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User

Posted 16 Feb 2019 at 18:02

hello all,

Today i have finally been told i have PCa. last august i was having urinary problems and the MRI was PI RADS 3 and a CT scan was clear (of my abdomen). 6 weeks ago i had another MRI which showed PI RADS 2, which i thought was a positive sign! I was then offered either a biopsy or another MRI in 6 months...i took the biopsy which was a fusion one completed 2 weeks ago.

after most telling me they were expecting inflammation one core was found to be cancerous and scored 3+3.

The Prof (well known in the Guildford area) offered active surveillance as standard protocol but i have already decided on surgery as the prostatitis is uncomfortable now for 6 months...

I am unfortunately a natural worrier, so despite him saying surgery is curative i fear the worst. I have family history and none of it good, hence the dread.

in a bit of shock but keen to know of others in a similar situation and how they deal with it. i think the operation will be in 4 weeks...

Thanks for listening,

Mark

User

Posted 16 Feb 2019 at 19:10

One cancerous core at Gleason 3+3 is as close as you can get to not having cancer at all. Other than the side-effects of the surgery (which should certainly not be minimised - this is a life-changing operation), I'd say that you have every reason to be extremely optimistic, Mark!

All the best,

Chris

User

Posted 16 Feb 2019 at 19:24

Thanks for the reply Chris. i am apprehensive about the operation but would be more anxious if on ’active surveillance’. Not quite sure what to expect, lack of erections won’t bother me for a while, but a catheter is never fun and i am guessing at some post-op pain and discomfort for a while! The Prof did tell me what to expect but i think it all went in one ear and out the other due to brain switching off!

User

Posted 16 Feb 2019 at 19:31

Yes, this is major abdominal surgery which cuts through all sorts of important muscles. You shouldn't be in any real pain (that's what drugs are for!) but you'll certainly be very sore and not able to lift anything heavier than a loaf of bread for probably a month after surgery, and it'll take probably three months to get back to close to normal fitness again. Just take things easy and listen to what your body is telling you. Don't overdo things.

Chris

User

Posted 16 Feb 2019 at 19:37

Thanks again Chris, it helps to know others are out there and been through this!

User

Posted 16 Feb 2019 at 20:10

I'm actually being treated with radiotherapy for my prostate cancer, Mark, so I haven't been through this surgery myself. However, when I was having all my scans for my prostate cancer a localised tumour was found in my left kidney, so in September last year I had my kidney removed, which is surgery that cuts pretty much the same muscles, and involves the same recovery path, so I do have personal experience of what getting over this type of surgery is like!

Cheers,

Chris

User

Posted 16 Feb 2019 at 20:12

If I were in your shoes I would go with AS for as long as I could get away with it. But you’ve made your decision, and the best of luck.

You are in good hands with Professor Whocannotbenamedhere from the Guildford area!

Cheers, John

User

Posted 17 Feb 2019 at 09:24

Morning Mark,

Sorry to hear that you are here and that you are a natural worrier.

If I read some of the comments above about what supposedly will happen to you post surgery, I too would be very worried.

May I just put a few of the previous comments into context for you? It may allay some of your fears.

What sort of surgery have you decided upon?

Generally open surgery has more of an impact post procedure.

Robotic, generally has far less impact.

The side effects of surgery or any procedure should not be minimised, and you should be aware that they are all potential side effects.

Please let us know what you have opted for?

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 17 Feb 2019 at 12:46

Which part of my post about the recovery process would you disagree with, Dave? I believe it's an accurate summation, based on what I went through with robotic surgery and what I've read others say, too. I'm certainly not trying to alarm Mark, but to give fair warning that he's facing major surgery which does take several months to fully recover from.

Cheers,

Chris

User

Posted 17 Feb 2019 at 13:17

This might be of help for Mark, as I think my surgeon from Guildford is the Professor he alluded to. Top man!

https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy

Edited by member 17 Feb 2019 at 13:24 | Reason: Not specified

User

Posted 17 Feb 2019 at 22:59

Evening Chris,

My post is not about disagreeing with you. I am not disagreeing with anything that you have posted about your recovery process or that you have been through. Maybe you have had not the best of outcomes after Robotic surgery?

But your misfortune or lack of successful recovery does not mean that it will happen to everyone else, and you may not wish to suggest that it shall be so.

To be clear, I had RP May 2013. Did not follow the suggested recovery pattern and exercises, or meds routine. I have always done my own thing regarding my aimed recovery, and it has worked fort me.

But to state that someone will not be able to lift a loaf of bread after the process is potentially misleading. You don't know what they may be able to do or when after, whatever? I was up at 4am creosoting fences and landscaping shorty after my op.

Okay, I had an issue with the catheter. But. But after robotic Op in May 2013, I've made a splendid recovery, so far, and have a great dry life and okay* sex life.

And that may be the outcome for others, you don't know.

* ace

atb to you all in this difficult time for all of us

dave

Edited by member 18 Feb 2019 at 08:41 | Reason: Not specified

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 18 Feb 2019 at 11:33

Hello all and thanks for the various replies.

Yes, it is professor that cannot be named from Guildford who also cannot be named and works at the Shard. He seems untroubled by the whole thing whereas I am waking at 4am sweating and retreating into myself, which is a bad policy at the best of times! Have seen close family members suffer with Cancer hence by fear at the mere word...surely time for a name that doesn't strike immediate dread? Maybe "prostate malfunction"?

Just to repeat, I have been on this path for 6 months or more now. Original diagnosis was prostatitis and PSA 0.7. He picked up a firm side on DRE and that was then an MRI and CT scan were ordered. MRI showed PI RADS score of 3 and with all the other scores (CT clear) he suggested not to biopsy. Fast-forward 3 months symptoms still bad so he performed a Cystoscopy (that wasn't fun) and then a second MRI. The second MRI showed PI RADS of 2 but he ordered the biopsy after giving me the option of waiting another 6 months. Bearing in mind I have a lot of prostatitis like symptoms I opted for biopsy. Surgeon doing the biopsy was surprised and said "we don't normally biopsy PI RADS 2.

Fusion biopsy happened, all cores fine except 1 that showed Gleason 3+3 although I know that can change after it is fully examined etc.

He gave me two options - AS or surgery. Surgery he told me has 98% chance of removing it all unless Gleason upgrade to 7 at which point rate is 95%. He was very thorough on describing the issues with surgery but also quite good at relaying his own experiences with most patients, which seem to have good outcomes!

He confirmed confined to Prostate and T1c being the stage.

My own thoughts are that I was 'lucky' to get prostatitis that was chronic as it pushed more tests along. Despite the hell of 6 months I am at least somewhere with a diagnosis. My problem is anxiety and worry...which has plagued me for 30 years in various guises.

Scary thing as well is it seems the prostatitis was the only thing promoting further tests...had I not had that I don't think I would have even had a biopsy...

More thoughts are very welcome and I am reading advice avidly as this seems a lonely place in my head right now...

Thanks again,

Mark

User

Posted 18 Feb 2019 at 15:55

Hi Mark,

I would reiterate what I said before. Consider AS as advised, and try and get the prostatitis sorted before thinking about prostatectomy, with your such apparently ‘low-grade’ cancer.

RALP is a major life-changing step, even in the capable arms of Da Vinci and the hands of his sidekick, Professor Whocannotbenamedhere.

Has your prostatitis been investigated in depth, er, I mean besides your cystoscopy? Get the Prof to have a look at (or down) it😉. He is one of the top urologists in Britain.

Cheers, John.

User

Posted 18 Feb 2019 at 16:37

Hi John, yes he has been up and down it with a scope etc...thinks it is more nerve related but he seems relatively keen on the surgery as it can remedy both situations!

I am not going to be good trying AS and there appear to be some stories on here of people with a low-grade that, when analysed, becomes high grade! As I am 51 I am going with his advice, and he did offer AS BTW, of surgery and try to get it out of the way...I know it isn't a walk in the park but my head is a worse place to be when I have anxiety and worry going on. Maybe a little quick, but for me I cannot see another rational option (all things considered)!

But thanks for the advice, I am reading and considering it all...

Rgds,

Mark

User

Posted 18 Feb 2019 at 16:47

When I say ‘life changing’, I mean you will be infertile, will no longer ejaculate and as result orgasms are likely to be somewhat muted, and there may be incontinenence, reduced length and potential erectile dysfunction.

I have only the latter two, but as a result my surgery may prove to be ‘life lengthening’.

No regrets.

Cheers, John.

User

Posted 18 Feb 2019 at 17:01

Thanks again - all those effects I think I can deal with, incontinence being the main concern! I already have plenty of kids and sex isn't always high on the agenda these days.

I do wonder if I am jumping the gun a little. The letter from the Prof says that 40 cores were taken and only 1 core shows 1mm of adenocarcinoma, Gleason 3+3. That does seem small from a very targeted fusion biopsy...

Rgds,

Mark

User

Posted 18 Feb 2019 at 17:06

As I said in my original reply, Mark, you're as close as it's possible to get to not having cancer while actually having it. I can completely understand the "get it out" feeling, but this is major surgery you're contemplating which does have life-changing effects. I'd think long and hard about it.

Chris

User

Posted 18 Feb 2019 at 17:10

Thanks Chris - appreciate the reply and I am thinking - although thinking for me usually involves worrying or over-analysing! Doesn't seem straight-forward does it?

Rgds,

Mark

User

Posted 18 Feb 2019 at 18:57

Mark,

There are so many ‘What if’s?’ with PCa.

I will never ask myself ‘What if I’d had a different surgeon?

Cheers, John.

Edited by member 18 Feb 2019 at 20:22 | Reason: Not specified

User

Posted 19 Feb 2019 at 08:31

Why is your consultant advising removal should be your question and how will this improve your quality of life.

If it is because of recurrent prostatitis or because you are genetically suseptable to a high grade PC then consider having it removed.

If it's because of 1 G6 core and a T1c then get a new Urologist.

Being blunt with that diagnosis you are more likely to die from the op than PC in the next 10 years.

Edited by member 19 Feb 2019 at 08:32 | Reason: Not specified

User

Posted 19 Feb 2019 at 08:41

I just put your figures in this tool:
https://webcore.mskcc.org/survey/surveyform.aspx?preview=true&excelsurveylistid=4

It works out your chance of dying from PC if you do nothing and it came out at 3% so you will be getting a 1% improvement by having major life changing surgery.

User

Posted 19 Feb 2019 at 16:50

The main reason is two-fold (for the op)

1) I have quite bad prostatitis and that has not been helped by alpha blockers, antibiotics, heat, etc etc and it is quite draining to have for nearly 8 months now

2) I have a perhaps warped view of Cancer. My Mother suffered badly, and 2 years ago I lost a beloved sister to this hideous disease. My view is not good therefore I am struggling to see AS as a good pathway given the 3 monthly testing, yearly biopsy etc. The waiting in between the tests so far (6 months) has not made me a happy person. I am hoping the surgery will at least relieve some anxiety along with the prostatitis and the cancer that is there

Perhaps not rational in argument, but rational to me from what has been happening in the past 6 months. I do appreciate the effect surgery does have and I know there could be a bunch of issues, but having also spoken to a nurse today I still see it as the best direction for me (and my brain)...

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