Told operation too risky :(

User

Posted 15 Jul 2018 at 20:06

If Lyn didn’t like you then you’d know by now. She has replied to many of your posts which is a good thing I promise you.

If life gives you lemons , then make lemonade

User

Posted 15 Jul 2018 at 20:40

I type the way I talk - sorry. Amended :-/

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

User

Posted 15 Jul 2018 at 20:49

I know Chris
I use you and Lyn as my benchmark. Simple as........
I am so very tired but thank you all
Night night,............

User

Posted 15 Jul 2018 at 22:12

Night night

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

User

Posted 15 Jul 2018 at 22:18

Don't let the bed bugs bite!

User

Posted 19 Jul 2018 at 22:22

Which bits hadn’t been explained to you?

Definitely affected your treatment options. PNI identified at biopsy is associated with poor outcomes from surgery. 70% in cores is rather high and often that is associated with positive margins. PIN is cancer waiting to happen.

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

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Posted 20 Jul 2018 at 09:39

Thanks Lyn,

All the bumph I have read indicate that positive margins are a reference to surgically removed tissue and the fact there is a higher likelihood of spread outside this tissue? I suppose for me it is a reference to the higher likelihood of spread outside of the prostate as there is evidence of deformed cells on prostate edge?

User

Posted 20 Jul 2018 at 22:11

Comment only: I don't think deformed is the correct terminology - is it "poorly defined"? My original urologist never gave me histopatholagy report and I got it weeks later after specifically requesting it from oncologist.

User

Posted 20 Jul 2018 at 23:48

When they remove the prostate, they encase it in wax and then slice it finely. A positive margin is where where the cancerous cells are touching the wax. So yes, the concern is that in a proportion of those cases, there are also cancer cells outside the wax, which means they are still somewhere inside the patient. But not in all cases.

Poorly defined or irregular are probably better terms from a medical point of view but deformed sums it up.

But you haven’t had surgery so positive margins doesn’t apply to you.

Edited by member 20 Jul 2018 at 23:50 | Reason: Not specified

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

User

Posted 05 Aug 2018 at 20:07

OK folks, consultation On Wednesday so presumably PSA and testosterone checks plus I will be asked how I'm doing. Any advice on what I should ask? Loads of stuff on here recently about the resolution of the PSA check so what is the correct measure?

I am much more chilled than I have been so I can easily deal with the short life expectancy quotes I've had so far. G9 T3b determines this so hey ho! I've had a great weekend and my famlly are great too!! I am happy.
Richard xxx

User

Posted 05 Aug 2018 at 21:32

Rich

For high risk prostate cancer like yours hormones and radiation is standard care. In some circumstances surgery on top may also help. Usually best to go and see more than one surgeon so you get a second opinion tailored to your individual case.

Good luck.

User

Posted 05 Aug 2018 at 21:37

Originally Posted by: Online Community Member

You still have a prostate (I think?) So the normal PSA mesure is the one you want. The supersensitive is only valuable for guys with no prostate.

User

Posted 05 Aug 2018 at 22:06

Thanks gents - yes I still have a prostate - so should I be looking for a PSA vaue of under 1? (i have no idea what that means)???

Edited by member 05 Aug 2018 at 22:07 | Reason: Not specified

User

Posted 05 Aug 2018 at 22:13

Radiotherapy takes a while to lower PSA fully as do the hormones. I have no personal experience of exactly how long but I am sure someone will say - I believe it is up to 6 months? But could be even longer for RT.

But for PSA and prostate cancer lower is invariably better!!

Something to quiz your doc about as to what success will measure in your case.

User

Posted 05 Aug 2018 at 22:13

The surgeons don't want to touch me with a barge pole!! I've had the radiation treatment so Wednesday will be blood test? (why would you not get the blood test first????????) . I mean the consultation is pointless......

Edited by member 05 Aug 2018 at 22:34 | Reason: Not specified

User

Posted 05 Aug 2018 at 22:51

This may just be a 'so how are you feeling' chat Rich - a lot of oncos wouldn't be interested in a PSA test this soon after the RT as it is too early to really tell them anything. And unfortunately, there isn't a definite PSA level that you should or should not have fallen to. They say that you should hit your PSA nadir about 18 months after RT finished - the radiation continues to kill the cancer for a very long time after the zapping has ended.

Even if I am right, it isn't pointless though - it is an important opportunity for the onco to check how you are and for you to ask questions like 'so next time I have my PSA test, what will you be looking for?' 'how will we know this is working?' and to discuss any side effects you are concerned about.

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

User

Posted 05 Aug 2018 at 23:13

Thanks Lyn - thats what I was thinking so if I'm of a similar frame of mind to you I'm happy. Imagine how much you could earn helping old fart PC sufferers?? I have a list of questions to go through. More importantly I have a meeting with the Prostate Survivorship Nurse Specialist on Thursday then with the Maggie's clinical psychologist. This is a result of 3 attendances to support group activities which were simply not appropriate to me. I am hoping to feel very good later this week.
Rx

User

Posted 13 Aug 2018 at 13:33

I've just had my first post treatment PSA result over the phone from my Oncologist.

0.505

Yippeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!! (I think!) :)

User

Posted 13 Aug 2018 at 17:02

Brilliant news :-)

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

User

Posted 13 Aug 2018 at 21:30

Great stuff Rich!

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