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Cancer: Prostate Message Board

hmcg7


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Old 07-23-2017, 08:07 AM   #1
hmcg7
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hmcg7

Hi everyone,
Had a biopsy this week and found out I do have cancer with a Gleason score of 7. Can't remember what Dr. said about 3+4 0r 4+3. I will see him on the 31st of July. He seems competent and caring and is willing to discuss things. We will discuss options at this time and I have a million questions. My first time on this board and I would like have anyone give me ideas of what to ask and maybe also their opinion of best treatment. I have had symptoms for 6 months now (rectal and urethral discomfort). Had an MRI in Feb with diagnosis of prostatitis. PSA went from 4.0 to 5.14 in early June. No change in comfort level. Thank you for having such an amazing forum available, never thought I would be here, just another challenge in life.

Last edited by hmcg7; 07-24-2017 at 11:23 AM. Reason: Wrong format msg

 
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Old 07-28-2017, 04:58 PM   #2
IADT3since2000
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Re: hmcg7

I hope you feel welcome to the Board, though doubtless you did not want to have reason to come here, like the rest of us. Here are some thoughts.

A first and very important question is whether the Gleason score was 3+4 (referred to as favorable risk Gleason 7) or 4+3 (unfavorable risk Gleason 7). These days (just the last year or two) doctors are coming to view these situations as quite different, with "active surveillance" (instead of immediate treatment) being increasingly recommended for favorable risk, if other indicators are encouraging, while treatment is routine for unfavorable risk Gleason 7 (unless the patient has some other serious health concerns such that treatment of prostate cancer would likely not add value).

Therefore a second important question is whether you need a second pathology opinion of the biopsy. Often biopsies are done locally by a general pathologist who handles all comers for all kinds of diseases. What we all need is a pathologist who is fairly expert with prostate cancer biopsies. Usually major university hospitals have such experts, and there are pathology companies with specialists in prostate cancer. My own biopsy was upgraded by one of the foremost experts from a GS 3+4=7 to a GS 4+3=7. Upgrading happens more than downgrading, but either is possible, as is confirmation of the original reading.

Would you mind sharing more details, such as the number of biopsy cores taken, and whether the imaging guidance used was TRUS (Trans Rectal UltraSound) or some other, such as multiparametric MRI?

Regarding your symptoms, usually (but not always) prostate cancer is without symptoms such as you describe until it is fairly far advanced. HOWEVER, prostatitis can easily account for such symptoms. I suspect that is the case, but I am no doctor and have had no enrolled medical education. Prostatitis can also easily explain changes in PSA, which can be rapid and sometimes large, due to prostatitis, and even fairly often have a maddening up and then down pattern, sometimes repeated.

Regarding best treatment: if your doctor is a urologist, the odds are high he will recommend surgery; if your doctor is a radiation oncologist, the odds are high he will recommend radiation. These days, research has pretty much proven (repeatedly) that decently done radiation is just as effective as decently done surgery. That was not the case around 2000 and earlier, where surgery had a clear edge. Fortunately, there have been great improvements in technology. It is now a bogus argument that you can get added insurance by holding radiation in reserve in case surgery first fails; radiation first is at least as good.

If there is evidence your cancer is not contained within the prostate capsule (such as multiparametric MRI evidence), then surgery will likely be insufficient; if contained, surgery would be on par with radiation. Radiation can be highly effective at curing not only the cancer within the prostate but also cancer that has spread a bit beyond it. Usually the spread is not that far beyond and well within the effective range of radiation. There are number of kinds of radiation choices, with some emerging as less burdensome time-wise but as effective and safe.

There are also some other therapy options that may be open depending on your case details.

Side effect profiles are somewhat different for each of the therapy options. That can make a difference to you.

Good luck with this.

 
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Old 08-08-2017, 10:54 AM   #3
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Re: hmcg7

After my urologist and I had our post biopsy discussion, I feel that robotic laproscopic surgery is my best option. My Gleason score is 7 (3+4) with two of twelve cores positive. Basically the nodule that the Dr. could feel with the DRE came out positive. Now comes the trip to Phoenix to see the surgeon, which I am also counting as a 2nd opinion. Can anyone think of any pertinent questions to ask him and am I in any position to wait. I do have symptoms (7 months now) though not in terrible pain. Thanks

 
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Old 08-12-2017, 10:14 AM   #4
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Re: hmcg7

Hi again hmcg7,

Ask him how many robotic prostate surgeries he has performed, and how many he does a year. Studies have consistently shown that greater experience leads to better outcomes. You want a surgeon who has at least performed hundreds of these robotic surgeries, and more is better. If he does not perform these surgeries frequently, the research suggests you would be better off seeking a more experienced surgeon, if you have that option, or perhaps reconsidering radiation if you do not.

Ask him about side effects, especially regarding potency and urinary continence. It would probably be helpful to understand both what current research indicates and how his patients do. Patients who understand up front the realistic odds of outcomes of varying burden are more satisfied with outcomes and have less regret of treatment choice, according to research.

The surgeon in Phoenix as a second opinion should be helpful, but you will not be getting opinion from outside the surgery community, and surgeons, naturally, like to “heal with steel”. If you want a broader range of opinion, you could check with a “medical oncologist” or a “radiation oncologist” who is known for treating a lot of prostate cancer patients.

You are in that gray area where more information is often helpful. If you had mild prostate cancer, such as Gleason 6 with typical mild case characteristics, active surveillance is often a wise choice that is easy to make. If you have Gleason 4+3=7 (done or confirmed by an expert pathologist) or higher Gleason cancer, then treatment is needed, and an easy choice. A few years ago, your Gleason 3+4=7 group was also considered to need treatment, but expert opinion is now shifting, and some doctors are advising active surveillance (plus often multiparametric MRI imaging and mild medical/lifestyle tactics) for these patients, especially those with favorable characteristics, such as just two biopsy cores positive. You have symptoms, which suggests greater risk, but which might well be due to infection and not cancer. As a layman, it strikes me that rectal symptoms are quite unusual for prostate cancer that seems to be in a fairly early, confined stage, so it seems that infection is a more likely cause of your pain, but, again, I’ll emphasize that I am a layman with no enrolled medical education.

If it were me, I would not want to defer treatment unless I got advice from a well-regarded doctor that included multiparametric MRI imaging. By the way, use of multiparametric MRI imaging is surging, especially in the past few years. Depending on the equipment used, an uncomfortable endorectal coil is used (General Electric system) or not (Phillips and Seimans). Excellent high resolution images result that reflect anatomy, water diffusion (which is at different rates for cancer and normal tissue), blood flow (which is higher for growing cancer), and sometimes other characteristics. Based on the set of results, radiologists can advise doctors how risky the case is, and doctors have a better idea which treatments will work best. Sometimes genetic testing is also used, but that is still far from common. (For instance, if you are positive for the BRCA-2 gene, or the BRCA-1 and some other genes or missing PTEN, that suggests a riskier case that likely needs more aggressive and earlier intervention.) There is a highly respected carbon-11 (C-11) acetate PET/CT imaging center in Phoenix, one of the very few in the US, but that expensive testing is not usually done for patients in your situation (not yet treated and no evidence of high-risk disease).

Good luck to you! (We can all use some good luck in dealing with prostate cancer.)

Last edited by IADT3since2000; 08-12-2017 at 10:17 AM. Reason: Spacing.

 
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Old 08-21-2017, 10:04 AM   #5
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Re: hmcg7

Quote:
Originally Posted by hmcg7 View Post
After my urologist and I had our post biopsy discussion, I feel that robotic laproscopic surgery is my best option. My Gleason score is 7 (3+4) with two of twelve cores positive. Basically the nodule that the Dr. could feel with the DRE came out positive. Now comes the trip to Phoenix to see the surgeon, which I am also counting as a 2nd opinion. Can anyone think of any pertinent questions to ask him and am I in any position to wait. I do have symptoms (7 months now) though not in terrible pain. Thanks
See my post today. If they get in there and take everything, there is no going back. Get an opinion from a radiologist. not just the surgeon.

 
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Old 09-15-2017, 09:37 AM   #6
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Re: hmcg7

Hi again everyone,
I had robotic laproscopic surgery on the 5th Sept and catheter removed 9 days later. Still tender from (uretha, perineum, incision site) surgery. I am somewhat disappointed from pathology report. Gleason upgraded 3+4 to 4+3 = 7. There was another tumor on posterior side with 10% total involvement for prostate. Sections of bilateral seminal vesicles and bilateral vasa deferentia were negative.Surgeon did not touch any lymph nodes and nerves were spared. Margin
was positive on posterior side only. Surgeon feels the main objective was
accomplished by removal of prostate and issue with margin "could mean nothing". He has ordered ultra sensitive PSA in 3 months with another one 3 months later.
Depending on those results radiation could be an option. I am looking for anybody with a similar experience.

 
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Old 09-15-2017, 01:05 PM   #7
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Re: hmcg7

Hi again hmcg7,

It sounds like you had a pretty good result, though of course not as clear cut as all of us would like. Whatever the outcome, even if you need more therapy, "debulking" the disease by hitting the primary source is a key strategy employed by some of the leading experts, and you have now done that.

As you probably know by now, that Gleason upgrade indicates a somewhat more aggressive tumor, but still not an 8, and that is a key difference!

Being a layman and not a prostate cancer surgeon, I can only relate what I have heard and read about positive margins. It seems that very often they are NOT associated with cancer that has escaped the surgeon’s knife. Frequently patients do fine who have had positive margins. However, it is obviously a sign that there could be further trouble.

I just did a quick search of www.pubmed.gov with the search string “radical prostatectomy AND positive margins “ and a filter set for “abstracts”. That yielded 1,792 hits. If you want to do some homework, that should keep you busy for a while. (Post surgery radiation is mentioned in some of the hits on the first page of results, but you could also add that (" AND radiation " to the search string) or build your own search. By clicking on the blue hypertext, you will see an abstract of the study. You can also link to free complete papers when they are available. Most of the language in the papers is understandable, but there are some statistical abbreviations that are puzzling to many patients. I know what these abbreviations mean, and I would be glad to help where I can.

I’m convinced that radical prostatectomy patients should all be followed up with ultrasensitive PSA tests. Numerous studies have been done, and PSA results of <0.01 and 0.01 are highly favorable to excellent long term outcomes. Results of 0.02 and 0.03 are still not bad but less reassuring, with 0.04 being a yellow caution light, and 0.05 or higher indicating a likely “official” recurrence (when PSA hits 0.2 after surgery) in the not distant future. (I had many ultrasensitive PSAs during four rounds of intermittent hormonal therapy.) On the other hand, sometimes a little healthy tissue is left during the surgery, and that can result in harmless PSA levels that are higher; they should remain stable.

There are tactics you can use to help your cause, such as exercise (when you are ready), a heart/anti-prostate cancer healthy diet, and some mild (for most) and inexpensive medications. You have probably already been advised on what to do to recover from surgery. If romantic life is still important, penile rehabilitation after surgery should start soon after surgery. Some of the key medications are now available in generic versions and are far cheaper than they used to be. A number of good books are available on this rehabilitation.

Good luck!

Last edited by IADT3since2000; 09-15-2017 at 03:03 PM. Reason: Added sentences about help with statistical and other terms.

 
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