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

Notification

Error

123>

Waiting for surgery but having second thoughts.

User
Posted 11 Apr 2019 at 09:51

After a well man clinic, at the age of 60, my psa was found to be 4.8. With no symptoms the decision was made to watch and wait and 4 years later it had gradually risen to 6.6.  Eventually referred for mpMRI which showed ‘abnormalities’’. The following Trus biopsy gave a Gleason 7 (3+4) and was told 100% of the samples on one side we’re cancerous and 30% the other. As a fit 64 year old, with no symptoms whatsoever, this news came as a real shock me and my wife. The Urologist suggested radiotherapy or robotic surgery, but recommended surgery as with RT the cancer could return.  As I can’t imagine with living with cancer cells in my body, I’ve agreed to have the surgery and I’m now 3 weeks into the pathway.


I probably shouldn’t have done this but I’ve just been reading the forum and seeing the reports of post surgery issues (incontinence, ED, shorter penis etc). I’m now having concerns that I’ve made the right decision, but equally I do want the cancer cells gone if possible. Any advice or reassurances gratefully received.


 


 

User
Posted 11 Apr 2019 at 13:39
Hi Neil,

You are really asking the $64,000 question to which there is no real answer. So, two questions for you:

Have you ordered or downloaded the ‘Toolkit’ comprehensive information pack from this website?

Have you discussed an alternative treatment plan with an oncologist? Urologists tend to favour their own discipline - surgery - and recurrence can and sometimes does recur after prostatectomy, as many correspondents here will attest to.

Best of luck, whatever you choose. Let us know how you get on.

Cheers, John.
User
Posted 11 Apr 2019 at 18:47
Evening Neil,

Only you can make your decision as only you will live with the consequences, and hopefully for a long long time!

I wonder, what made you make your initial treatment choice in the first place?

And then, is it really a few stories here of ED, incontinence and a shorter penis that has caused doubts? So you weren't worried about the possibility of death?

At my RRP it was explained to me that there was a 1 in 400 chance of death on the table. Make sure you are not number 400. More likely then, there is a chance of not death.

Incontinence - is a possibility. Equally, no loss of incontinence is a possibility.

Erectile disfunction - is a possibility. Complete loss, partial loss, intermittent loss. Oh, and don't forget the possibility of no loss. You may be as rampant as before.

Statistics of so many thousands of people who have had what you may be contemplating are a guide, sure. But the only statistic that matters to you is your statistic.

When you make your choice make it the best choice on the information you have at the time, and then don't look back. No point.

You will read of men who chose surgery, as that was apparently the best option for them on the information available at the time. Then on having surgery their cancer had spread but did not show on an MRI, and they then express regrets.

I was T2a on diagnosis, sadly upgraded to T3 on pathology. Thank goodness I made a choice quickly and had its out when I did.

Have a look at my profile, and you will see how successful I and my recovery has been. I have no regrets.

BUT, it may not be the same for you.

You are at the worst stage, where all have been with PCa.

atb

dave

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 11 Apr 2019 at 21:14

Bollinge - Evening John, thanks for the reply. I tried to download the Toolkit but just came up with ‘page not available’, I think the info is available elsewhere on this site so I’ll take a look.  I haven’t spoken to an oncologist but have read plenty about the other treatments available. I suppose my thinking about surgery is if it’s contained and they remove it all then it’s gone. I might be over simplifying things but RT just doesn’t seem quite that certain to me.

User
Posted 11 Apr 2019 at 21:55

Countryboy99  - Evening Dave, thanks for the reply. I suppose my initial treatment choice of surgery was made after I heard about an old friend whose first symptom was back pain - he’d gone within the year. My thinking was that removing the prostate, with all the cancer cells contained within it, has to be more reliable than other therapies that might not zap them all.  The risks and possible side affects of surgery are a real worry to me but the thought of going through RT and having the cancer come back is a bigger concern.  Really pleased your recovery has gone so well, hope for us all.

User
Posted 11 Apr 2019 at 22:14
Neil, RT and RP have almost identical long-term survival rates, so there’s little to choose between them from that perspective. Sometimes there are medical reasons that one is recommended over the other (eg in my own case the MDT strongly recommended RT because my higher than expected PSA indicated a chance of undetectable spread into the lymph nodes); other times it’s a genuine choice. I preferred RT right from the outset so was happy that this was the recommended treatment.

I really would talk to an oncologist and hear the RT side of treatment options.

Very best wishes,

Chris
User
Posted 11 Apr 2019 at 22:56

Chris - Many thanks for the info. I have a few weeks before my appointment so have time to look into all options.

User
Posted 11 Apr 2019 at 23:05
It often works the other way round. Where the cancer is thought to be close to the edge, the MDT May feel that surgery has a risk of leaving some cancer behind and RT will be able to get it all. Some surgeons would refuse to operate on a man with your diagnosis so it is good that you have been offered both routes. Has the surgeon said whether or not s/he intends to attempt nerve-sparing?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Apr 2019 at 23:30

LynEyre - Thanks for the info. I have only seen my urologist so far, he was the one that suggested the two options, but both him and the Macmillan nurse recommended surgery for my case. My meeting with the surgeon isn’t for a few weeks yet, I’ll definitely ask him about the nerve sparing. I’m intrigued now, why wouldn’t a surgeon want to operate on a man with my diagnosis?

User
Posted 11 Apr 2019 at 23:34
Ignore me - I misread your post as “100% of each core was cancerous” rather than “100% of the cores were cancerous”

Is your urologist not going to be the surgeon?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Apr 2019 at 23:43

Got me worried for a minute. I’m being sent to another hospital for the robotic surgery as my local urologist doesn’t do it. I rather glad really, the other hospital has a very good reputation for the procedure. 

User
Posted 12 Apr 2019 at 00:22
To add to the mix,

But bear in mind my experience was 2013.

A urologist - can only recommend a urological solution. That is their specialism. It's all they know

An oncologist can only/will only recommend an oncological solution. That is their specialism. It's al they know.

After diagnosis, the surgeon I first spoke to Mister ONLYOPENSURGERYOPTION (who could only offer open surgery) at that NHST offered open surgery.

I asked for a referral to a NHST that had Robotic option. He made it.

On the day of my RRP the open surgery surgeon attended on his day off to see the fun. I met him later, and he said that if he had had the option to offer me a RRP, he would have suggested it. But the option was no then available in Bucks.

The decision is yours alone.

dave

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 12 Apr 2019 at 00:24

Hi Neil,


All the best, pure coincidence I was updating my profile and had a quick peruse of posts. I've not been on forum for ages.    Feel free to view my profile (which includes info on my brother, he choose RT (he was offered Surgery as an option at 70 yo)). 


Key points =  I was dry after 24 hrs.  Non Nerve Sparing.    ED was a 'challenge' however after +3 yrs quite acceptable and still improving very very slowing. I'm now 4 yrs post op.   The  'PDE5 variants',  had little or no positive  effect, just a 24 hr hangover !, I gave up on them after 6 months.  I take zero meds,


Obviously no semen, which in itself takes getting used to for both partners.   Climacturia very occasionally , (yes I had to  google it !) and spontaneous erections I don't expect, (ie plenty of constant stimulation required) .   


For some reason  I'm  on quarterly PSA testing, although was 6 monthly, however I don't say anything.   Currently 0.02, it has been 'up' to this before and then 0.01.      Worries wife a lot more than me, as 'testing' time comes around.   I hope this helps.           


My birthday at 64 the other day, my older sister phoned me and then reminded me I'm older than our dad had lived (he died PCa at 63).  That puts things very much in perspective. I'm so fortunate.        


     


 


 

User
Posted 12 Apr 2019 at 00:58

Dave - I had no idea I would be sent me to another hospital for the robotic surgery but I’m quite relieved, they do loads of these procedures and are highly regarded in the area. Without the big incision of open surgery, I’m hoping to be back on the golf course before the season ends - fingered crossed!

User
Posted 12 Apr 2019 at 01:09

robgsr - Glad your procedure went well and you're now out of the woods. To be honest, if the surgeon says he needs to take the nerves I’m not going to object, my life is more important. Like you, I’ve already outlived my father (lung cancer at 63) as you say it does put things into perspective. 

User
Posted 12 Apr 2019 at 02:03
You can order a hard copy of the Toolkit by post. It is packed with useful information about this disease.

Cheers, John.
User
Posted 12 Apr 2019 at 08:15

Thanks John, just placed the order for the Toolkit.

User
Posted 12 Apr 2019 at 10:16

My diagnosis was very similar to yours and treatment options were the same, not that I can say one way or the other is right for you, but I chose surgery and happy with the decision, continent and starting to regain erectile function 7 months post op. I just wanted the cancer out of my body, also glad I chose surgery as the cancer turned out to the aggressive type and final gleason was 8, I had LRP with nerve sparing. Hope all goes well for you what ever you decide  


User
Posted 12 Apr 2019 at 12:36

 

"urologist - can only recommend a urological solution. That is their specialism. It's all they know"


Not always the case Dave, my Surgeon said he would remove my Prostate if I was set on it but said he was doubtful he could remove all the cancer so he recommended RT.  In fact he personally introduced me to an Oncologist who was in a nearby office.   There have been other cases too where Urologists have recommended RT over surgery for various reasons.  It is right though that where surgery is a good option Surgeons will recommend their discipline, especially where this treatment is backed by the MDT.

Edited by member 12 Apr 2019 at 12:39  | Reason: Not specified

Barry
User
Posted 12 Apr 2019 at 13:01

Blighty - That’s great news, glad it all went so well for you. I’m of the same mind, I just want the cancer out my body now.

 
Forum Jump  
123>
©2025 Prostate Cancer UK