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Radiotherapy vs Radical Radical Prostatectomy

User
Posted 24 May 2024 at 12:30

Originally Posted by: Online Community Member
Just  very scary how it has gone from a biopsy of 3+3 with PSA of 5.5 to 4+3 in just 5 months i.e. don't just assume because its 3+3 it will stay like that for a while. I am just thankful based on just an increasing  PSA of 5.8 my urologist insisted I got another biopsy just to be on the safe side.

Morning skeir.

Biopsies are not infallible. It is rare for your Gleason score to progress. As plexx09 stated earlier it is far more likely that your first biopsy missed the more aggressive cells.

I speak from experience. My first biopsy showed Gleason 6 (3+3), only 2 from 14 cores, only 10% cancerous, T2a. Based on Iow grade, low volume, and well contained cancer, I selected AS. 

18 months later, a follow MRI and biopsy,  revealed Gleason 8 (4+4), 20 out of 24 cores, all at least 40% cancerous, capsule breached T3a.

I had a prostatectomy and the pathology of the prostate was upgraded it to Gleason 9 (4+5)

I've been informed that the Gleason score was very unlikely to have progressed in this time, and that it was more a case of the first biopsy missing the the most cancerous cells. It appears the bloke who did that first biopsy must have been a lousy darts player. 🙂

User
Posted 24 May 2024 at 12:53

Yes should have got Luke Littler doing the biopsy  :)

User
Posted 24 May 2024 at 13:52

Originally Posted by: Online Community Member

Yes should have got Luke Littler doing the biopsy  :)

Or a urologist,  Amy Goode. Who was as accurate as her name. 😂 

Edited by member 24 May 2024 at 15:56  | Reason: Additional text

User
Posted 24 May 2024 at 22:53
Skeir, you have a dilemma most of us have faced. And you have summarised the issues well.

As Adrian says, a biopsy is only a sample and the difference a year later means the difference is more likely in the sampling than in cancer progression. And if you choose to have surgery, pathology will be done on the whole prostate which may change the grading again.

On paper both approaches have roughly similar success rates, and both have side effects. Although if you receive radiotherapy on the latest machines the risk to nearby organs should be less than it used to be. The decision is personal.

As you recognise age matters, which is why surgery tends to be favoured among younger patients and radio among older. The younger you are the better you recover from what is pretty serious surgery, and you are more likely to live long enough to experience a secondary cancer (though as said above, those risks should be reducing). And following surgery you have radio still available should cancer return while the reverse is rarely the case. On the other hand the worst side effects of surgery, incontinence and erectile dysfunction - which not everyone gets to a debilitating extent - are going to be worse with a lot of your life before you.

It is tough for all of us making the decision. There are men here who have chosen both with good success, and others who are suffering from ongoing side effects or recurrence whichever they chose (to be fair, successes are under-represented, those happy folk stop following the forum and posting).

User
Posted 25 May 2024 at 00:10

Thanks all for the posts this week. It’s been very supportive and really appreciate you sharing your own experiences.  For me it’s still not quite sunk in yet given I only found out a week ago but at least I can start to see a path forward albeit a challenging one.

User
Posted 25 May 2024 at 11:39

Originally Posted by: Online Community Member

As an aside here is one benefit of RP that my wife pointed out the other day - sex is less messy... 😁

nailed it! No cleaning up needed these days and the orgasms tend to be longer and more intense….her loveliness is a bit envious 🤪🫢🤣

User
Posted 25 May 2024 at 12:03

Originally Posted by: Online Community Member
  For me it’s still not quite sunk in yet given I only found out a week ago but at least I can start to see a path forward albeit a challenging one

It's very early days mate but you'll cope. Please keep us updated. It makes it easier for you and us if you continue to use this conversation. It saves a lot of repetition.

Good luck pal.

User
Posted 25 May 2024 at 14:28

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

As an aside here is one benefit of RP that my wife pointed out the other day - sex is less messy... 😁

nailed it! No cleaning up needed these days and the orgasms tend to be longer and more intense….her loveliness is a bit envious 🤪🫢🤣



Actually I think it can be MUCH more messy for those who spurt urine at orgasim (i.e., at that point they are FAR from dry).  I believe such individuals are not entirely small in number post RP - at least according to many of the reports on these boards.  This may well be because the sphincter is relaxed if NOT COMPLETELY ERRECT.  From what I read it is suggested that you relieve yourself prior to engaging in sex and use the appropriate tools to get a full and complete erection to guard against this - if indeed you find that is required - which I understand for many it is.  

 

User
Posted 25 May 2024 at 14:34

Adrians advice is spot on skier, it comes as a real shock to all of us to be faced with our mortality. However now that your treatment plan is in place you should be in a better place and come to terms with the disease. Focus on getting yourself in the best possible physical and mental shape before your Op, do your pelvic exercises, and finally be good to yourself, do lots of nice things and give yourself treats to keep your mind from wandering.

I wish you good luck with the Op and that your recovery will be good and steady.

Derek

User
Posted 25 May 2024 at 16:19

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

As an aside here is one benefit of RP that my wife pointed out the other day - sex is less messy... 😁

nailed it! No cleaning up needed these days and the orgasms tend to be longer and more intense….her loveliness is a bit envious 🤪🫢🤣



Actually I think it can be MUCH more messy for those who spurt urine at orgasim (i.e., at that point they are FAR from dry).  I believe such individuals are not entirely small in number post RP - at least according to many of the reports on these boards.  This may well be because the sphincter is relaxed if NOT COMPLETELY ERRECT.  From what I read it is suggested that you relieve yourself prior to engaging in sex and use the appropriate tools to get a full and complete erection to guard against this - if indeed you find that is required - which I understand for many it is.  

 

had exactly this. I empty my bladder beforehand and problem self mitigates.

User
Posted 25 May 2024 at 16:25

Originally Posted by: Online Community Member

Thanks all for the posts this week. It’s been very supportive and really appreciate you sharing your own experiences.  For me it’s still not quite sunk in yet given I only found out a week ago but at least I can start to see a path forward albeit a challenging one.

easier said than done but try and focus on beyond the surgery. My chocolate starfish was twitching like a rabbits nose beforehand. Like exams nerves amplified to infinity. When I woke up from surgery relaxed and relieved it was over and pondered the fact that I need not have worried at all. Next stressed bit was waiting for the surgeons report which was in my inbox (cc gp) 2.5hrs post op and then 7 days until histology buzzed my inbox delivering favourable results.

its a hell of a roller coaster ride but i found surgery not really much more uncomfortable than when I had my tonsils out. 

hope everything goes well and ride out the occasional wobbles as the surgery is over in a blink 😀🙏

Edited by member 25 May 2024 at 17:08  | Reason: Not specified

User
Posted 20 Jul 2024 at 11:13

Hi there. I thought I'd post an update following my RALP surgery that might help men just about to go through this journey. As a reminder, I am 52, had a 4+3 Gleason with a 1cm tumor on one side of the prostate and PSA of 5. My surgery was just over three weeks ago now. Nerves were removed on one side but spared on the other.

The robotic surgery went fine (fantastic job by Ed Rowe and the team at Southmead Bristol).

On waking up after 4 hours of surgery there are those mixed emotions of being ecstatic the surgery is over and hopefully, the tumor that I have been living with for what seems like an eternity has finally left the building, while at the same time seeing a catheter and lots of wounds and realizing the recovery is only just beginning.

I spent one night in the hospital and home the next day. Because you are operated on for 4 hours laying 45 degrees downwards,  my shoulders ached badly for about 4 days afterward but fine after that.

I quickly got used to living with a Catheter and found using a coat hanger sandwiched between the mattress and bed frame with the lower velcro strap attached worked a treat to hold it while sleeping. I was up on my feet for small stints during the day, and made a little walk to park after just a week. Only forget to close the catheter tap once typically on the last day after emptying it!

The catheter came out after 2 weeks and was nothing to worry about, a 2-second weird discomfort then all over. I had heard some horror stories on this site about men needing 20 pads a day initially so bought loads of pads and nappies but I am pleased to report I just used one pad on the 1-hour car journey home. No leaks while sitting or sleeping from day 1 of removal. 

Just under 3 weeks after surgery I made my daughter's graduation, a 1 hour drive, on my feet for a lot of the day but just needed one pad. I assume my leaks are caused by pulls on the wound between the urethra and bladder which is still healing as they come occasionally while walking, coughing, or bending and are a little bloody. 

No sexual sensations down below yet, on drugs to stimulate the nerves but the consultant says it can take up to 2 years and may never come back so just need to be patient on that one. 

The biopsy of tumor came back as 4+3 i.e. same as before and although it had broken out on one side because nerves were also removed the consultant thinks  it has safe margin and lymph node was clear. So now just need to wait on PSA results in 3 weeks time.

So there we are, I know the journey for each of us is different but hopefully this is a positive story that we all need when going through this.

 

 

 

 

User
Posted 20 Jul 2024 at 11:52

Cheers and thanks for the update. Good luck with your histology results and first post op PSA. I hope that you continue to have a speedy and full recovery.

You're sixteen years younger than me. Loss of erections were a major setback for me. I attended an ED clinic 6 months post op and was prescribed Invicorp injections, they worked for me. Giving a good enough erection for penetrative sex. Later, if you don't get erections, it might be worth giving it a try. 

 

 

User
Posted 22 Jul 2024 at 14:07

Hi Skeir,

Thanks for sharing your journey - I have just read the whole thread as I have got a similar decision to make, and reading your posts was very helpful.

I have just returned from the surgeon, who was checking my MRI results. I am 42, so a bit younger than you, and diagnosed with a Gleason score of 3+3. My PSA level was actually low/normal, and they only discovered the tumour while dealing with something minor and unrelated. I believe there was only one core that came back positive in the biopsy.

Anyway, now the surgeon has told me I must make that decision between radiotherapy and surgery with a robot (he believes surgery is best, but admits that is because he's a surgeon). I will speak to a radiologist, but I'm leaning towards surgery because of the fear of the cancer returning. I'm very scared of the operation and the side effects, but somehow having a choice between two treatments has given me a better feeling of control over the situation, if that makes sense.

All the best for you and I hope the recovery continues to be positive.

C

User
Posted 22 Jul 2024 at 14:57

Skiers post sums it up pretty well on decision process for us 'younger' men.

At 52 I was actually nudged towards the treatment the clinicians thought was the best option, so for me it was easy to decide.

Edited by member 22 Jul 2024 at 14:59  | Reason: Not specified

User
Posted 22 Jul 2024 at 21:28

CC Brun,

Have you not been offered the possibility of ' Active Surveillance, with a Gleason score of 3+3?

JedSee.

User
Posted 22 Jul 2024 at 22:24

Hi JedSee,

No I haven't - apparently I'm considered too young for it.

C

User
Posted 22 Jul 2024 at 23:47

Originally Posted by: Online Community Member

CC Brun,

Have you not been offered the possibility of ' Active Surveillance, with a Gleason score of 3+3?

JedSee.

I asked CC Brun the same question, a couple of months ago, on his conversation https://community.prostatecanceruk.org/default.aspx?g=posts&m=297211#post297211

I'm mystified why he has been advised that he is too young for active surveillance.

Edited by member 22 Jul 2024 at 23:58  | Reason: Link

User
Posted 23 Jul 2024 at 05:44

Hi Adrian,

I'm not sure either - but if I could find someone to strongly advise AS, I would probably go with that! But I'm yet to find anyone who doesn't believe RP is the best option. 

(Apologies for hijacking someone else's thread here :-) I'll update mine if I hear anything else or need more advice soon)

C

User
Posted 23 Jul 2024 at 18:16

Originally Posted by: Online Community Member

Hi Skeir,

Thanks for sharing your journey - I have just read the whole thread as I have got a similar decision to make, and reading your posts was very helpful.

I have just returned from the surgeon, who was checking my MRI results. I am 42, so a bit younger than you, and diagnosed with a Gleason score of 3+3. My PSA level was actually low/normal, and they only discovered the tumour while dealing with something minor and unrelated. I believe there was only one core that came back positive in the biopsy.

Anyway, now the surgeon has told me I must make that decision between radiotherapy and surgery with a robot (he believes surgery is best, but admits that is because he's a surgeon). I will speak to a radiologist, but I'm leaning towards surgery because of the fear of the cancer returning. I'm very scared of the operation and the side effects, but somehow having a choice between two treatments has given me a better feeling of control over the situation, if that makes sense.

All the best for you and I hope the recovery continues to be positive.

C

hi CC

My initial diagnosis was 3+3 but as it fairly common place the biopsy/scans don’t always tell the full story. Very much the case with mine as had I waited any longer it would have gone T3 and breached the prostatic capsule plus higher chance of mets etc. AS is all very well and something I was offered. Pleased I decided to opt for surgery ASAP… fundamentally the longer the cancer is in there (even type 3 cells) the higher chance of spread plus be mindful that in ~44% cases the cancer staging is upgraded with post op histology.

 
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