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Diagnosed x2 weeks ago...request opinions

Dennie1953
Posts: 3
Joined: May 2018

Hello:
I've bren reading this forum for a couple of weeks and am very impressed with the information that I'm seeing.

My GP was concerned about my 1 year rise in PSA (from 1.98 06/2017 to 3.37 03/2018) and arranged an appointment with a urologist. The urologist did a DRE and located a nodule on my prostate. One week later they did a prostate biopsy. Urologist called on 05/18 and informed me that I had PC (Gleason 8). I requested that they get a second opinion on the slides from Johns Hopkins and am waiting for them to send the slides for review. The urologist is scheduling MRI/CAT/Bone scans to check to see if the PC has moved out of the prostate. He doesn't believe it has due to my low PSA.

Below are the results of my biopsy:

Biopsy Report Results
64 YO at time of DX (5/2018) PSAV: (06/17) 1.98  (09/17) 2.05 (03/18) 3.37
Initial DRE (05/18) revealed nodule on prostate, referred for BX. Results:
R. Apex biopsy: Benign Prostatic Tissue
R. Mid biopsy: Benign Prostatic Tissue
R. Base biopsy: High grade prostatic intraepithelial neoplasia (HGPIN)
R. Lateral apex biopsy: Benign Prostatic Tissue
R. Lateral mid biopsy: Benign Prostatic Tissue
R. Lateral base biopsy: Benign Prostatic Tissue
L.  Apex biopsy: ADENOCARCINOMA Gleason 8 (4+4) 9mm involving 100% of the biopsy. Gleason Grade: Group 4
L.  Mid biopsy: ADENOCARCINOMA Gleason 8 (4+4) 11MM involving 100% of the biopsy. Gleason Grade: Group 4.
L Base biopsy: High grade prostatic intraepithelial neoplasia (HGPIN)
L. Lateral Apex biopsy: Benign stoma.
L. Lateral Mid biopsy: ADENOCARCINOMA Gleason 8 (4+4) 6mm involving 60% of the biopsy. Gleason Grade: Group 4
L. Lateral Base biopsy: Benign Prostatic Tissue.
PVOL: 58ml / PSAD: 0.06 / PSA: 3.37

 

Needless to say, I'm scared as heck but I've had two weeks to read and become better informed. Now just trying to figure out my next steps based on the upcoming test results.

Thank you for any assistance/opinions that you might be a able to provide.

Regards,

Dennie (US Army, Ret.)

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Dennie,

Welcome to the board. The Gleason 8 is not good news but the biopsy found cancer at the same area that could mean a solid tumor. This also could be the area felt by the urologist during the DRE. In any case, the bump increases the risk for extraprostatic extensions which you need to consider seriously in your decisions. The PSA of 3.37 ng/ml is high for 64 years old. I wonder if you have BPH in the mixture. Do you have any symptom related to urination issues or erectile disfunctioning?
The doubling time close to 9 months is also short and places you in the risky group of aggressive case. They consider PSA-DT above 14 months as midterm. Best is over 24 months. Let's hope for true positive images so that you can plan your next step.

Solid tumors are easier for treating with directional radiation that would cover the tissues close and around the bump. If the case is contained then surgery could provide you with peace of mind dissecting the whole tumor. I recommend you to research on treatments side effects so that you can better chose what you like. Mean while you can plan in obtaining additional information regarding bone health (DEXA scan) and cardiovascular health. These are all important issues in the event of a major therapy and continuous care if needed.

Survivors in this forum will try helping you to understand the facts. Let us know the exam results and your doubts.

Best wishes and luck.

VGama

Dennie1953
Posts: 3
Joined: May 2018

Thank you very much VascodaGama for your input.

Needless to say, I am very concrned and it seems like I may be "over-educating" myself to becoming an obsession. There seems to be so many "maybe's" and possible options and treatments that it can be mind boggling.

I look forward to hearing what other members of the forum also have to say. I think I neee to step back a few and take a deep breath. It just seems like it's taking forever to get ANYTHING done. I'm not a patient person, especially when it comes to something this serious.

I have had issues with restricted pressure during urination. My doctor gave me antibiotics and it seemed to help somewhat..but it seems to be back again. Not sure if this is due to the BPH or the prostate itself. There have also been erectile issues for a while now.

Thank you again, very much.

Regards,

Dennie

Clevelandguy
Posts: 460
Joined: Jun 2015

Hi,

Sounds like to me that you need to wait just a bit longer to get the test results of your scans to see if the PC has escaped the Prostate.  If its totally contained, then surgery could do the trick or if it has escaped then maybe radiation is a better bet.

Dave 3+4 

Grinder
Posts: 441
Joined: Mar 2017

Hi Dennie

Just wondering... using the term "antibiotics" is a widely general term... Were you given a fluoroquinolone such as Ciprofloxacin (2nd generation)... Levaquin (3rd generatjon)... Moxifloxacin (4th generation)? Or Septra/Bactrium? Ampicillin?

Did your doctor take a urine culture to determine which pathogen infected your prostate?

Is he just shooting in the dark with Ciprofloxacin?

Just my opinion based on my own experience, but some pathogens are nore virulent than others, and wont be eradicated by Cipro. Staphylococcus for example, is a very stubborn pathogen under any circumstance, but even moreso in the hard to access and rarely used gland, the prostate. 

Btw... if it was cipro, sometimes the pharmacist doesn't tell you that ALL dairy is forbidden because it counteracts and makes cipro ineffective as an antibiotic, which might explain why it was on again off again. I learned that the hard way the first time it was prescribed for me.

Depending on the pathogen, if it is not eradicated by antibiotic treatment, and it sounds like it was not, you may want to consider that in your treatment for PC as well. For example, robotic prostatectomy to remove the infected gland... or Cyberknife (stereotactic body radiation therapy)  to destroy the infection, gland and all. I had mine removed, it was the most effective way of treating the Staph infection permanently.

At your age I am guessing there is no thought of preserving the function of the gland to sire children, so you certainly want a treatment that will eradicate the whole gland. That will kill all  three birds, PC and Prostatitis and BPH, with one stone. Very likely, also, with your Gleason scores, they were going to treat the whole gland anyway. But I thought I would mention it to be safe.

Dennie1953
Posts: 3
Joined: May 2018

Grinder: Thank you for your input on the situation.

I believe that the Dr. gave me Cipro for the BPH and it don't think he did a urine culture (it's been a while ago).

I need to get a copy of the records from my Dr. for that time and see what was prescribed and what was determined (if anything).

I want the tests soon so I can plan something based on those results.

Thank you again!!

Dennie

SantaZia
Posts: 64
Joined: Apr 2018

Dennie it seems like you are doing the right thing waiting for your test results. There may be more genetic testing you want to do to determine how agressive your PC is. There are a ton of options for that, the PTEN is a cheap screenig and the Prolaris provides some good information too. I had both. One thing that you might want to consider as you continue your research is to discuss with your oncologists starting hormones, especially if no infection is found.  It appears it will be something that you will need to do anyway and it might reduce the size of your prostate and your PSA. It was recommended to me by my urologist, the four other consulting urologists and oncologist.  I have intermediate PC 3+4 or 4+3 <15% with at 1.8 contained tumor. Yet, this qualified me for the 6 month hormone treatment 3 months shot of Lupron and 50 mg Bicalutamide which I started when I visited MD Anderson Proton center.  It doesn't commit you to any one treatment and it is generally needed before treatment can begin. There are a number of side effects including hot flashes, weight gain and lack of interest in sex. I have only been on it for 12 days but I have upped my exercise (running and resistance) and kept my sexual life going. I get too focused on the disease too and need to remind myself stop the reseach, exercise, read fiction work outside and watch some soccer. Good Luck!

Regulator
Posts: 42
Joined: May 2018

Dennie,

The timing of your post is rather fortuitous, because I too have been recently diagnosed, with some downright scary numbers (super-high PSA of 69, rapid PSA doubling time of 2-3 months, and a Gleason score of 9), which are inarguably a bit worse than your own numbers, and because of that, I'm perhaps a bit ahead of you in terms of the raections and follow-up visits and treatment decisions. That said, there are innumerable people here on the ACS Forum that are far more qualified and have far more expertise than me. However, those folks notwithstanding, I believe that some of what I can share with you may in-fact be helpful, and maybe even encouraging to some degree.

So, here we go . . .

Firstly, the fact that you've caught your PSA this early, and the fact that the number of positive cores was minimal, are two "great" things in my view. I would strongly suspect that the low/lower PSA reading in your case, and the fact that you have distinct nodularity, makes it highly unlikely that the cancer has spread to any significant extent. In other words, it would appear to be "localized" which will become a critical factor in your treatment options (and decisions) moving forward, and I hope that others will agree with me on that point.

Secondly, its great that your urologist has ordered some immediate diagnostic imaging (MRI, CT and bone scans), but I would caution you on how useful these tests may prove to be. I too had a CT Scan and a bone scan, and I can now tell you without hesitation that at least in my case, they were essentially 'pointless' exrecises. I say this because my own CT and bone scans both came back "negative", which I falsely assumed meant "good news", but I was subsequently informed by my urologist that both tests produce far too many "false negative" results to allow for any confidence in terms of a definitively "negative" diagnosis. Worded somewhat differently, you could have a negative CT scan and a negative bone scan, and still have low-grade 'positive' spread of the disease to other organs, tissues, and/or bone. Accordingly, I would strongly suggest (as others here have suggested to me), that you run (not walk) to get a high-resolution 3T-MRI with/without contrast (not the standard, low-resolution, 2T-MRI), as soon as practical. Given my own experience in this regard, and given your own insurance particulars, I suspect that you might meet with some resistance in getting your physician(s) to order one, because the test is rather expensive (and insurance companies often don't like to authorize them), but also, because your PSA numbers are not yet (and hopefully never will be!),super-elevated, which seems to lead some urologists/oncologists to hold-off or postpone such imaging. However, I would suggest that you strongly-forcibly "insist" on this 3T high-resolution imaging, because the results will be invaluable in identifying all sorts of critical information that is absent from your equation at this early stage, such as the 'accurate' size and weight of the prostate, size, location and characteristics of the nodule, whether there is any involvement outside the prostate gland itself, like the seminal vesicles, pelvis, bladder, etc.

And thirdly, I would encourage you to try and avoid the natural over-reacting that we often do over your initial Gleason scores, particularly the "highest" Gleason score (GS-8 in your case). The initial pathology report from my one and only prostate biopsy rated a single one of the 5 'positive' (out of 12 total) cores as Gleason 5+4=9. However, I have subsequently consulted with another (unrelated) oncology group, who requested to receive and review those initial pathology slides, and that secondary oncology group's pathologist's report "down-graded" my Gleason of 5+4=9 to 4+4=8, which may seem on its face as an insignificant change, but is apparentll a 'huge' difference in the opinion of most oncologists. Moreover, there are a number of reports and articles (including peer-reviewed scientific journal articles), to indicate that after physically observing and removing the prostate of various patients, surgeons occasionally down-grade the patient's Gleason score from its higher initial value.

Lastly, the reported volume of your prostate (58 cc) is perhaps a teenie bit large (depending on your own body size and weight), but its hardly abnormal for your age (64). It is my understanding that minor swelling can occur from a variety of things unrelated to cancer (e.g., BPH, biopsy trauma, etc.). By comparison, I am now 66 years of age, and the most recent and accurate assessment of my own prostate's volume was determined (by 3T-MRI), to be 50 cc, which I'm told is quite typical for a man my age.

So, maybe call your doc . . . make sure the MRI that he ordered is in-fact a 3T-MRI version (not the standard variety 2T type), and then, I suspect you'll both be in a far better position to make the best decisions for you regarding future treatments, moving forward.

Good luck!

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