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Safe waiting time till operation?

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User

Posted 17 Apr 2016 at 21:02

Sunday 17th April 2016

I was just wondering what folks thought/knew about how long is safe to wait from diagnosis to having the RP. As most of you know, I was diagnosed in February PSA13, local contained one side, no breakout, Gleason 3+4, no side-effects.

My investigations to decide what to have done have taken a while plus Biopsy etc etc. The latest consultant, whom I have chosen, has a wait time of 8 weeks from NOW. He says I only found out by accident, there's no MRI evidence of anything beyond the prostate, so there's nothing to worry about the wait. It will be about 20 weeks since my PSA test discovery...no idea how long ago it all actually 'started' of course! I was checked just because my brother was diagnosed in January. He is 60, I am 56.

The fear always is spread...and when they MIGHT happen. I want this particular surgeon, but another could probably do it in 4 weeks from now.

I am worrying unnecessarily?

Cheers folks,

David

User

Posted 17 Apr 2016 at 22:33

David

Not sure if this helps you or not as we're all different but below is my diagnosis and timeline

I was advised in January 2013 that I had Locally Advanced Agressive Prostate Cancer which had spread outside of the prostate. T3b NO MO Gleason 8 TRUS biopsy shows right lobe 2/3 cores involved Gleason 4+4=8 and left lobe 3/3 cores involved Gleason 4+4=8. Gleason score 8 both lobes, PSA 408. MRI scan shows large tumour invading left half of gland with ECS and bilateral SV invasion and bilateral hydronephrosis no enlarged lymph notes Bone scan normal. TRUS volume 34cc DRE

I started Prostap injections immediately, had TURP op in the following June and started radiotherapy in October 2013 finishing early December so not much happened quickly for me

Arthur

User

Posted 17 Apr 2016 at 23:40

Originally Posted by: Online Community Member

Thanks Lynn. Sound words as ever. Very odd that your husbands scan showed nothing, when there was a lot there. I don't get that.
David

No, nor did any of the specialists. Not only did it not show on the scan ... his prostate was small, even and soft which is probably why they were so convinced his biopsy would be negative and then, when it wasn't, happy to trust the scan that it was very early stage. Thank goodness then that we trusted Mr P who felt there was more to it than the results were suggesting.

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

User

Posted 18 Apr 2016 at 07:08

I had psa 15 in Sept 2014. It took till June 2015 to operate. And it was way too late as I had spread to lymph nodes already. It was partly me dithering scared of treatment , but mostly due to every scan and biopsy being unclear. The only reason they kept looking was due to my racing psa which was 43 at surgery. First TRUS clear , MRI clear. Then bone scan clear. Trans perineal biopsy showed some cancer but not what they expected form psa score. Second MRI and then a CT and then another TRUS before they found the nasty bit high at the back and touching bladder. It's all a waiting game the roller coaster. Doesn't stop for many !Best wishes for you
Chris

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User

Posted 17 Apr 2016 at 22:02

You already know that there is no answer to your question, I think. But this may help
- if they believed your cancer was about to spill out of the gland and race around your body, they wouldn't be offering you the surgery anyway
- generally speaking, this is a slow growing cancer so a few weeks here and there will make no difference now
- if it turns out after the op that it has spread, it has in all likelihood already done that - and not in the few weeks since your pSA test
- common sense would dictate that cancer doesn't wait quietly until it is diagnosed and then go on the rampage

My husband had a PSA of 3.1, G(3+4) and according to the scan the tumour was so tiny it could not be seen. He had surgery 4 weeks post-op despite our surgeon's advice to take a few weeks, have a holiday and do lots of 'what couples do'. I wanted him to wait, to take the advice of the doctor but he wouldn't. It turned out that the cancer was in every bit of his gland and already in his bladder. I don't believe that a wait of 6 or 8 or more weeks would have made it any worse - it must have been there for a very long time and having the op quickly didn't make it any better.

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

User

Posted 17 Apr 2016 at 22:10

Thanks Lynn. Sound words as ever. Very odd that your husbands scan showed nothing, when there was a lot there. I don't get that.

David

User

Posted 17 Apr 2016 at 22:33

David

Not sure if this helps you or not as we're all different but below is my diagnosis and timeline

I started Prostap injections immediately, had TURP op in the following June and started radiotherapy in October 2013 finishing early December so not much happened quickly for me

Arthur

User

Posted 17 Apr 2016 at 22:49

Hi David

My diagnosis was similar to yours. They wanted me to have surgery about 8 weeks after diagnosis - I decided to wait and do some research. I waited over 6 months from diagnosis and decided during that time that I didn't want surgery and decided on brachytherapy. No regrets.

User

Posted 17 Apr 2016 at 23:40

Originally Posted by: Online Community Member

Thanks Lynn. Sound words as ever. Very odd that your husbands scan showed nothing, when there was a lot there. I don't get that.
David

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

User

Posted 18 Apr 2016 at 06:46

Thanks.

Devon lad....yes you have similar stats to me indeed, but a few years older. I had been considering brachy but being young thought it had longer to go wrong!

But blimey...isn't the waiting throughout really hard?!

User

Posted 18 Apr 2016 at 07:08

User

Posted 20 Apr 2016 at 12:37

Originally Posted by: Online Community Member

Thanks.
Devon lad....yes you have similar stats to me indeed, but a few years older. I had been considering brachy but being young thought it had longer to go wrong!
But blimey...isn't the waiting throughout really hard?!
D

David that's up to you. Surgeons will often use the fact that you are younger as a reason for surgery over other treatments (they did with me) but it doesn't stack up when survival/'cure' rates are the same. However, as a rule, side effects such as continence problems and erectile dysfunction are much less of a problem with brachytherapy. You could argue that being younger one would prefer to have more chance of sustaining erections and continence - it was certainly a factor in my decision although not the only one.

I didn't find waiting difficult at all TBH as I was told by the surgeon that it was very unlikely that waiting that long would result in spread of the cancer. The cancer was well contained with no detection re. DRE etc - I may well have decided not to wait as long if the cancer was thought to be close to the prostate wall. To me it was more important to explore the various solutions and make a decision myself which treatment to go for, rather than be told which treatment I should have.

We are all different in this regard- many men just want the cancer removed as soon as possible and can't hack the thought of it being 'killed' off slowly - even some men with with localised cancer, low PSA's and Gleason 3+3. If that was me I would have opted for active surveillance. As I say we are all different and it's just as much about what we are comfortable with re. treatment. However, we should know all the facts in order to make that decision and most men I have spoken to about this say they were confused and many men are not offered a choice when they should be.

Good luck.

User

Posted 20 Apr 2016 at 13:12

Thanks again dl. I think I have decided for surgery due to my age and it also allows radiation or hifu should it be necessary. I believe my tumour is contained though maybe not enough to save the nerve that side. That's why I have spent two months researching all options and seeing consultants for all options, and at several hospitals. The surgeon I have chosen offers pathology during the op to check margins so he can decide on nerves etc while he's in there. I was going to have to wait 9 weeks but a cancellation for 3 weeks has come up. I am exhausted by the process! He has also suggested a bone scan just to be certain tho I believe there's very low risk, but of course that was not mentioned by my main hospitals as my factors are below their threshold, but now it's doing my head in!!

Cheers, David

User

Posted 20 Apr 2016 at 15:01

The news of a cancellation is brilliant (for you although perhaps not for the person who cancelled :-( )

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

User

Posted 20 Apr 2016 at 15:12

Yes Lyn, it is good news, as the thought now of waiting 9 weeks was awful, especially as you know what I feel about what a delay MIGHT do! Of course it is dependent on a clear bone scan on Monday....

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