Just disgnosed 54 yrs old. thoughts on what to do

Met with doctor today to review results of biopsy. Of the 12 slides. one showed a spot, 1mm in size. He said the Gleason score was a 6. Talked about options:

1) Leave it alone and repeat ultrasound every four months.

2) Radiation 5x a week for 8 weeks

3) Remove prostate

I am 54 years old, married, sexually active, and in other wise decent health. The possible side effects of the radiation and removal are more scary then the cancer.

I plan on getting a second opinion for piece of mind.

Any thoughts from those of you who gone through this?

first off welcome and sorry you have to be here.

As far as you dx. I like the idea of a second opinion. Especially on the Gleason scoring. Send the slides to Bostwick Labs or Epstein

You are without a doubt the poster boy for active surveillance. If you can find a solid AS program around you, and you can handle the mental aspect, that would be a fat option.

Now matter what you choose, a full cured recovery is very very likely for you.

Best of luck. Please keep us updated on your progress.

Jordan

Yes, get a second opinion on the slide, first and foremost.

And please do seriously consider Active Surveillance. That was my choice 18 months or so ago and I'm so glad I did.

YHi tmichael, and welcome!

There are a couple resources here which were created for men like you...newly diagnosed with PC, and one small biopsy core only.

First, please do find the "sticky" thread at the top of the page called "Newly diagnosed -- read this thread first." I encourage you to find where it talks about Step-1, and then (out of sequence) Step-0.

Also, I've pulled together some good info to know about AS in another thread which is currently on the first page..its titled "Newly diagnosed -info I wish my doctor had told me" (or something like that). This is still a work-in-process, but may be a candidate for adding to the sticky thread for permanence. The AS fundamentals should be part of your learning process.

You are absolutely right, by the way, that for such a low risk case the treatment side effects are worse than the disease.

1) Second opinion

2) Get a metric ruler out to emphasize how small 1mm is.

3) Gleason 6, active surveillance if #1 confirms diagnosis.

4) You said you are sexually active, a prostatectomy will most likely put a huge damper on that.

Read "Invasion of the Prostate Snatchers" by Dr Mark Scholz, a well known oncologist specializing in PC. It is the best reference on "low risk" prostate cancer, which appears that you have.

You can also google articles by Dr Lawrence Klotz who has been researching AS for over 15 years and has the longest ongoing AS program.
The benefits from a monitored AS program far outweigh any risks involved.

1 mm? That's it? Too bad you discovered it, imho. After confirmation by Bostwick or Epstein, anything beyond AS for now is certainly overtreatment.

Did you have urinary symptoms that led you to get a PSA and biopsy? The reason I ask is that Proscar or Avodart can help with that, and at the same time, may prevent new spots from forming. Something to discuss with your urologist.

Since it is boring when everyone gives the same advice, and since it is almost Halloween, and since I am uniquely qualified to play the role of "The Ghost of Low-risk Diagnosis Anxiety", I will play devils advocate.

Like the Tall One said, 1mm is really tiny. But then the samples that the biopsy needles cookie-cut out of your prostate are also pretty small and the part sampled represents a very small percentage of the overall organ. It is possible that you had a 1mm tumor and the needle got the whole thing. Or the needle might have hit the edge of a larger tumor. No way of telling.

My initial diagnosis looked exactly like yours -- one positive core with a tiny amount of Gleason 6 cancer but that was a misdiagnosis and I eventually wound up with a significant, Gleason 9 tumor that the biopsies had missed (I had four). I forget the exact percentage but something like one in four guys who are diagnosed with Gleason 6 disease but who decide to have surgery anyway will turn out to have a higher grade cancer (than the biopsy had indicated) found when the removed prostate is examined . So, you never know...

Whooo! CLank clank... "The Ghost of Low-risk Diagnosis Anxiety" moans and rattles his chains.

So, given all that, do I recommend that you rush off and get treated? Heck no! Prostate cancer is a slow growing disease and most men with diagnoses like yours can watch it for years -- sometimes for the rest of their lives -- and not need to do anything... anything, that is, except watch it closely. All of the available treatments take a bite out of a man and you don't want to act before you need to.

Just remember that the A in AS stands for "Active." It is called Active Surveillance and you will want to talk to your doctor about how he plans to monitor your disease to keep you safe. He should be able to tell you which tests will be run at which points in the process and what sort of results will trigger futher evaluation and/or treatment. AS is something of a specialty and not all urologists do it well. Make sure you find one who does.

Oh, and that second opinion on your biopsy samples is a good idea, too.

I echo Tudpock18's comment that Peter DA's last two paragraphs, and many of the other replies you've already gotten, are excellent.


If I may embellish on two of PeterDA's other comments, I would like to fill them out with additional "color" for completeness. I welcome PeterDA to comment on my comments, if needed; but hopefully none of my comments will appear in any way objectionable.

PeterDisAbelard. said...
I forget the exact percentage but something like one in four guys who are diagnosed with Gleason 6 disease but who decide to have surgery anyway will turn out to have a higher grade cancer (than the biopsy had indicated) found when the removed prostate is examined.

That's correct, but let me add these two points. Nearly a quarter of the low-risk category men who later went on to surgery also turned out to have lower Gleason grading on their surgical pathology report...wouldn't that stink to have gone through all that and then they can't even find the cancer! Secondly, the vast majority who did have a higher grade after surgery moved only to 3+4, which is nearly inconsequential. Peter's case was a bit different (rare), which I will take liberty to comment on next...

PeterDA mentioned his pre-surgery 3+3/3+4 went to a post surgery 4+5. Today, someone like him, or like you, who chose to follow AS would very likely get a mp-MRI as part of the confirmation process to make sure you are indeed a carefully-selected AS candidate. The multi-parametric MRI has the benefit of looking at the entire prostate (instead of the sampling done in needle biopsy) and look for whether there are high-Gleason pattern cell clusters. PeterDA didn't have that...they weren't that common just a few years ago, but are becoming the new "standard" for AS patients (and part of the "active" part). It's very likely (PDA, please comment here, if you'd like to) that PeterDA's advanced tumor would have been ferreted out with a mpMRI, if he had one done in today's environment.


I offer this info up in the spirit of boosting your "patient education," tmichel. best wishes...

Thank you everyone for sharing. I have made a appt with another doctor from a large medical school in the area that came recommended.

The ironic thing is that I told my best buddy for the past 35 years of my diagnosis and it turns out he was diagnosed with PC the same exact day. What are the odds!

tmichael said...
The possible side effects of the radiation and removal are more scary then the cancer.

This is true at first. Just have to deal with it. Staying alive is the goal.

tmichael said...

I want to live.

Right on! So far from what you've indicated about your case, you life and longevity are not at risk. Make an evidence-based decision, not an emotion-based decision.


Here's a suggestion. Be sure to speak with a doctor who has some AS patients. There are some urologists out there who are strictly old-school "pills-n-procedures." They are a surgeon, and so they recommend surgery!

And further to that point, use exact terminology. Sometimes terms get mixed up under the broader umbrella term of managed care, which includes both "watchful waiting" and "active surveillance." The concept of "watchful waiting" does NOT apply to you. If you haven't already read it, see the excellent posting in the sticky thread "Newly diagnosed - read this thread first" which clearly defines both terms. Then talk to a doc who has active surveillance (in specific!) patients already.

good luck

timichael--based on our screen names, I think we're just on the other side of the looking glass from each other. And I'm also 54 years old, although only for another 10 hours or so.

I've been out of town so just seeing your thread and I'm very sorry you have to be here. You've already been getting great advice so I don't really have much to add, but glad to hear you're open to the possibility of AS. And I think your chances of getting those great-grandchildren some day are excellent!

Good luck and keep us posted.