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My Case - Worried

I'm a bit worried so I want your opinions on this: Went for robotic surgery in the beginning of December 09 (my PSA had risen to 6.3 from 4.2 in two month). Here is the result from the report:
"The tumour represents a peripheral zone carcinoma consistent with Gleason Grade 4+5=9. The tumour is associated with widespread intraductal carcinoma. The tumour is no longer prostate confined and extension through the capsule is noted posteriorly on the Lt. with extensive extraprostatic spread. The tumour does not extend to circumferential margins. Furthermore, there is invasion into the base of the LT. seminal vesicle".
Before surgery I was staged T2c and I'm now T3b.
Lymphnodes only showing reactive changes.
I guess the only positive thing so far is the negative margins!? Tumour volume 7.87 cc.
Had my first PSA six weeks after surgery and it was 0.16.
That worries me, any idea why?
I have now been referred to a radiologist.
Would appreciate your opinion.
Rene

Re: My Case - Worried

Sorry to be the bearer of bad news Rene, but those data indicate a high possibility of systemic disease, which is to say the disease may be in other parts of your body but may not yet have metastasised. Although a detectable PSA after surgery may be due to a number of causes, in your case it seems likely that it may be due to some cancer cells that have escaped the surgery.

In those circumstances it might be very much in your interests to see an oncologist as well as the radiologist you are seeing. The radiologist will almost certainly recommend radiating the prostate bed, but the oncologist may feel that a systemic treatment - ADT - may be more appropriate.

It is unfortunate that PCa is the only cancer where oncologists are not consulted as a matter of course - yet they have the expertise in dealing with cancer, which is the main problem faced by the man. Urologists on the other hand, while having a working knowledge of PCa specialise in surgical focuses on the urinary tracts of males and females, and on the reproductive system of males.

Good luck - keep moving on this one.

Terry in Australia

Re: My Case - Worried

Thanks for your feedback Terry.
I forgot to add that I had a bone scan and a MRI of the pelvic area before surgery and they were both negative.
Does that change anything?
Rene

Re: My Case - Worried

Rene,

Sorry to hear about your situation-it is very similar to mine. You seem to be in a high risk category if you look at the nomograms. There are a number of clinical trials out there that you may want to look into.
In my situation I elected to go after it very agressively in the hope that if there is any cancer left that it is better to attack it while it was smaller rather than larger. You can see my case on YANA. I had the full range of treatment-surgery, hormones, radiation and chemo. Current psa is zero but only time will tell as a Gleason 9 is a slippery devil. At least I know that I gave it a good shot.

Feel free to contact me if you would like more information. Best of luck to you.

Re: My Case - Worried

René:
As a fellow G9 I think your previous advice above is relevant to your particular case. You will need to be vigilant and guided with wisdom. I hope you can find the best oncologist to assist you with this journey. An intelligent physician accomplished in prostate cancer will tell you that you have many years to go. NO ONE can say what your future will bring, beyond what I stated above. Radiation and hormone therapy can buy significant time and there are interesting things just about to pull into the station. You are here to seek information. Keep that attitude and you will do well.
The pathology from surgery is packed with information and trumps scans.

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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