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Re: My Case - Worried

Thanks
So can I presume that a negative bone scan and MRI before surgery won't make a difference. Not sure I understand all this.
Rene

Re: My Case - Worried

Rene,

The scans are not absolutely reliable. They have a fairly high percentage of false positives (where they identify tumours that do not exist)and false negatives (where they fail to identify tumours that do exist)- this latter being particularly true if the tumours are very small. So your scans may or may not be of great value.


As has been suggested you should consult a medical oncologist who will freview all the evidence that has been collected to help you decided what, if any, action is best for you.

The pointer to action in your case is the fact that you have a PSA level after surgery. As I said in my first response, there are sometimes good reasons for a positive PSA but with your specific diagnsosis and in particuar the Gleason Score of 9 there is a greater likelihood that the PSA will be related to PCa - and some cells that are either in the prostate bed, or elsewhere in your body.

If there was a certainty that the cells generating the PSA were cancer cells in the prostate bed, then radiaiton treatment mght be the most appropriate salvage therapy. If there was a chance that the cells were elsewhere in the body, either as a systemic disease (where they had not yet taken hold and started to grow) or as a metastasised disease - where tumours had started to grow elsewhere in your body, then a treatment such as ADT (Androgen Deprivaiton Therapy) might be a better option.

Hope this helps some, but please ask if it doesn't.

Re: My Case - Worried

Rene, I think the key is that the MRI and bone scan are helpful prior to surgery. If they had shown a bad result then most likely the surgery would not have been undertaken. However, as with most testing, their sensitivity is not so great as to detect extremely small incipient problems. So you cannot confidently infer from them that there are no prostate cancer cells in the areas that were scanned.

Keep learning and you'll make good decisions.

Re: My Case - Worried

Rene,
Here is a reputable site that can give you the odds of what will happen:

http://www.mskcc.org/applications/nomograms/prostate/SalvageRadiationTherapy.aspx
(this is the Sloan Kettering site)
I ran your case and you have a 65% chance of not having your PSA go up for 6 years after being treated with a combination of hormone and radiation treatment. You want this "combo" treatment for sure with at least 6 months of hormone treatment. Nobody knows if more months of hormones treatment is better or not.

The fact that they took your prostate out is very positive. Almost nobody dies (less than about 3%) with advanced prostate cancer for at least ten years that get their prostate out. Throw in 3-10 years of hormone treatment after your PSA does go up and your good for at least 10 years plus at least 2 or 3 more with experimental treatments and that assumes no better treatments come out in the next 10 years. Just make sure that the doctors you are working with do a lot of prostate cancer and preferably at a prostate center. I am in just about the same situation but with a gleason score of 4 & 3.

The only really bad situations with prostate cancer are if you go in with bone pain already which is why you got the bone scan or it turns into a really aggresive cancer which can happen to anyone at any time.

Re: My Case - Worried

Thank you

I’ve got a much better understanding of things now.

I’m feeling a bit down at the moment (not sleeping well, no appetite, no energy to do the most simple things etc.). I guess it’s a form of depression so how do you guys cope with it/get out of it?

Rene

Re: My Case - Worried

The fact that you are depressed at times is normal; your life will be different than you imagined. Join a prostate support group. You'll feel a whole lot better. My prostate support group looks more like an older mens running club than people with cancer.

I like to think that my life expectancy has actually gone up; you seldom get two different cancers and I am lucky to have got prostate cancer and not the type that killed my friend in less than 8 months.

Re: My Case - Worried

"The fact that they took your prostate out is very Almost nobody dies (less than about 3%) with advanced prostate cancer for at least ten years that get their prostate out".
Frank where did the above information come from, I don't think I have seen ten years survival rate mentioned after prostate removed

Re: My Case - Worried

Reference of papers:

European Urology Suppl 2008; 7(3):102 Article # 126
"Outcomes For Clinical T3B Prostate Cancer: A Single Institution Experience.

I reread the paper and the formatting on the titles had slipped so that the 10 year was over the 5 year data.

Cancer specific survival for T3B was actually:
96.7 % for 5 years
83.9 % for 10 years
after a prostatectomy and various salvage treatments.

This is also for cases starting in 1987. More recent cases should have a lot better outcome so I would probably stick to my 97% number for someone diagnosed in the last year or so since you can get an extra 18 months with some of the recent chemo drugs and a bit more time with some experimental treatments.

There is another paper with more recent data that I will post if I can find it that came to the conclusion that I will paraphrase as "if in doubt take it out". I feel that all surgeons should just remove what they can if you are already open on the operating table and that is what you want.

Re: My Case - Worried

The below is a Mayo Clinic report of clinical T3 followed by surgery. Most patients were treated in early 90's and ten year survival from cancer was 90%; 15 year 79%.
More recent patients would expect greater survival, much more recent patients, much greater survival.

Radical prostatectomy for clinically advanced (cT3) prostate cancer since the advent of prostate-specific antigen testing: 15-year outcome.

Ward JF, Slezak JM, Blute ML, Bergstralh EJ, Zincke H.

Re: My Case - Worried

Tarhoosier,
Thanks for finding that reference. These numbers give me a lot more optimistic outlook with my T3B case. All we need is one more significant treatment for advanced PC in the next 10 years (almost certain to happen) and I won't have to worry about it shortening my life.

Re: My Case - Worried

This is getting very interesting.
Thanks to everyone that has responded so far.
Rene

Re: My Case - Worried

Note that the study mentioned above was for men diagnosed with clinical T3 cancer. That is, before surgery they were known to have spread out of the organ. Such men often are pushed to radiation since cure by scalpel is so much less likely. Is it possible that men with pathological found spread after surgery (pT3) might do better then these brothers who in essence had a debulking surgery?

Re: My Case - Worried

Hi there
Just had my second PSA after surgery (2.5 month) and it's up to 0.21.
First one 6 weeks after surgery was 0.16
Any comments?
Cheers
Rene

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