11 days out after Radical Prostatectomy

The Stage B was what the urologist initially told me.  Looking at my final pathology report, tumor was listed as T3a and Gleason score was 3 + 4= 7  

Doctor ordered a bone scan prior to surgery along with a CT scan and all came back clear.  

Proportion of prostate involved by tumor = 20%

Under Addiitonal Pathologic Findings: High-Grade prostatic intraepithelial neoplasia

While I have made my decision, so any discussion about other treatments are not on the table for me at this time, it is encouraging to hear that after 4 months to a year, many men have limited leakage and have found urinary control for the most part.  

Ok I now better understand.

With T3a is likely that you may need additional (also called adjuvant) therapy in case it is believed the cancer has spread.

If I were you I would monitor the PSA post op. If it is nowhere near zero and climbs then I would strongly consider such surgery, even if the new scans come back clear.

Please understand that a scan does not pick up every cancer on the skeleton, but only cancer that has spread in a big way. A small spread to the bone will not appear on the scans.

Hi Garry,

Yes mate, You would need a VERY good reason to use it. My sister asked me to do some research into decapeptyl...Bloody terrible stuff. Many forums have terrible stories about decapeptyl. It seems once you have it in your system, you may never recover all your hormone systems as you knew them. It takes several weeks for the drug to really kick in as you lose the various hormones, and no going back. As my 55 year old sister had a terrible time with chemo(heart attacks, all her teeth fell out, damaged heart valve as well as electrical issues, toe nails may never come back, permanent pins and needles in her feet and hands...all in all she would not live through decapeptyl. They just found more cancer in her other breast. She said no more, let it take its course.

Hi geoff.

,thanks for your reply,yes thehorror stories are indeed true,i am finding out to my cost.I was not told whar the jab was nor what it would do to me?

I am left wondering about any further jabs of this potion or if possible to just go with the radiotherapy?I know the docs will not be pleased but to have to feel like this is impossible to bear but i shall be asking questions, Ihave read that you may never get back to how you were that is very frightening.

Yes i have read about other peoples experience on this stuff and it makes awful reading women as well as men, women use it for endo.

Thanks geoff Garry.

Hi geoff, 

sorry to read about your sister was she also on decapepty?If so those are horrendous side effects,i do not blame her for giving it up.

All my best to you both garry. 

No garry, I convinced her, though that did not take too much considering the issues she is having "just" from the chemo, that using decapepty would in all probability kill her.

Living is about quality of life. The two chemo she was put on was the strongest they had, and her next several years, should she survive, look kind of bleak. Some times, the cure is worse that the cancer.

I agree with your statement that "living is about quality of life".

What is the point of "living" for years if one doesn't enjoy those years at all?

Yes Barney, I recall when she was first diagnosed and I said, with no knowledge what so ever about chemo, you have to go on chemo and everything the doctors recommend. Now, a year on, I realise it is super important for people to arm themselves with knowledge BEFORE taking any action. If she had believed the surgeon and pathologist, who did the surgery and pathologist work, she would be a very fit and well individual now, better able to fight any cancer that popped up. Maybe a bit(lot) of trepidation about 3 monthly PET scans, and she would have been well enough to have fought a cancer.

To deliberately poison your system as a prevention in case some cells got loose and they may cause a cancer is crazy.

 

It has certainly made me more resistant to treatment for my 'suspected' prostate cancer until I am convinced I have it AND it needs actively treating. At 67, it means every year older, I need to worry less.  

Your attitude is correct I believe. With any treatment offered I ask a simple question: "what is the upside and downside of such treatment"?

There better be a worthwhile trade off between the treatment and life extension or improved quality of life to make me go ahead with a proposed treatment.

I also sleep better at night knowing there are some treatments that may be offere to me in the future which I have made clear I will reject, because it doesn't pass the trade off test in my eyes.

I agree with you and Barney,quality of life is very important.I was already depressed before decapeptyl and on seroxat,now i feel worse as decapeptyl causes depression as well never told about this had to find out for myself.What stage is your suspected prostate at geoff?If i were you i would try to hang in without radical treatment but that is of course up to you,all treatments have side effects.I have a whisky at night and try to keep things normal if i give things up i feel i have lost the battle,but i cannot drink when radiotherapy starts .

best to you and your sister garry.

As a matter of fact I have.

Had robotic surgery last sept.

psa didn't fall as expected.

cancer found in one place on a bone.

had radiation two weeks ago.

three sessions of high dose.

zero side effects. So much so that I wonder if they really radiated me.

before you have radiation make sure the oncologist can see clearly in ten scan where he thinks the PCa is. After all, if he can't see on the scan, just what is he radiating?

Very important as well is to establish if the is PCa in one or multiple spots in the body.

one more thing. If the PSA doesn't fall as expected post op then it is likely but not certain that PCa has escaped the prostate.

If the physicians suspect it escaped but it can't be seen on the scan then I would think a systemic solution like hormone therapy makes more sense than radiating blindly.

Sort of sounds like the frying pan to the fire...Hormone therapy can have terrible side effects. But you have limited choices, as you can't simply radiate "somewhere" but need a very specific target. The hormone therapy should slow the PCa down, hopefully while thinking of another plan of attack.

Sorry to hear Barney, that the PCa escaped and set up home in one of your bones. Have you asked your doctor if there are any trials about the place that may help?

I have not asked about clinical trials. I assume you refer to trials of medication eg hormone therapy? Do you have any suggestions in that regard?

I am to retest the PSA in a month and if it falls, then all will be well until it rises again. 

The he urologist was very much gobsmacked that the PSA found a home in a bone when the post op pathology showed CLEAR nodes and CLEAR margins. 

Hi barney, No specific ideas about trials, but often the doctors know of such trials that may benefit you. Maybe you are in a stage when PSA momentarily rises then falls again... 

If the PCa was diagnosed as contained, and the post pathology confirmed no PCa involvement outside that of the prostate, how did the PCa get into your blood stream???

Maybe the PCa had its own blood supply network, though you would think, the pathology would find this.

When the prostate is being removed, I have often wondered how the prostate's blood supply network is isolated so no leakage occurs.

Then you get the old potential problem of biopsy wounds tracking the PCa into the main blood stream. I have always thought this was a possible issue.

Anyway barney, I hope the resultant PSA test shows a reduction. While hormone therapy can have problems, some find it no problem at all. I hope you are the latter. 

Thanks for the reply.

In reply to your question asking how the PCa got into the bloodstream, the post op pathology mentioned PNI or peri neural invasion, which my urologist says CAN result in PCa spreading beyond the prostate even when ALL other indicators are good.

This is quite rare, but can happen.

 

I am scheduled to see the radiation oncologist tomorrow, and will begin the first loading dose of hormone therapy.  Urologist believes nano PCa cells have escaped the encapsulation but have not attached to anything yet.  

I'll know more about possible radiation treatment (starting a month from now) tomorrow.  

If the belief is that PCa escaped the prostate but has not attached itself to anything, then I agree hormone therapy may be advised.

You must track your post op PSA over time. Is it rising and if so at what speed?

The questions you must ask of the oncologist or urologist are:

What are my treatment options now? 

What are the pros and cons of the above?

If radiation is advised, which is it? EBRT or SBRT? The latter is more targeted and often has only a few sessions of high doses. This is what I just had.

If hormone therapy is recommended ASAP, regardless of whether it continues for some time or is replaced soon with radiation, what is the risk of delaying hormone treatment?

Can I safely delay hormone treatment until the PCa beyond the prostate is visible on a scan and opt for radiation in place of hormone therapy?