Pre Radical Prostatectomy Worries.

User

Posted 21 Mar 2017 at 23:03

Hi posting this new thread after my first thread has went cold somewhat (feeling a bit sorry for myself I suppose) - This as I await Radical Prostatectomy on the 03rd of April.

I am 51 and was disgnosed in February after biopsy with low PSA of 5.9 but Gleason 9 (4+5) and told I have a aggresive, high risk, high grade strain. Understand cancer is confined to one side of prostrate with 78% population. My bone scans were clear and my MRI was inconclusive as cancer could not be seen, so biopsy was revisted to further confirm Gleason 9.

I do not qualify for Brachytherapy due to high grade G9 so have opted for the RP surgery. My worry still being that the surgeon has said he will have to "dig deep" on the side with 78% population high grade and that I should expect problems with ED and incontinence. I understand nerve bundles will survive on one side but still worried about what I will be left with.

My other concern comes from the inconclusive MRI and the gleason 9 rating, as I understand that not many Gleason 9's achieve full remmision. I cant help thinking that the cancer is beyond the capsule and undetected and have been told that I will not get the full picture until they get in there and then get everything to the pathologist?

How long do the pathology results take after RP?

When will I have my 1st PSA test after RP?

What PSA level shows cancer is still there after RP?

Appreciate any advice or comments.

Thanks

Tony.

User

Posted 22 Mar 2017 at 00:29

Hi Tony,
it seems you are taking a gamble but honestly what choice do you have but to go for it and hope that it works? You could go for RT/HT but there is no guarantee that will get you to full remission either. It seems you have a cancer like my OH's - significant in size but doesn't show on the scan.

The first PSA test will be done just before your post-op appointment which is usually 6 weeks after the operation. You will get your pathology results at the same appointment although some surgeons will phone you as soon as they know - we had a call around 2 weeks after the RP and then were given the full report when we saw the surgeon. Ideally your first PSA (and all subsequent PSA results) needs to be below 0.1 - if it is at 0.2 or above then the RP did not get it all and adjuvant RT would probably be offered.

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

User

Posted 22 Mar 2017 at 00:49

Hi Tony,

I'm not an expert regarding a prostatectomy as I was given no choice, I was only offered RT/HT, but I just wanted to wish you luck for your op at the start of April. I hope everything works out for you.

Take care.

Steve

User

Posted 22 Mar 2017 at 07:27

Good morning Tony

Lyn is right (a usual!). I guess the information sharing from the urology department varies from place to place, though it seems the six week meeting is the norm.

If it helps, we seem to be in a very similar situation (G4+5). I had RP in January, and the PSA came back as 0.084 at 6 weeks. So not as low as wished for, but still below 0.1. All the medicos involved with me all seem to have reached consensus that due to the high grade of the cancer that I move straight on to HT and RT. Not really the lifestyle I would have chosen, but I prefer they throw the kitchen sink at it rather than not. It seems it will be the long haul before I find out about any remission, but I do know that HT and RT are not the final options - there are many more lines of attack available over the coming years.

Keep well, and keep fit!

cheers
G

User

Posted 22 Mar 2017 at 07:53

Wishing you good luck. You may want to read my profile. My cancer was extremely difficult to find but a racing PSA up to 43 and a biopsy came back at G8. After surgery my psa was 1.5 then 2.4 and they discovered it was G9 aggressive with spread already to 5 lymphs and positive margins on my bladder. I've rejected RT twice as they believe I have further advanced spread and I want to see the full picture before I let them damage me more down there wit radiation after just getting over the op 21 months on. But you doing the sensible thing

User

Posted 22 Mar 2017 at 09:59

Hi Tony,

I was Gleason 9. My MRI scan showed nothing outside the prostate and my pathology results showed that there was no cancer cells found in the adjacent tissue samples (lymph nodes). I get my post op PSA results next week.

I don't know why but it seems clear from what I have read on here that Gleason 9 score does not by itself mean that it has spread.

User

Posted 27 Mar 2017 at 09:44

Hi Tony

All the best for 3rd. I think I replied prev.

Perfectly natural to worry, it does I feel get easier as treatment milestones are meet. Have a look at my profile. My brother is unifocal and has decided on RT

Surgeon also tend to use their own language that can feel quite blunt and detached. . In your case .. dig deep. Will be to ensure clear margins can be achieved if possible. As explained to me the prostate although they talk about a 'capsule' membrane is not that delineated. My surgeon was very good explaining pre surgery in easy to understand terms to my wife and myself. He even rang up my wife as I was in recovery. This was NHS. Excellent service. Post surgery about 6 weeks will be or should be your key debrief.. take someone along. At that stage PSA will be known and full report of findings from op. I was surprised and wife quite shocked that mine had just started to breech capsule. . We are all different. Mutant cells tend to track nerve bundles I was told. I had non nerve sparing. . I had very low volume cancer cells however spread throughout prostate. . Again current research it seems doesnt know exactly if there is a 'main' tumour or cells mutant independently. . I assume you know they will always remove the whole gland .irrespective of position of lesion. You will be given a discharge summary from hospital. The key is how much involvement you have with GP. In my case zero post op. I had a pelvic lymphadenectomy. Again no idea if this is standard practice or not with da vinci. Or my surgeons preference. My pre op understanding that these would be sampled.. again I don't have exact understanding what was actually removed or planned to be removed. All the best.. Gordon

Edited by member 27 Mar 2017 at 10:15 | Reason: Not specified

User

Posted 27 Mar 2017 at 10:45

Tony

I'm 46, so a bit younger than you. Had my prostatectomy in December. I'm now completely pad free. I had non nerve sparing, so ED is a curse. If they can spare one bundle for you, that will be a good thing. In the end though, I told my urologist my priority was getting rid of the cancer. Before surgery, I was Gleason 7 but afterwards was upgraded to Gleason 9.

I was offered radiotherapy in February but my oncologist said she thought I should wait as my first PSA result was 0.014. Last week, it was 0.015. She still recommends waiting, although had I insisted, she would have arranged radiotherapy. I still don't know if I've made the right decision to wait, but I've made my decision and should live with it. I notice GrahamT's hospital seems to have taken the opposite approach with him.

I found the catheter the worst part of the surgery, and of course the resultant ED. But if one bundle is spared, with a bit of luck you'll be up and at it fairly soon after surgery.

Ulsterman

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User

Posted 22 Mar 2017 at 00:29

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

User

Posted 22 Mar 2017 at 00:49

Hi Tony,

Take care.

Steve

User

Posted 22 Mar 2017 at 07:27

Good morning Tony

Lyn is right (a usual!). I guess the information sharing from the urology department varies from place to place, though it seems the six week meeting is the norm.

Keep well, and keep fit!

cheers
G

User

Posted 22 Mar 2017 at 07:53

User

Posted 22 Mar 2017 at 09:59

Hi Tony,

I don't know why but it seems clear from what I have read on here that Gleason 9 score does not by itself mean that it has spread.

User

Posted 22 Mar 2017 at 17:51

No G9 does not mean it has already spread but it is much more persistent which dramatically reduces the chance of achieving full remission.

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

User

Posted 27 Mar 2017 at 06:28

Apologies as somehow missed all these responses when posted - no email notification.

Many thanks again for all the support and info which is greatly appreciated.

I have asked for a meeting with my Oncologist which has now been arranged for two days time, as I was not offered this after advised to go with Surgery. I know I dont qualify for any form of Brachyatherapy but have to explore all options and discuss potential RT options as the clock is ticking on the RP date of 03rd of April.

My head is all over the place at present, although I have resigned myself to surgery being the best option - the last 8 weeks since diagnosis has been a nightmare.

User

Posted 27 Mar 2017 at 09:44

Hi Tony

All the best for 3rd. I think I replied prev.

Perfectly natural to worry, it does I feel get easier as treatment milestones are meet. Have a look at my profile. My brother is unifocal and has decided on RT

Edited by member 27 Mar 2017 at 10:15 | Reason: Not specified

User

Posted 27 Mar 2017 at 10:45

Tony

I found the catheter the worst part of the surgery, and of course the resultant ED. But if one bundle is spared, with a bit of luck you'll be up and at it fairly soon after surgery.

Ulsterman

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