Newly Diagnosed

Hello, I have been reading this forum since I had my biopsy and have gained a lot of valuable information - thank you. I'm at a point where I'm not quite sure how to proceed. I will give you a bit of background. My father's father had PCa. My father died at 52 from another cause, so not sure if he did or didn't have it. When I was 45 I was scared to see I had blood in my urine. I was referred to a urologist who did blood tests and a scope up my penis. He said it was prostate infection and I was put on meds. Two years later, I again had some blood in the urine. This time he had me do a Cat Scan or MRI (not sure which). I had dye shot into me and had to drink barium and was placed in the tube. The urologist could not determine where the blood came from and it eventually stopped. I was never told my PSA numbers, but was told they were fine. Fast forward. I am now 57 years old and during routine blood tests by my PCP he was concerned that my PSA was at 4.6. I came in and he did an DRE and said my prostate was enlarged. Then in July he ran another blood test. This time it came back with PSA at 3.6/free at 17%. He said, 'we will watch it.' I decided to go back to my urologist. He did another blood test and DRE. Prostate is enlarged and the PSA came back at 3.8. I asked him to also run at PCA3 urine test - which came back positive. My urologist said to 'watch it.' But then he had me do another PCA3 test - again came back positive (60). My urologist then suggested I have a biopsy. Biopsy was done on Dec. 13(ultrasound guided), results on Dec. 20. Results: 12 cores, 1 positive (1mm) Gleason 3+3=6, left apex. I was referred to the surgeon that works in the same urology group who does the robotic surgery. Dec. 27 I met with him. He was very nice and talked with me for an hour. He didn't push surgery and said that AS was an option. A friend of mine is a nurse locally and she said this surgeon has a good reputation. I live in Fresno, CA, so not a big city per say. I have read online this surgeon's track record, look pretty good. My question: From all I've read, it seems getting the best surgeon is key. I don't wish to do the AS route (I'm a worrier). This surgeon didn't think an MRI was necessary due to the results of the biopsy. Thoughts?

Maybe you do not need a mpmri right now, but be sure to have one included in about one year in your AS procedure. It is only way to be reasonably sure that your biopsy has not missed something more significant.

Steve,
I would follow TA's advice. I think your state of worry will reduce as you continue to learn and get more information about this disease. Surgery for a low volume Gleason 6 guy would be like chasing a fly with a sledge hammer.

Thank you to all have responded thus far. Your input, words of wisdom, and concern are appreciated. Also - Michael-T, your comment about the populations of Fresno and Wyoming made me laugh - the first laugh I've had in a while. Thanks

SteveSR,

If you do plan on AS (and you should give that very serious thought as recommended above), definitely challenge the MRI recommendation from your uro. It is possible that Multiparametric MRI (mpMRI) would find something missed by biopsy. And you want to go into AS with your disease as highly characterized as possible.

Good Luck,
Paul

mpMRI=multiparametric MRI - there are usually 3 parameters they look at: T2, DWI and DCE. Taken together, they can help find areas suspicious for high grade PC (which is the only kind that needs treatment).

3T MRI = 3 Tesla MRI. Tesla is the strength of the MRI's magnetic field. Higher strength gives higher resolution, up to a point. Sometimes an endorectal coil is used with a 1.5 Tesla MRI to get about the same resolution.

I agree with your Uro that an MRI isn't useful right now. Good AS programs involve getting a confirmatory biopsy within a year. But they have to do it in case your first biopsy missed any higher grade cancer. In your case, an mpMRI would probably show nothing, since you do not seem to have any high grade PC. If that's the case, they would probably biopsy randomly anyway, just to increase the confidence they didn't miss anything significant. You have plenty of time for this.

SteveSR -- I was just diagnosed with low-risk, Gleason 6 in August 2017. Please see my stats in my signature.

My advice would be to sit back, take a lot of deep breaths, and talk to a variety of pros -- I talked to a general urologist, surgeon, and an radiation oncologist. Given my stats, all recommended active surveillance (AS).

My first reaction was: "No way, man! We've got to do something now! Let's go!" But after stepping back and letting the emotional side dial back a bit, I started weighing the facts more rationally and scientifically.

I'm taking my AS at a six-month clip. I'm due for a PSA in February 2018 and then a confirmatory biopsy sometime between March and May 2018. If all remains the same and I'm still just a Gleason 6, I'll evaluate my psychological state at that time and decide whether or not to go with treatment or continue on AS. Breaking AS down into shorter time segments has made it more manageable and less stressful and overwhelming to my "head."

Again my thanks for so many responding with great information and support. A question I have: Many have stated that AS is a option at this point with my current diagnosis. However, I also realize that the biopsy can miss tumors. So wouldn't a sooner than later surgery be better due to the fact that the current diagnosis is what the doctor assumes based on the biopsy, but not really known for sure until after the surgery and the prostate is examined for a definite diagnosis. As I've read, many times the Gleason score increased after surgery due to the fact the biopsy didn't catch certain areas of the prostate.

SteveSR-

It's a good question, and the answer explains why active surveillance has such excellent long-term results. There is always (or should be) a confirmatory biopsy within a year. The confirmatory biopsy will be either an mpMRI-targeted biopsy or a template mapping biopsy. Those biopsies are very good at finding any additional cancer missed in the first biopsy or, in the case of the mpMRI-targeted biopsy, at finding significant prostate cancer only.

After the confirmatory biopsy, your PSAs are used to monitor progression (sometimes a DRE too). In addition, there may be follow-up biopsies at certain intervals (depending on what was found previously) or sometimes just follow-up mpMRIs. The odds of missing significant cancer becomes much smaller over time.

If the patient at some point needs treatment (and 55% never do), the treating physician knows exactly what's in there due to the several follow-up biopsies. The kind of prostate cancer you have, called "very low risk" is extremely slow growing, and if it does start to grow, you will have plenty of lead time.

SteveSR said...
Again my thanks for so many responding with great information and support. A question I have: Many have stated that AS is a option at this point with my current diagnosis. However, I also realize that the biopsy can miss tumors. So wouldn't a sooner than later surgery be better due to the fact that the current diagnosis is what the doctor assumes based on the biopsy, but not really known for sure until after the surgery and the prostate is examined for a definite diagnosis. As I've read, many times the Gleason score increased after surgery due to the fact the biopsy didn't catch certain areas of the prostate.

Your argument here is exactly why getting a MPMRI is worth consideration, especially before jumping to surgery as a potential solution. MPMRI uses the PIRADs rating system, and any significant PCa has a high likelihood of being identified via a good MPMRI scan read by a good radiologist experienced with PCa MPMRI scan analysis. It's also worth mentioning that I've also read stories of post surgery pathologies that actually came back with lower grade cancer and less volume of cancer than indicated via biopsy - it goes both ways in other words.

I know one guy who had a GS6 PCa scare at the age of 58 several years ago and went to a local hospital that pushed surgery. He was scheduled for surgery four weeks out. I worked for this man's wife at that time. I recommended before he underwent surgery to head down to Brady Urology at John's Hopkins (the highest rated Uro program in the U.S.), and see Dr Partin. They went down, underwent a targeted MRI biopsy, and a week later were told no surgery was necessary and that he was an excellent candidate for AS based upon all medical evidence at hand. That was eight years ago, he is 66 now, and the last two biopsies the past two years - came back with zero positive cores. His PSA is down from the 5's to the 3's and is holding stable. He is now undergoing annual MPMRI scans as part of the AS program and will only undergo additional biopsies on an annual basis if his PSA rises beyond threshold, and/or if the MPMRI scans indicate changes when compared to his previous scan data. Granted, this is just one anecdotal example, so take if for what you will, but I always recommend caution for someone in your shoes that is considering a major surgery with potentially significant life-altering side effects that could last for the rest of your life, especially if it wasn't really necessary from an evidence based medical standpoint.

Of course you have to come to your own decision just like everyone else, but as everyone else here has said or alluded to, you most likely have years before you face any actual treatment decision, and are just as likely not to ever have to actually undergo any treatment at all, at least based upon the data you have shared with us to date, coupled with AS statistical results for very low risk PCa patients like you.

Re your comments about having surgery sooner than later, I can certainly understand the urgency you're feeling about getting the darn thing out. But I would say that you just really don't know yet--maybe there's more cancer and maybe there isn't. (And to look at it the other direction, I remember one person here that his prostate removed after a positive biopsy and his post-surgical pathology couldn't find *any* cancer.) Let things play out for now and gather more info. (I know, easier said than done.)

Think about it this way: my best guess is that right now you're using your prostate fairly regularly. As someone that no longer has a functioning prostate (in my case due to radiation, not surgery), I can pretty much guarantee that you'll want a usable prostate for as long as you can.

Hang in there and keep asking questions until you get comfortable with your diagnosis!

steve you are in the eye of the storm that we all have experienced. I was exactly where you were a few months ago. My case was upgraded to a bit of 3+4 so I decided on treatment. I had a scheduled visit with Dr. Patel, a world-class surgeon in Florida. I also dove into the learning mode and read, discussed, went to conferences, etc. I was all set on surgery until I came across an RO who was able to calmly point out the facts and I am f=going to do HDR brachytherapy. I am not suggesting you choose this treatment but like many have said you need to learn a great deal to be fully informed about your options. I was diagnosed in August 2017 and my first of two treatments is in a couple of weeks.

Become an advocate for your health and learn all you can. And I know about the worrying, and for me, the worry is really fear of the unknown. SO I kneed to get in the know to minimize the worry.

Be well, Denis

Steve—
Roy P. just started a thread on laser ablation for early stage PCa. You might want to follow it. Laser ablation is billed as an alternative for those with G6 and G7 confined to the prostate who aren’t comfortable with AS. I don’t know anything about laser ablation myself, I’m not recommending it. Just pointing you to something you might find of interest.
Here’s a link to UChicago’s page on it: www.uchospitals.edu/specialties/cancer/urologic/prostate/treatment/focal-laser-ablation.html