

Both treatment paths are viable options for treating the disease.

Just to add - the RT side effects for me were relatively mild. I had to be with in close proximity of a toilet for about 2 months after the treatment finished (bowel irritation) but this resolved itself.

Edited by member 18 Feb 2020 at 10:07  | Reason: Not specified

User
Posted 18 Feb 2020 at 12:13

I found this video very helpful if you're considering RARP: https://www.santishealth.org/prostate-cancer-information-centre/top-10-tips-for-patients-considering-a-robotic-radical-prostatectomy/

User
Posted 18 Feb 2020 at 12:31

Thanks Peter 51. That is a really helpful video.

User
Posted 18 Feb 2020 at 14:57

Thanks TechGuy. I don't think I will have all the choices you talk about as NHS doing. Will enquire though.

May I ask why you opted for RP rather than RT. Just curious on thought process.

Cheers,

User
Posted 18 Feb 2020 at 14:59

Thanks Cheshire Chris. Sounds very positive. All the best going forward.

User
Posted 18 Feb 2020 at 15:01

Thanks LynEyre. All good information that will take into the discussions with Onco and Surgeon. 

User
Posted 18 Feb 2020 at 15:04

Thanks Pete48 for your detailed response. Am I right to conclude you have no ED or continence issues?

User
Posted 18 Feb 2020 at 16:01
Just to expand in one small area on the excellent list of question Lyn suggest, when it comes to RT, whereas some hospitals treat with what has been the standard 37 fractions each of 2 gy, there is a growing number treating with 20 fractions each of approximately of 3gy which though not the same by total gy give very similar results and near enough side effects. Fom the patients perspective this saves more visits and the RT is completed earlier, so worth asking.

Having studied the 'Tool Kit' and replies here and from your consultants, it really is down to you to weigh everything up and make your personal treatment decision.

Barry
User
Posted 18 Feb 2020 at 16:33

I am posting this here as I have tried 3 times to post it this morning and this afternoon as a new subject but keep getting the dreaded "Access Denied" and have reported it. This Charity should get somebody who is competent to sort out this and other bugs that have been ongoing for far too long. It's not fair to those posing questions and for those trying to answer them or appraise members of developments. So I hope the mods will transfer this to a new post as I tried to do. https://www.dailymail.co.uk/news/article-8010631/Prostate-therapy-HALVE-effects-promises-revolutionise-treatment.html

 

Edited by member 18 Feb 2020 at 16:38  | Reason: to highlight link

Barry
User
Posted 18 Feb 2020 at 17:41

I watched Professor Whocannotbenamedhere’s pre-op video in full, despite having been there, done that.

Very informative, and I would recommend it to anyone considering surgery.

I note the Prof. is off to an international symposium shortly, with the other two world-renowned Retzius-sparing surgeons, the Italian Whocannotbenamedhere and the Korean Whocannotbenamedhere.

If you, like me, are interested in the gory details of the surgery, the Prof. has provided a video of what Da Vinci gets up to during his assault on your sexual organs:

https://youtu.be/kX777A8El18

I watched all the way through, but sadly there was no “money shot” at the end, which of course will be the case for the rest of that patient’s life.

Enjoy!

Cheers, John.

Edited by member 18 Feb 2020 at 18:18  | Reason: Not specified

User
Posted 18 Feb 2020 at 20:42
I went down the RARP route plus neurosafe, with the thought process that I would then have some other options left should they be needed in the future.

I think the final decision very much comes down to your own personality and your ability to cope with the side effects of each treatment.

This site is invaluable.

User
Posted 20 Feb 2020 at 12:24

Hi LynEyre. Met with Onco yesterday. Upgraded to T3a. Tumour close to edge of prostate and they are assuming it could have leaked. No lymp node involvement. 

Treatment offered is 20 sessions of RT and 3 years HT (Prostap).

They used "predict prostate" that gives chance of 15 year survival. Forgot to ask if they use nomograph for chance of full remission. Do you know where I can find this?

Thanks again for your help.

User
Posted 20 Feb 2020 at 13:18

Predict Prostate is the NHS nomogram - % chance of a 15 year survival is okay because the NHS nomogram doesn't address remission data, only survival. Full remission would be 10 years without recurrence.

You can put your own numbers in here https://prostate.predict.nhs.uk/ 

and here https://www.mskcc.org/nomograms/prostate/pre_op 

 

I have put your numbers in as far as you have posted these - according to the nomograms you have a

- 80% chance of still being here in 15 years if you have RT / HT

- 71% chance of still being here if you opt for active surveillance

- 24% chance of still being disease free in 10 years if you have RP

Easy to see why they are recommending RT but if you are playing with the MSK nomograms, keep in mind that outcomes in the UK are slightly worse than in New York, and are worse in the North of England than in the Home Counties. 

Edited by member 20 Feb 2020 at 13:40  | Reason: to activate the hyperlink

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

User
Posted 20 Feb 2020 at 13:24
Hi Boy,

These are the nomogram prognostication tools they all use, from the medical college in the States. In fact I had my forecast on my iPad when I saw an oncologist, when he turned his screen to me I turned my screen to him to show a mirror image!

https://www.mskcc.org/nomograms/prostate

I have three friends who underwent prostatectomies at the same time as me by the best and most experienced surgeons money could buy, and I am the only one who has not suffered recurrence. Both my mates have been on subsequent RT and HT, known as adjuvant treatment.

I have been to one of the top prostate oncologists in Britain, and he said at T3a, “You won’t die of it”. I think the nomogram says I have a 98% chance of survival for 15 years.

So, best of luck. I hope you survive for ever😉😉😉😉

Cheers, John.

User
Posted 20 Feb 2020 at 13:34

Thanks John. Scary stats on your mates re-occurance. Makes me wonder if heading straight to RT/HT might be least worse option.

Hopefully a long time to live whatever route is chosen. 

User
Posted 20 Feb 2020 at 14:50
My two friends had the RT & HT (one is ongoing with HT, I believe) but they both now have undetectable PSA the same as me, and are doing fine. Our surgeries were all around eighteen months ago.

Two out of three is not ‘stats’, just my immediate my contacts.

You are entitled to second opinions from a surgeon, and from an oncologist, so go for that, and weigh up what they all say before you decide what to do.

Cheers, John.

User
Posted 20 Feb 2020 at 14:56

Thanks. Surgery not discounted yet. Will see surgeon next Thurs. Didn't mean to confuse. Will make a decision after meeting with Surgeon.

User
Posted 20 Feb 2020 at 16:40
Ah, I misunderstood your post - I read it that they had ruled out surgery and were recommending RT / HT.

If you are yet to see the surgeon, it will be important to clarify whether the op would be nerve sparing or non nerve sparing.

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

User
Posted 20 Feb 2020 at 16:51

Two very similar diagnosis, mine and a friends both with TA3. He had open surgery, needed blood transfusion and had some other probs. Because of rising PSA subsequently had HT/RT and 12+years on has non detectable PSA. He regrets having had surgery on assumption that the RT would have done the job.

My situation: Told by same surgeon who removed my friend's prostate that he doubted being able to remove all my cancer by surgery and recommended RT instead. At 2 years and minimal side effects seemed RT was a good decision but PSA started to rise persistently and with tumour subsequently found within prostate had HIFU and may have to have repeat HIFU or something else. I was told a Prostatectomy now would almost certainly lead to permanent incontinence.

Of course there is not assurance that had I gone the same route as my friend I would have had the same result but with the benefit of hindsight I would rather gone his route, at least I would not be facing further treatment to my Prostate now, and with likely more side effects.

Edited by member 20 Feb 2020 at 16:53  | Reason: Not specified

Barry
User
Posted 20 Feb 2020 at 21:54

Hi BB

sorry only just seen your question.

Mainly age and the impact of any RT at my age of 52. Plus potential negatives on bowel and bladder. My view while thought early stage(ish) and localised to look at surgical options. When I found out about the Prof and Retzius Sparing approach RP and neurosafe and the stats is made me more confident total removal was the best option for me. I figured I would probably lose my mojo and have a very good chance of regaining continence. As it happens I’m lucky as got both back same as pre-op (albeit dry climax). I’m now just over week 12 post op and starting back down the gym and getting back to relative normality in terms of jobs/tasks etc 

btw you can see anyone you choose via NHS Choices. 

Best of luck with your journey and it’s not an easy one and blew my mind quite a few times. Research and talking to folks that had been through various procedures was immensely useful in helping define which direction I’d take.

TG

User
Posted 01 Apr 2020 at 22:58

Hi all. Thought it was time to update.

Saw the Onco on Feb 19th. All was going well until I was told 3 years HT. That was a shock. I was told all T3 treated that way. I thought I was T2a until then! 

Met with surgeon Feb 27th. He was very confident of a good result. Also offered entry to NEUROSAFE trial. So I was all in. Being considered high priority and hopefully surgery in April.

Fast forward 3 weeks and Corona-virus rearing it's ugly head. No new entrants being taken on NEUROSAFE trial. More recently amount of surgeries being reduced. Now none being done!

I have been trying to discuss with anyone that will listen about the possibility of going on HT in the meantime. Got some positive feedback today that this could happen soon.

I'll get back to pulling my hair out!

Cheers,

Burghboy

 

User
Posted 02 Apr 2020 at 18:19
This is where we are now Burghboy...my husband has had no meetings since diagnosis and no contact from anyone at all. He wants to start HT to halt the progress but we can't get through to anyone and we feel stranded.

We are also pulling our hair out :(

User
Posted 02 Apr 2020 at 21:00

Hi Littlewren. 

For what it's worth. I have tried to engage specialist nurse, surgeons secretary, and nurse that gave surgery school.

It might also be helpful if you provide more detail on your OH, in terms of PSA, Gleeson, staging. So much experience on this community to advise if you provide details.

J

User
Posted 02 Apr 2020 at 21:51
Yes, we've tried secretary and also specialist nurse. Left messages but no one ever gets back to us.

I think our next step us to ring the GP and see if she can stir them up.

I will up date in the profile.

User
Posted 29 Apr 2020 at 13:51

An update.

Spoke with surgeon 3 weeks ago and he formally offered the option of  taking HT for time before surgery starts up again.

Also gave me the option to go back to Oncology to see if I could get RT going quicker. Spoke to them but was going to be two weeks before I could chat with consultant, so declined.

So I have opted to stay with the surgery team. Had my 14th bicalutamide (150 mg) today. So far, so good. No obvious side affects apart from maybe the odd tiredness. Will update on how things progress. 

J

User
Posted 06 May 2020 at 18:35

I was diagnosed the first day of the lockdown 

I thought surgery was the best option but with the lockdown the op was cancelled.

Now on 150mg hormone therapy and wondering whether to stick with surgery or go for radiotherapy when things restart.

I’d loose one nerve bundle with surgery but could save the other.  No waterworks problems that I’d need surgery to solve.

nearly 58 so wondering if RP would lead to problems later in life and wondering why some people recommend surgery if you’re ‘fit and young’

PWf 

 

Edited by member 06 May 2020 at 18:39  | Reason: Not specified

User
Posted 06 May 2020 at 19:23

Thanks PWf. Honestly I could have written your post.

This far in and I am still not sure. I have heard on this site of at least one person that had PCa come back in their prostate after RT. Don't know how unusual this is. Anyway, surgery takes away this possibility and that is where I am at. For good or bad!

Take care,

J

User
Posted 06 May 2020 at 20:12

I thought that when I saw your post. My dad had prostate cancer around 2002. He had an op to remove the cancer but not sure if it was radical. He was born in 1933 and both he and my mom are not in the best of health so my brother and me have decided it’s best not to stress them out by letting them know.

His cancer came back last year and I spent a few days taking him in to the hospital. It’s in his bones now but to be honest with the PC medication he’s getting it won’t be the PC that gets him. 

Having RT does seem to make surgery afterwards more difficult but RT does seem to have less side effects.  (Tried the predict prostate tool and that seems to say RT might be best.)

plus my sister in laws brother was diagnosed at our age. He went for surgery and2 years later he’s cancer free although it took several months to get over the after effects of the op

Edited by member 06 May 2020 at 20:16  | Reason: Not specified

User
Posted 06 May 2020 at 20:30

Hi PWf. Can I ask your information in terms of Gleeson and staging. Helps give perspective.

Also about the Predict app. I have not worked out how to differentiate between RP and RT. Is this obvious to you? For me it just looks like giving info between radical something and nothing. 

Thanks,

J

User
Posted 06 May 2020 at 20:51

my Psa was10.4

Gleason 3+4

and staging was said to be early T3a? I.e not sure from the MRI if it’s a bulge  and T2 or T3a

the predict app gives the same survival for either radical procedure so doesn’t distinguish between surgery or radiotherapy 

scrolling down the predict page shows erectile dysfunction, incontinence and bowel issues.

however I don’t know if these reflect RARP as the data is from a while ago and not sure if RARP was in use. Haven’t read enough yet.

have you checked your surgeon on https://www.nhs.uk/service-search/other-services/Hospital/LocationSearch/8/Consultants

User
Posted 07 May 2020 at 20:32

Thanks PWf. I am much the same. PSA 8.2. Gleeson 7 (4+3).

Staging not clear but given the same as you. i.e. maybe T3a.

Good luck with your decision.

J

User
Posted 07 May 2020 at 21:10
I had PSA of 9.5 and Gleason 3+4. Didn't get a staging, but it didn't matter as RARP was my only option - everyone agreed that RT with my Ulcerative Colitis (even though it's mild) would ruin my quality of life. At 68 I'm probably older than normal for RARP, but I don't have any other health issues, so the consultant wasn't worried. TBH given the option I would still have plumped for RARP, because my wife has had RT and had several side effects and I also prefer to know quickly if the procedure was a success.

Luckily got mine done just ahead of covid and have been told that PSA is undetectable and I had negative margins. However there was no nerve sparing on the left hand side. Continence-wise I've been dry all night from the beginning, and the consultant says I have good pelvic floor (not the slightest bit of stress incontinence), but I can have "urge" incontinence. Physio says that because my prostate was so big, I now need to re-train my bladder. I'm told it will probably take some months to sort out ED; we'll have to see.

In your position, providing that you are reasonably fit and healthy otherwise, I would have thought that the only real issue with RARP would be whether they can spare the nerves both sides. If so and at 57 you should have good outcomes, but of course nothing is guaranteed. You wouldn't normally expect bowel problems with RARP (unlike RT) unless you were very unlucky (i.e. your prostate was squashed up against your intestine, if I recall my chat accurately).

User
Posted 08 May 2020 at 11:28

Thanks Peter and J

I’m also aiming to spare a nerve bundle if I go for RARP . The other is to close to the bulge but hopeful for one to be saved. It would be a da Vinci machine at the lister. Slightly concerned that a couple of months HT courtesy of Covid delays will affect the success of the RARP but told it shouldn’t .

The early T3a with a question mark also makes me wonder if I’ll need RT anyway afterwards so looking into RT  at mount vernon. 

Lots to read on a bank holiday weekend!

so difficult to choose

Edited by member 10 May 2020 at 11:59  | Reason: Not specified

User
Posted 11 May 2020 at 13:30

Originally Posted by: Online Community Member

I watched Professor Whocannotbenamedhere’s pre-op video in full, despite having been there, done that.

Very informative, and I would recommend it to anyone considering surgery.

I note the Prof. is off to an international symposium shortly, with the other two world-renowned Retzius-sparing surgeons, the Italian Whocannotbenamedhere and the Korean Whocannotbenamedhere.

If you, like me, are interested in the gory details of the surgery, the Prof. has provided a video of what Da Vinci gets up to during his assault on your sexual organs:

https://youtu.be/kX777A8El18

I watched all the way through, but sadly there was no “money shot” at the end, which of course will be the case for the rest of that patient’s life.

Enjoy!

Cheers, John.

 

 

Glad I had finished my lunch before watching this!! Glad the Prof did mine though :-)

User
Posted 11 May 2020 at 22:48

So many wrongs in one post. Apart from my quarterly bloods I’m loving being a jaffa. I don’t have to watch the  good lady take her smarties anymore. I would have loved to have had kids but missed that being a lad over the years. But now thanks to the Prof and Da Vinci Xi our nocturnal life has never been better. 🤷🏼‍♂️👀🥴🤔

User
Posted 11 May 2020 at 22:51

Hugely disappointed my video footage failed. First words at 7am next day when the prof did his rounds were how to fill the upcoming family Sunday matinee 🤖🤠🤷🏼‍♂️🤪

User
Posted 10 Jun 2020 at 22:26

Hi all. Reading your posts with interest ....

In a nutshell, I'm 58 with PSA level of 7.2. Gleeson score of 6 (3+3) and T3a.

Consultant outlined options to be surgery or radiotherapy.  My case is being discussed again on Friday and consultant to phone again next week to confirm they still feel it to be T3a (it would seem that the 2 biopsies I've had aren't entirely conclusive).

I'm now struggling with which way to jump ... part of me thinks that surgery would give a better outcome, but it also seems so final ... and I'm worried about side effects. But radiotherapy doesn't seem much better ...

Appreciate this is all so personal, but any comments gratefully received!!

User
Posted 12 Jun 2020 at 16:35

Hi Andrew

Sorry for the delay in responding. 

Please feel free to check my profile and surgery journey thread.

I'm 52 and last September got diagnosed with Gleason 6(3+3) T1c with PSA 5.6.

Its one hell of a journey with massive decisions for sure. In my case I had 3T mpMRI which came back PiRADS 4 with suspect areas. A TPM showed multiple tumours in all 4 areas of the prostate although thought localised and early stage.

At the time it was quite a shock. Did the usual with asking my local surgeon about all the options from AS, Surgical, HIFU, NanoKnife, Radiotherapy, Brachytherapy, Proton Beam, Focal Laser etc etc. Most were off the table as I have multifocal disease. 

While waiting for the London MDT to review I made a point of going away....gettting blasted on beer/wine for a few days which worked well to clear my head. Then a sat down with my ex, who is an immunologist, and went through all the science and histopathology to understand what I dealing with and try an articulate some of the risks with a hope to choosing a pathway with best outcome. 

I found several papers which went through all the pathology of cancer and how it evolves over time. What I wanted to understand was even though my tumours were early stage is there any likelihood of migration plus probability of as yet undiscovered area's of higher grade cancer. 

I found several papers which mentioned in active surveillance studies it has been shown metastases had occurred. Also there was early evidence that low grade cancer, although very stable in situ, can give rise to spread. This research is still fairly recent so more data needs to be collected in terms of were the type 3 cells directly involved in the spread or were there clinically undetectable regions of higher grade involved. 

At this point it was looking like surgery was the only sensible option in my case. However, I was mindful of impact in terms of ED, being sterile and possible incontinence. 

The next step was a second opinion. I looks high and low for well known high volume (>100 prostatectomys per year)  surgeons with greats stats. Fortunately I reached out on this discussion forum and via my local support group. This proved invaluable and for me a game changer.

Via several folks on here and in my local area I found a great surgeon based up at London Bridge (via private) - Prof Whocannotbenamedonhere. I did the usual extensive checks outside the personal recommendation and his credentials ticked all the right boxes plus I learnt about a relatively new approach to prostatectomy - retzius sparing robotic assisted radical prostatectomy + NeuroSAFE. 

This appeared to mitigate most of my concerns around potential post-op continence although ED issues still seemed to be a factor which was mixed. NeuroSAFE made a lot of sense in terms of optimum margins as a pathologist analyses' your prostate resections in real time while you are on the surgical table thus increasing chances of proper safe margins. 

I met up with the Prof first week of November and from the moment I met him knew he was the surgeon I wanted operating in such a high risk area. He agreed with my concerns that even though I had low grade gleason 6 cancer early studies showed its not as safe as one might hope. Plus in my case as all four quadrants were involved its likely ~60% that post surgery my histology would be upgraded.

I booked surgery for end of November. Went in the night before and stayed at a hotel next door then it was 7am check-in for surgery. Everything was very smooth end to end. During surgery it was found that the tumours were more extensive than had been shown via biopsy/MRI so following a couple of cautionary flags from NeuroSAFE one nerve bundle was partially taken and a bit more tissue at the base. So in effect my surgery was 3/4 retzius sparing and 1/4 alt retzius. Given it was slightly more complex made me even more thankful I had found one of the top UK/EU surgeons and he was confident of a good outcome. 

Post surgery I had no pain and was also lucky to not need a stomach drain as there was no significant bleeding to manage. The prof mentioned my timing for having surgery couldnt have been better as the cancer was very close to breaking through the capsule and had I waited a few more months might have been a totally different story.

Couple of days later I was released and then I had the wait for post surgery histology results. As it turned out these were very good and showed all margins clear. Final grading was G7(3+4) T2c. So the profs hunch there would be medium grade tumour was correct and hopefully removed before any micro metastasis had occured....time will tell.

I made a good recovery. Urinary catheter was out after 14 days and i had pretty good continence from the outset. A few leaks and drips until week 5 where the surgical stitches start to soften and allow the sphincter to close more completely. Up to week 12 I had a few stress leaks. A couple of partial wettings at night after a shin full of beer. But other than that totally dry and not used pads since week 7 albeit for PSA testing when I am so nervous I dont trust my bladder until its over :-)

To my delight very early on post op I started to see signs the old chap wasn't flaccid after all and there were signs of life. 4 weeks after surgery I was able to have penetrative sex and to date have good performance. I would say tiredness affects its more than pre-op. But if I'm awake and refreshed its as good as before. Add 2.5mg tadalafil to the mix and the performance of my twenties returns.

Only glitches I've had are pelvic floor discomfort which will settle over time. Please a couple of bladder voiding issue which were concerning at the time but I isolated the triggers...coffee/hot curry. Since then its settled.

PSAs since have been undetectable so thus far my outcome has exceeded my expectations.

Obviously with any surgery the outcomes vary on a case by case basis. For me Retzius Sparing RARP + NeuroSAFE worked very well plus the choice is surgeon was a game changer. Longer term who knows but for now its positive and a totally different place to where I was pre-surgery.

Shout or PM if you need more but I hope this helps give some reassurance and detail which can be fed into the mix with your decision process.

Simon

 

User
Posted 12 Jun 2020 at 16:56

Originally Posted by: Online Community Member

In a nutshell, I'm 58 with PSA level of 7.2. Gleeson score of 6 (3+3) and T3a.

Consultant outlined options to be surgery or radiotherapy.  My case is being discussed again on Friday and consultant to phone again next week to confirm they still feel it to be T3a (it would seem that the 2 biopsies I've had aren't entirely conclusive).

I'm now struggling with which way to jump ... part of me thinks that surgery would give a better outcome, but it also seems so final ... and I'm worried about side effects. But radiotherapy doesn't seem much better ...

It is usually the scans that determine whether a man is T2 or T3a - but if they are looking at your biopsies again, it may be that some of the cores were showing cancer right at the top of the sample. If it is indeed a T3a, I think your doctors will explain that although RP and RT seem quite final, you actually need a (hopefully) quite final intervention. Sometimes, a man with G6 will be encouraged to look at active surveillance or less radical treatments but T3 is not to be messed with. 

As I just posted elsewhere, the hierarchy of decision making could be described as 

- with the advice of the MDT, choose the treatment that gives you the best chance of full remission

- decide whether you can live with the known and potential side effects - if yes, happy days

- if no, work out which side effects are least acceptable to you and then opt for the treatment that minimises these risks while still giving a reasonable chance of remission

Some side effects are guaranteed for any treatment - dry orgasms (sooner or later) and being infertile, for example - while others are more likely with some treatments than others. But keep in mind that one potential side effect of treatment is to get rid of the cancer. The PCUK toolkit includes a pros/cons sheet to help you prioritise the different side effects or treatment. 

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

User
Posted 12 Jun 2020 at 17:01

Hi Andrew. Apologies for delayed response.

I have found the decision very difficult. In the end I have opted for surgery. If the cancer is contained, then hopefully  the surgery will be the end to it. If not, then there is the option of RT and HT. 

I was told that if I went down the RT route then it would be with 3 years HT, and didn't fancy that as my first option.

All the best with your decision.

J

User
Posted 14 Jun 2020 at 11:50

Time for an update (14/6/2020). I will also add to my profile.

I've been on 150mg/day of Bicalutamide for just over 8 weeks. My observations of side affects:

1/ Very tired some days. Usually solved with a nap.

2/ Feeling sick on the odd days. Car sick feeling too. 

3/ Libido much reduced. Also much more difficult to get and maintain erections. Orgasm's weaker.

4/ Weight increasing gradually and particularly around chest. Nipples sensitive.

All in all not too bad, but I wouldn't like to be long term on HT. On a positive note, I have a surgery date of 25th June.

J

User
Posted 14 Jun 2020 at 14:57

Hope all goes well on 25th June. You will be glad to get that over and done with.

Ido4

User
Posted 15 Jun 2020 at 16:02

Thanks Ido4. Got to say I am dreading the surgery.

J

User
Posted 15 Jun 2020 at 16:50

I had the surgery March 2019...all told despite some discomfort and a few changes I have recovered very well! I would try not to worry too much if you can...they will look after you and then you can start getting back to as near normal as possible!

 
Forum Jump  
123>
©2021 Prostate Cancer UK