Can't understand why anyone would choose surgery over Brachytherapy? I must be missing something?

User

Posted 24 Jan 2021 at 02:00

Hi Barry

Thanks for your kind Comment

Yes sadly I was forced to have a surgery operation..and it took from beginning to end only 6 months maybe less.

NO ! A big NO !

hands on they did not give any leaflets about risks of The surgery.

Only the risks I was told about ED.thats all.

They did not mention about risks of Catheter users catching infections.

They did not mention about adhesions

They did not mention about long term effects of not to lift up heavy items.

They did not mention about any kind of internal pains.

There are so much to talk about but I'm right now in so much anger this time of the night.

I was framed up that's all I can say

My ex girlfriend to be undercover she played a big role in it!

User

Posted 24 Jan 2021 at 12:53

Wow. Rikki! There are so many things you didn't know. Why didn't you do tons of research beforehand, which would have created a lot of questions for you to ask, including the above, and get answers? There is a wealth of information out there, including useful sites like this one.

I can't imagine why anybody would want to "frame you up". And did somebody really "force you" to have surgery? Did they frogmarch you? (:

Your post suggests a lot of anger which may have been spared if you had done your homework before being "forced". However, I sincerely hope you are coming to terms with your situation and seeking counselling if you are suffering anger symptoms.

User

Posted 24 Jan 2021 at 13:18

Thanks for your kind comments

Let me explain and add more about my case please.

I have inconsiderate neighbours nextdoors and below my apartment flat. I could hear noises where I shouldn't hear ,my nextdoor neighbour he plays music 7 days a week from 8 am until 8pm sometimes later than that.

I Walker into a police station 4 years ago I asked them to help me stop me being a criminal person.

I waited for my nextdoor man to come put days after day but he did not so I could talk to him civil ways or none civil ways.

He just says he has rights to play music's even on Christmas days,new years eve new years days

I'm a social house tenant I'm unemployed I have got physical disabilities had surgery operation for my leg .

Have contacted with Housing associations but received no help.i even attended their open days to raise my issues guess what they offered me a flat but where? Steveange!! Miles away from London

All my life I lived in London dont know anyone from stevenage why should I relocate there?

Anyway Before I attended to that meeting at housing associations I had maybe 10 times meetings regarding the noises with Housing area manager.I invited him to my place he came around and he heard still nothing had been done.

I contacted with a local MP still nothing done.

A friend of mine who works for CAB citizen advise bureau he wrote them letters,Emails but no actions taken.

I'm not a psychopath with anger butcher people for nothing, so I taken calming tablets such as Amitriptyline and aroprazol with their help I sleep longer and keeps me calm...so why I'm telling you about all these.

You mentioned that why I did not do my research?

Well my mind was everywhere I cannot think healthy ways.even now days I got to watch my phones calendar to know what days I'm having .

Those medicines made me not to think healthy way. And stupidly I took the decision and go ahead with that Surgery operation.

Ohhh by the way the nurse at the hospital whom told me that I have a cancer she also said IM your nurse from now on if you wish to contact with me here is my numbers blah blah blah blah yes I contacted with her but couldn't reach her at all left messages many times than had recieved nothing heard nothing.

My ex girlfriend to be B.....h is a civil servant so she destroyed my life .she was even on nextdoors side as well she was kinda defending them

Also she was keep saying ohhh you got to go ahead with surgery for me.for us blah blah.

Anyway ...she is history now

Hope you can understand my feelings mate.

But when this (NHS) people arranges pre operation MEETINGs

I want to go and infrom about the untold stories to those people whom will be attending the meetings.

I dont want them to be disappointed like me.

User

Posted 24 Jan 2021 at 15:27

Hi all, we seem to be getting off topic can we keep phil's thread to comparing surgery to brachy. Rikki's comments about side effects of surgery are very relevant to this, but issues about consent probably belong on another thread.

Dave

User

Posted 24 Jan 2021 at 21:34

When I was first diagnosed Jan 2018 (age 62) it was with a "low risk" Gleason 6, and I was put on AS. When they found a new "high risk" Gleason 8 tumour in Oct 2019 (age 64) and clinical intervention became necessary my first thought was go for surgery. I think it's a pretty classic response, get rid of prostate get rid of PCa! Then the MDT advised me against it. They wanted to remove lymph nodes too and they thought, given my physical state and lifestyle, that the potentially five hour op under GA would carry too high a morbidity risk.

So I settled for EBRT, which finished last August. Had some pretty unpleasant side effects since, some of which have cleared up now but some such as,nocturia (average four times a night which leaves me wasted the next day), radiation cystitis and piles, are still giving me a lot of pain and grief.

Part of me still wishes I'd had the thing whipped out, especially as I have a non-secreting tumour so the regular follow up PSA tests are not a reliable indicator as to whether the cancer is still there and growing. That said, I met a guy in the waiting room while having my EBRT. He'd had his prostate surgically removed four years previous. Told me he thought he was "cured". Then four years on a routine blood test showed his PSA had rocketed. So he was back in for EBRT.

Not sure what point I'm making here to be honest, other than no option offers a 100% certain outcome, and all options can and will have a knock-on effect on your life.

Edited by member 24 Jan 2021 at 21:38 | Reason: Not specified

User

Posted 25 Jan 2021 at 01:37

Study results for treatment can be represented in the form of an elipse, shown here fot Low, Intermediate and High risk so a generalization can be made that the results are better or worse than others for a particular treatment. However, these treatment results tend to overlap in part, so an individual may benefit more by having a treatment that is generally less successful. Also, side effects don't seem to have been taken into account and these could be a very important aspect for some men when decision making. https://prostatecancerfree.org/compare-prostate-cancer-treatments/

Edited by member 25 Jan 2021 at 01:38 | Reason: to highlight link

Barry

User

Posted 25 Jan 2021 at 14:43

That's an interesting piece Barry. My Gleason was 8 which puts me in high risk even though the other 2 measures are low risk.

I compared RP with RT on the ellipses. RP looked worse but I'm not so sure it is when looking at the individual samples. It looks like there are more RP specimens especially in the later years. That might be because of the type of patient, the state of the technology, or that RP patients last longer and that might be because of age, etc.

Should we take the ellipses as a genuine summary or just a convenience? It needs more looking at. There is a button for looking at the study and I might get to that. Good piece.

Regards
Peter

User

Posted 27 Jan 2021 at 16:15

I looked into all treatments for a long time, and nearly had Brachytherapy. In the end I went for surgery. The Brachytherapist I spoke to, plus the reading I did, suggested that Brachy was best suited to those with scores slightly lower than mine and with the problem not too close to the prostate edge. (I started within their 'range' but my score was, as is typical, rising). I'd ruled out RT because I already had IBS. I think they were still prepared to do Brachy but I felt that already being outside the ideal profile for it, it was a risk I didn't fancy.

User

Posted 30 Jan 2021 at 17:30

A brief update for you all - Decided to go for the surgery option. Being totally honest with you and myself I never really liked the idea radiotherapy, regardless of how simple! It was all made out to be. The whole concept it has never sat well with me and being an engineer by profession the thought of just getting rid of something that’s gone wrong as opposed to trying to mend it seems a much more sensible idea, rightly or wrongly. Given my age (51) and the total lack of any previous problems with ED and my waterworks I’m hoping that with time and a bit of good luck things should go well. I’m in a very fortunate position as I have private health cover through my wife’s work policy, so have been able to get things rolling very quickly. I have spoken to 2 surgeons about the operation, the first one in Manchester, got on very well with him and felt confident he and his team would do as good a job as they were able to , unfortunately he was unable to give me a definite date due the covid situation, he didn’t seem to think a short delay would impact the outcome but impatient me had already made his mind up so didn’t want to wait any longer than necessary. Info on here and some time on the net lead me to another in Birmingham. I managed to get an appointment within the week and again I’m super impressed and super happy with the surgeon and clinic so far. After looking at the scans and biopsy results he is confident he can spare both nerve bundles and has given me a high probability of being able to remove all of the tumour during the operation. I realise that surgeons are most definitely more Tigger than Eeyore but he’s done 3000 of them with a good degree of success, so I guess he knows what he’s talking about. The clinics before and aftercare also appears to be of a high standard and the operation will be at a Covid green/free hospital in Solihull so that’s hopefully one less thing to worry about.

My first counselling session with a nurse specialist is in a couple of weeks, MDT review on the 9th , Pre op and covid swab the week after that then surgery on the 22nd of February, what a rollercoaster start of 2021 !

Edited by member 30 Jan 2021 at 21:47 | Reason: Spelling

User

Posted 30 Jan 2021 at 17:48

Really glad you're settled on your way forward Philip. Hope it goes perfectly.

User

Posted 30 Jan 2021 at 18:04

Hi Philip,

Sending best wishes for your upcoming surgery, I mentioned in an early post that I had surgery on the 25th November 2020.

I have made great progress no problems with the continence, but still do the kegel exercises which I started as soon has I made the decision to have surgery and like you had no problems prior but realised you need to strengthen the muscles there pre and post op for life.

I can honestly say it was not a bigger deal as I thought it would be, a bit of advice stop the pain medication ASAP it causes constipation along with the anathesectic, the only discomfort I had and I stopped them after 2 days paracetamol are fine, take the laxatives they prescribe whatever you do.

The only other bugbear is the Foley catheter, but it is a necessary nuisance, just keep everything clean sleeping is awkward but you get use to it, change to a night bag surprising how much you pass.

Regards

Daily

User

Posted 30 Jan 2021 at 19:54

Hi Philip,

Glad you have made a choice. You started a really good thread with that question and we got some well balanced arguments.

Dave

User

Posted 07 Feb 2021 at 23:31

The risk group classifications there rank T2c as high-risk: I've seen it ranked as intermediate risk (e.g. this 2015 paper), and was wondering what is it about the cancer being in both sides that makes it high-risk?

User

Posted 08 Feb 2021 at 01:28

T2c is sometimes on the intermediate risk side, and sometimes on the high risk side, depending which paper you read. The "risk" is that of there being micromets outside the prostate which don't show up on a scan, and later cause recurrence.

I might guess that if you've had it long enough to be on both sides, it's also more likely to be outside. However, prostate cancer is often multi-focal (starting in several places separately), so this may not always be the reason it's on both sides.

User

Posted 08 Feb 2021 at 13:05

Originally Posted by: Online Community Member

The Predict Prostate tool also groups it with all T2 stages.

I'm GG2 - Gleason 7 (3+4) in two cores, 3+3 in one - nothing on DRE, 6.7 PSA, ok PSA density and doubling rate, contained (N0, M0), asymptomatic...it's just the T2c that seems to be much less favourable risk.

User

Posted 08 Feb 2021 at 13:14

update

Poor chap having his op on the same day as me has had his upgraded and now needs the full day. I have been booked in for the week after :-(

Dont suppose anther week will make any differnace to the outcome but its another week of stress I could have done without. Atleast my covid jab will be fully working by then

cheers

User

Posted 08 Feb 2021 at 13:19

Was his upgraded as a result of a scan?

Good luck with the op!

User

Posted 08 Feb 2021 at 14:59

sorry not sure. dont even know if its even prostate related. it was the hospital that re-scheduled not the surgeon.

User

Posted 12 May 2021 at 14:16

Update

Nerve sparing Open RP - 1/3/21 In Solihull

TWOC - 8/3/21

Follow up review with surgeon - 21/3/21, Histology showed clear surgical margins. No evidence of spread outside of the prostate, so the early signs are promising.

12 week PSA test in a couple of weeks !

It’s just over 10 weeks since surgery, recovery going very well. The wound is healing nicely, easily able to walk about 2-3 miles a day after about 4 weeks, very tired at first but loads better now. Up to about 5-6 miles now in one go but not every day. Lots of weird aches and pains, and a couple of really painful areas (not all the time only when i bend down) a couple of inches either side of my big scar. No infection so I'm guessing it's just muscle/nerves repairing and will hopefully get better.

I was dry pretty much the day after the catheter came out. Had one little accident but that was 100% my fault as i was doing something i was warned not to do (bending, twisting and pushing all at the same time !!). Before the surgery I was way more concerned about the incontinence side of things , but thankfully that doesn’t seem to have caused me much of a problem. However (unsurprisingly I suppose) there is absolutely nothing there erection wise. Having never had a problem before the surgery I was stupidly expecting at least something fairly soon after surgery. But after trawling this site for info I now realise I have unfortunately, vastly underestimated the issue. This side of the recovery it is starting to get me down a bit but hopefully things will improve with time. I'm on 5mg Tadalafil daily and getting to grips with Somaerect vacuum device. After 3 weeks of steady use I'm back to almost full size so it does work, but its brutal and you certainly know you have done a work-out when you're finished, and there is no way one of those rings is going anywhere near it, the high tension ultra rings look like they would cut it clean off!!! Can't see me ever using it for anything other than the rehabilition side of things.

No stirrings from the Tadalafil so might try a Viagra as well to see if that has any impact.

So bloods in a couple of weeks and hopefully a good result so i can reduce my stress level a bit. I have blood cancer as well (under control and responding very well to some insanely expensive treatment) and the covid thing is a real risk for me so I'm fit to burst with stress at the moment, having one less thing to worry about can only be a good thing.

All the best

Finally :-

A message to all those 'younger men' with no previous ed issues reading this, who are currently doing what i did. The ED side effects are a real problem and WILL more than likely (unless you are very lucky) take many months to resolve themselves, maybe years. Do not underestimate it, like i did. Prepare yourself for the real possibility that he won't be working for a while. I didn't and I'm sure that's part of the reason i feel so down now.

User

Posted 12 May 2021 at 21:41

Hi Philip,

You're making great progress.

Try not to let the ED part of your recovery get you down, it can take months, but time passes.

Like you, I underestimated the issue, and the effect it would have on my state of mind. It gave me a miserable two or three months, but things started to really improve at around 6 months.

One other thing.. I tried sildenafil (viagra) as well as tadalafil expecting a miracle, only to feel hugely disappointed when it didn't work, probably because it was too soon. Months later, however, I can say it does work(ish) for me.

Hope this helps and good luck.

Kev.

Edited by member 12 May 2021 at 21:43 | Reason: Typo

Notification

Join the online community now.