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My first psa reading of 30

User
Posted 10 Aug 2024 at 17:36

Hi Marvel,

There are some in here that believe the best course of action is to get rid of the mothership. I’m a bit puzzled but your update though…are you saying if you went down the HT/RT route and your PSA started to rise that they would then operate? I always thought that it was very difficult to operate after RT as it turns you prostate imto a gooey mess? That’s what worries me…when MY testosterone comes back(if ever) and PSA rises showing that the treatment has not fully worked, the only option for me is HT for life😩😩😩😩 if you go for RARP you at least have a Plan B of SRT….as many in here have had.

Good luck with your decision, which might even be taken out of your hands(as it was for me) by the MDT.

Derek

User
Posted 11 Aug 2024 at 22:55

Thanks, I'm now a bit confused,  I will double check, I have another  meeting on Thursday, so  will ask.

he definitely recommended ht and rt, and nor removing the prostrate. The CT Mri and bone  scan came back negative , I need to do some research.  Thanks for the heads up

He also mentioned  that as I have previously had a heart attack  and have 3 stents, they have to consider the risk of me be sedated for a few hours.

Just confused but I will discuss  further  on Thursday. 

Cheers 

Edited by member 11 Aug 2024 at 23:38  | Reason: Not specified

User
Posted 12 Aug 2024 at 08:29

Hello mate.

Your heart condition is probably why they've ruled out the op. I had badly blocked arteries and there was a prolonged debate as to whether my heart would stand up to the stress of surgery. I believe during  robotic surgery your feet are higher than your head which puts even more pressure on your heart.

Eventually my cardiologist persuaded them that I was suitable for surgery. Everything went well but, just as if to prove the concerns of the anaesthetist were justified, I had a minor heart attack two months later.😁

User
Posted 12 Aug 2024 at 22:29
I hope your okay now.

I seem to be going from one extreme to the other on my journey. Saw the NHS Dr who did 2ww but as I have private medical Insurance I also saw a private consultant, NHS did my CT and bone scan private did my MRI and biopsy. I only used my Insurance as I thought it would be quicker, had my meeting with private consultant, gleason score 3 and 4, recommend rt and ht seeing another Dr this Thursday to discuss treatment plan after mdt meeting. Informed by my private medical, I'm insured for prostrate removal but not radio or Ht, so back to NHS so I have not idea what happens now...and time scales...

User
Posted 13 Aug 2024 at 08:25

I'm fine thanks mate. They drilled out some of the calcification and stented me up. It was a tough two weeks in hospital though, being in for heart treatment so soon after a prostatectomy.

Have you got a cancer staging? If they think it's contained it will be T2, if not T3. IF you had the choice of surgery of R/T and H/T which would you prefer?

User
Posted 13 Aug 2024 at 22:59
I think rt and ht , just because it virtually eliminates incontinence, ir might take longer but I think it's better. Having said that it depends what I'm told Thursday. Just annoyed my private medical doesn't cover therapy. Back to NHS wait game, which is playing with my head. But from what I know I think I should be seen within 31 days
User
Posted 15 Aug 2024 at 22:46
Thursday, tonight I saw another prostrate consultant , who was great. However, he went over my case in detail . He's saying I can have either an operation or therapy. Which has confused me I had got my head around therapy, as my last meeting suggested, but know I'm not sure. If I have it out then is there a greater risk of ED and incontinence , or if I opt for rt and ht does it lesson the risk.

Also not sure if I have an operation how long I will be off work and be fitted with a bag. I have to say I am impressed with the service, but all my consultations have been private funded. That said the consultant tonight works both NHS and private and the surgeon who would operate is the same, he's arranged for me to speak with him next week.

Just confused now, I wish it was taken out of my hands.

Any thoughts or advice greatly appreciated, you all have been brilliant πŸ‘

User
Posted 20 Aug 2024 at 11:43

I have not seen anyone post about the fact that having the prostate removed causing a reduction of one to two inches of the penis. This is because the two cut ends of the urethra have to be reconnected. I think more men would decide on radiation treatment or brachytherapy etc. if they were told about this. The potential incontinence and impotence are of course other significant concerns.

Mt doctor did not tell me about the shortening of the penis or about the blood in the semen. I find this all reprehensible. I have not decided what treatment to have yet.

 

Edited by member 20 Aug 2024 at 11:44  | Reason: Not specified

User
Posted 20 Aug 2024 at 15:21

I'm the same, over the last four weeks things have progressed  quickly  I think, I've had every test and seen 3 different  consultants, all beit private  just waiting on the mtd decision,  the meeting  is today...not sure if I can make the decision , I know it sounds  daft but part of me says whip it out, at least the main culprit has gone mine is T3a so it not spread or at least they can't  see it. But there is always the option then of having to give rt. So part of me thinks just have rt and ht, it's longer but I don't think  there are so many  issues .

I just don't know

User
Posted 20 Aug 2024 at 15:37

Originally Posted by: Online Community Member
I have not seen anyone post about the fact that having the prostate removed causing a reduction of one to two inches of the penis. This is because the two cut ends of the urethra have to be reconnected.

Bloomin' eck! If I'd lost two inches, I'd have ended up with a vagina.

Joking apart,  this research suggest initially you may lose a cm but gradually you get back to normal.

https://pubmed.ncbi.nlm.nih.gov/23102441/

 

 

Edited by member 20 Aug 2024 at 15:58  | Reason: Not specified

User
Posted 20 Aug 2024 at 21:09

I wasn't told about the potential penis shrinkage either and only found out after the event. Yes, it does look a bit smaller in the erect state these days but it has always been more important to me is that it still works. With a bit of help from Tadalafil and a cock ring it is just about good enough for penetrative sex. My wife reckons it is a better fit so I suppose I shouldn't complain.

User
Posted 25 Aug 2024 at 18:27

Time seems  to stand still no results  yet from my mdt meeting,  just wanting to start treatment, noticed slight  pain in my groin not sure if it's because  I've not been doing much , it's only been  3 weeks  since the biopsy so hopefully  it's nothing  too serious.  Not sure if it's just a side effect? 

Still hopefully next week u should get and update. Fingers crossed. 

User
Posted 25 Aug 2024 at 20:38

Thanks Adrian56,

Very interesting PubMed research.  I notice that they excluded men who had used penile rehabilitation techniques from the study and they observed better outcomes for men who had not lost erectile functioning after surgery.  I wouldn't have been eligible to participate in the research on both counts. :-(.

I'm 2 years post-surgery, and I'd say that I've lost 1-2cm. in length.  However, the study gives me some hope that I may still see progress for up to 4 years after surgery.  I'm still using the vacuum pump daily, so that may help things along.

Best wishes to all who are struggling with loss of length and E.D.

JedSee.

User
Posted 26 Aug 2024 at 09:19
Yes, the important thing is that any loss of length is CM and not inches :)

However once you are on HT you don't give a dam about what state it's in! :) Losing libido is the major side effect.

Hopefully I am coming off it this week so I'll have to see how long it takes before anything stirs down there.

User
Posted 26 Aug 2024 at 10:25

Originally Posted by: Online Community Member
Very interesting PubMed research.  I notice that they excluded men who had used penile rehabilitation techniques from the study and they observed better outcomes for men who had not lost erectile functioning after surgery.  I wouldn't have been eligible to participate in the research on both counts.

Hello mate.

What I found interesting about the research is how they measured the penis using stretch length. I suppose most blokes have used flaccid length or erect length as standard measurements. I'd never heard of a stretch length penis measurement before. 

I told my wife and she said "I'm glad that they dont use stretched boob lengths for ladies!" I cheekily agreed. 😁

I find it incredulous that so little research has been done on whether or not prostatetectomies affect penis dimensions.

Likewise there is very little scientific evidence on the efficacy of pumps for penile rehabilitation. According to the research I cited the difference would be minimal and that seems to be the general consensus of scientific opinion regarding the benefit of pumps.

The only penis exercise I've done over the past year or so is 5 Invicorp injections a month. I think I may have lost a a bit of length but my girth seems to have improved. Generally I'd say my erections are about 80% as good as they were pre op. 

I was terrified by tales of atrophy if you didn't use pumps. I dreaded the thought of my todger shrivelling up and dropping off like a lamb's umbilical cord. Fortunately, as yet, these fears have not materialised.

 

Edited by member 26 Aug 2024 at 10:56  | Reason: Typo

User
Posted 28 Aug 2024 at 21:31

Tomorrow is another  big day see my consultant  surgeon about removal not sure if it's the right  decision. My mtd meeting  said either rt and ht or op which didn't help. The surgeon is thinking  of robot assisted surgery? Not sure which rt I would get.

I'm just very  confused. I'm classed as t3a gleason 3+4

It the side  effects of surgery and what damage might be caused?

User
Posted 29 Aug 2024 at 07:55

If you’ve been given a choice then I think you’re lucky, although it’s not an easy choice to make…for some people anyway. I would wait until you’ve seen both the surgeon and Oncologist before making your decision. Be aware that going down the HT/RT route is no walk in the park for some people.  I had my last injection 6 months ago, my treatment is finished and hopefully successful, but ATM every joint in my body from my neck to my Achilles aches form the side effects of Prostap. You might be one of the  lucky ones and not get severe side effects but the point I am making is that both treatments have side effects, some get them worse than others. One thing to bear in mind though  that with staging of T3a I think there is a higher chance of requiring SRT somewhere down the line.

I’m sorry if I’ve muddied the water here but good luck with your decision.

Derek

Edited by member 29 Aug 2024 at 07:58  | Reason: Not specified

User
Posted 29 Aug 2024 at 10:29

The problem is, you can never guarantee, with either surgery or RT/HT or surgery, what side effects you'll get. I did lots of research of both treatments and picked RARP because it only involved, if all went well,  just one overnight hospital stay. The thought of having 35 hospital visits in 7 weeks for RT,  I felt was too long a process for me, plus I'd have been risking the additional side effects of HT.

My younger brother had PCa 3 years earlier than me, he selected RT and HT and appears happy with his choice. I'm happy with selecting RARP.

The only thing I wish I'd given more consideration to was the chances of recurrence. I never thought it was mentioned enough during consultations. I think many blokes reckon that when they select surgery and have 'the bugger cut out' they think that's it sorted, but it often isn't. The risk of recurrence then comes into play. However the recurrence risk also applies to those on RT.

When you compare the outcomes and side effects of thousands of patients and side effects, there is very little difference between the two radical treatments. However, how each treatment affects individuals can vary enormously.

I joined this site after my surgery. In a way I'm glad I did, because excellent though it is, in my opinion, it definitely focuses and is very biased towards poor outcomes. The vast majority of posters here, have had problems, no matter what treatment they've had. This unbalanced picture can cause unnecessary concern. I suspect the vast majority of PCa patients treatments go well but we rarely hear from them.

The forum is superb for giving support and a lot of peer reviewed research can be found on here. However I think care should be taken when using personal experiences on here to make treatment decisions.

Edited by member 29 Aug 2024 at 15:04  | Reason: Typo

User
Posted 29 Aug 2024 at 15:57

Thanks everyone it's helped alot, I spoke to a nurse for an hour  today  from cancer  support, she was brilliant explaining the difference between  the two ways of dealing with it. She said either would produce, the same outcome,  which seems positive,  inshort having it out is quick, but not without side effects and loss of nerves etc, it doesn't  guarantee I would  not need rt and ht later as it might gave spread but not visible yet...

RT and HT long route equally as effective,  less side effects but At least  the whole body gets a dose  so should kill off the cancer..

I will listen to the surgeon  tonight but my gut is saying  HT & RT

But thanks for you email they have assured and assisted me

User
Posted 29 Aug 2024 at 23:19

Thursday  29th August 

Saw the consultant surgeon tonight  re robotic surgery. Lovely  chap,  as I'm 19 stone and have a bmi of 40, I would  be the largest  person to work on, he had concerns   that when the bed is rotated then my body mass would move ( fat belly) he might have to stop the op and close me up, then another surgeon would perform  the larger incision and have a go. He also thought that I would be at a grater  risk of incontinence. 

So I think it's the long haul of RT&HT for me

..

 
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