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User
Posted 06 Aug 2020 at 15:19

Hi All,

Hope someone can point me in the right direction here.

Just been Diagnosed about 3 hours ago. :((, via the phone!

Age 58. Had symptom of painful ejaculation from last October , saw GP, PAS level of 8.2 in April, put on antibiotics. All cleared up, but 2nd PSA of 8.4 in  early July. Had biopsy done last week., results was a Gleason score of (I think) 4 + 3 =7.  Not sure of my T level didnt say but was told I have other factors.??..and told it was aggressive however. have a small prostate?

Been told that I need another scan, sorry no idea what type then if Clear (??), Have a meet, then have a Da Vinci Robotic Prostate Surgery done. I assume to remove the whole prostate. No Other treatments being offered.  WHY?, However seems I am with the Top person which is good, but need to know what questions to ask now.......

Sorry if this doesnt make sense, but a bit er "out of sorts" at the moment and in "Panic" mode. Consultant seems to think I will be ok however.

Many thanks all

Paul

User
Posted 07 Aug 2020 at 01:26

There are two possibilities -
1. The urologist has only offered surgery because that is what urologists specialise in, and if you ask to see an oncologist, they may offer you alternatives like radiotherapy or brachytherapy; or

2. The 'other factors' are that you don't have adenocarcinoma (the most common type of prostate cancer) but one of the rarer types that don't respond so well to RT / HT and are best dealt with by surgery. There are at least 27 types. 

So as suggested above, you can ask why surgery is the only option at the moment, and about whether the G7 is a 3+4 or a 4+3 and all the other things suggested but the most important question may be "what type of prostate cancer is it?"

Edited by member 07 Aug 2020 at 01:26  | Reason: Not specified

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

User
Posted 31 Aug 2020 at 20:29
It is almost always easier to bear once the decision is made.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2020 at 20:51

Originally Posted by: Online Community Member

I do however feel strangely “happy” that I am on this route, I just didn't fancy taking my chances with surgery.

Sound advice is; if you can't decide then toss a coin. If you find yourself praying that it will come up one side and not the other, then put the coin back in your pocket and go with what you clearly wanted anyway. 

Dave

User
Posted 31 Aug 2020 at 21:38

Think I would have gone exactly the same route in your position. Hope everything goes well 

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User
Posted 06 Aug 2020 at 16:07

Paul

Typically, but not always the surgery and RT with or without HT are offered. Have you had any previous Radiation therapy.

The scan will either be bone,CT or possibly both.

There is some useful information in the download kit and the nurses on here are very helpful.

Thanks Chris

User
Posted 06 Aug 2020 at 16:09

Hi Paul

I completely understand what you are feeling at the moment. I’m 53 and was diagnosed last December with Pc the same Gleason score, and my psa was 13, my prostate was enlarged, I had no symptoms at all so was a real shock.

The next scan would probably be a bone scan which will determine if the cancer has spread outside of the prostate. This is a painless procedure, although they inject you on arrival and ask you to return in 3 hours for the scan. Once you’ve had it it’s usually around 2 weeks before your consultant will call you in for the results.

Regarding your options, my understanding is this, if you are still fairly young offering HT and RT is not the best option as side effects of these treatments can manifest and cause problems. HT and RT are usually offered to older gents. The general opinion is that Robotic Assist Prostecomy is deemed to offer the best chances of getting rid of the cancer. Obviously there are side effects with this procedure also, and I advise you to read previous posts on this site as these can be very helpful.

I had my surgery on 9th July and seem to be doing ok. The build up to the surgery is stressful but the actual operation is a breeze as you’ll asleep and everyone is very helpful when you wake up. The catheter is uncomfortable and a hinderance but will be out in 10 to 12 days, also the staples aren’t a problem at all and virtually painless when removed. One tip is to buy a Ugofix catheter bag socks they are such a game changer, costing approx £10 for 4.

I know this probably a lot to take in but feel free to msg me anytime, if I can help then I’m only to happy 

Regards

Carl.

User
Posted 06 Aug 2020 at 16:10

Hi Paul,

I'm sure its all a bit of a shock (as it was for any of us) but you should get plenty of help on here.

Have you already had an MRI scan?

Assuming that the cancer is all contained within the prostate then nerve sparing surgery may well be a very viable option.

However, RT with possibly HT may be another option. Have a look at my profile for a bit of background. And ask away on here

 

Edited by member 06 Aug 2020 at 16:11  | Reason: Not specified

User
Posted 06 Aug 2020 at 16:39

Thanks Chris and Carl for the Quick reply.

Sorry  RT and HT terms meaning, radiotherapy Therapy and Hormonal Therapy?.

I have had a MRI scan, which was inconclusive, other than a "fuzzy" area, hence the Biopsy.  Thanks for Info on 2nd scan, makes sense that.

 

So with this Robotic Assist Prostecomy , thats the whole removal of the prostate I assume?

Seems quite drastic, but have read up about it and does seem the best way forward in getting rid of the cancer. .

Cheers

Paul

 

 

User
Posted 06 Aug 2020 at 16:53

RT and HT as you have summised

It is the whole prostate out and with it hopefully the whole of the cancer.

Operation is OK and expect several weeks of recovery but nothing too bad ( considering its a major operation)

Main concerns generally are 

incontinence- for many this is short lived

erectile disfunction- slower recovery but can be achieved depending upon a number of factors

Edited by member 06 Aug 2020 at 16:54  | Reason: Not specified

User
Posted 06 Aug 2020 at 16:57

Thanks Mike, That Helps a lot.....

Paul

User
Posted 06 Aug 2020 at 17:07

Some of things you will want to know

Is it Gleason 4+3 or 3+4

From the biopsy how many cores had cancer, on which side(s) and what percentage

What stage is the Cancer T1 then a letter, T2 then a letter , T3 then a letter 

Anything spread out side of the prostate or close to the prostate edge

Is he looking at nerve sparing? Both sides or just the 1

 

User
Posted 06 Aug 2020 at 19:59

Where are you having your surgery done ?

User
Posted 06 Aug 2020 at 20:31
Just to say Robotic Surgery certainly shortens the recovery period but in some cases 'open' is considered more appropriate and there is little to choose between eventual outcomes. If a bone scans shows cancer has gone to bone it may be that the surgery option is withdrawn and treatment plan rethought but hopefully this won't be the case.
Barry
User
Posted 06 Aug 2020 at 21:01

Hi Paul,

Wow.. No way to hear news, even in these current restrictions.  Take it easy.   Download toolkit and slowly build up knowledge . Do you have anyone to immediately support and share with ?

Terms are all relevant, aggressive does not mean you have days or weeks to make decisions.

Post and ask questions, there is more than 1 solution.

 

All the best 

Gordon

User
Posted 06 Aug 2020 at 21:46

Hi, 

Most people don't recall exactly what was said.  It can be better to go with someone else or to have a Macmillan Nurse/Specialist Nurse who you can ask.

Some doctors can make you more worried using the term aggressive.   Perhaps the 4+3 is the reason.   Although that is the 5th level out of 7.  The same grade mine was diagnosed as.

Being offered an op is good.  Presumably subject to a bone scan, unless they're doing something else.    They fit me in for a bone scan with a few hours notice.  You have a nuclear injection a few hours before then go away and come back.  I think they were having lunch while I was being scanned, it takes about half an hour no messing about with fancy dress.

You could ask why they didn't offer RT or alternatives like Brachytherapy.   Although I'd have been happy just to be offered the op if it was being done quickly or you particularly wanted RT.   Sometimes if you see a surgeon they might offer you surgery and you have to ask for something else although there should be a full team, The MDT or multi-disciplinary team, who have reviewed your case from all perspectives.   Perhaps with Covid they're more limited.

You could ask if he'll save any nerves and roughly where the lesion is located.  He did a little drawing of mine.

Some people are willing to wait and look at options but I wasn't.  Largely because it was near the edge of the prostate.

All the best, Peter

User
Posted 07 Aug 2020 at 01:26

There are two possibilities -
1. The urologist has only offered surgery because that is what urologists specialise in, and if you ask to see an oncologist, they may offer you alternatives like radiotherapy or brachytherapy; or

2. The 'other factors' are that you don't have adenocarcinoma (the most common type of prostate cancer) but one of the rarer types that don't respond so well to RT / HT and are best dealt with by surgery. There are at least 27 types. 

So as suggested above, you can ask why surgery is the only option at the moment, and about whether the G7 is a 3+4 or a 4+3 and all the other things suggested but the most important question may be "what type of prostate cancer is it?"

Edited by member 07 Aug 2020 at 01:26  | Reason: Not specified

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

User
Posted 07 Aug 2020 at 09:05

"Regarding your options, my understanding is this, if you are still fairly young offering HT and RT is not the best option as side effects of these treatments can manifest and cause problems. HT and RT are usually offered to older gents. The general opinion is that Robotic Assist Prostecomy is deemed to offer the best chances of getting rid of the cancer."

This isn't right, Carlos. It may have been true for you but that doesn't make it true for everyone.

"RT can manifest and cause problems" - there is a small chance that it can increase the risk of bowel or bladder cancer some 15 / 20 years later but I think the increase is 4% or something like that, so negligible when deciding on a treatment to prevent you dying of prostate cancer rather sooner than 15 / 20 years.

It is also not right to say that surgery gives the best chance of getting rid of the cancer. A large scale European research project published last year (or the year before, I am not sure now) showed that all things being equal, surgery, radiotherapy and brachy have almost identical remission rates at 10 years ... it is the side effect rates that vary, not the success rates. Having said that, another research project found that AS has almost the same remission rate as active treatment.

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

User
Posted 07 Aug 2020 at 10:59
The first thing Paul, is to “calm down dear”.

Sorry to hear of your unfortunate news, but from what you have said prostatectomy is not your only option, and your cancer diagnosis is not a death sentence, to which many others here are able to attest.

It was a shock for you, but not for me when the consultant - (then face-to face) - told me the news, as I had already twigged that a rise in PSA from 2 to 16 meant that something was going on.

You will have to wait for your next scan, presumably a bone scan, and then when all the results are in, think about ongoing treatment. If you are scientifically or medically-minded you might like to request all your medical records of those tests from the hospital for a nominal fee.

I had a (was going to write hysterectomy!) prostatectomy over two years ago by a leading surgeon, and I have no cancer, no incontinence, no erectile function and he still owes me 2”, as my only side effects. The surgery and recuperation were virtually painless.

When you have more comprehensive information about your case, come back to us as there is a wealth of knowledge and personal experience here to help and advise you through this hiccup in your life!

Best of luck.

Cheers, John.

User
Posted 07 Aug 2020 at 12:19

Originally Posted by: Online Community Member

 and I have no cancer, no incontinence, no erectile function 

Hi John can you clarify is that "no erectile function" -or- "no erectile disfunction" it could make a big difference to the decision?

 

Dave

User
Posted 07 Aug 2020 at 14:24

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

 and I have no cancer, no incontinence, no erectile function 

Hi John can you clarify is that "no erectile function" -or- "no erectile disfunction" it could make a big difference to the decision?

 

I think in layman’s terms, what I have is a truncated limp dick, useful for pissing through and little else...😉😷😂

User
Posted 07 Aug 2020 at 14:40

Thanks Guys, This is All very helpful. feel a lot better today....

I had a follow up call. The Gleason score was 4+3 and I was a T2, NO letter, as they wanted a 2nd scan. 

I had 10 biopsys done (The surgeon at the time told me 12???). Was told, that 5 were positive which was 60% 4 and 40% 3, 5 negative. ????

The scan  is being done on Thursday at the Royal Marsden, Sutton and the consultant is based in Chelsea. Not sure I I am allow, or should put his name down...He did say, I think that RT/HT was not appropriate in my case.

Thanks again

Paul

User
Posted 07 Aug 2020 at 14:56

Fingers crossed for you for the scan.

Think it was Jan this year that for me staging went to T2 and PSA started to rise (again) Had decided to go for surgery after meeting with him and it all happened on March 23rd this year. 

It was an anxious wait and worrying time pre-surgery but a huge relief waking up afterwards having all gone well.

4 1/2 months on life feels back to normal. PSA undetectable at <0.003. No incontinence issues at all and no ED issues apart from still taking a 50mg viagra for "events" 

Every situation is different but just wanted to give you some reassurance that there can be light at the end of the tunnel.

 

 

User
Posted 07 Aug 2020 at 14:58

Thanks Mike...

 
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