Wow... Got the biopsy results today

We just returned from UCLA after getting the results from the Uronav biopsy. After that scary MRI report, he ends up only having 1 out of 15 cores showing less than 15% of gleason 6 !?!
Regardless, he wants his prostate taken out; he doesn't want to deal with the stress of active surveillance and doesn't want to risk the possibility that the biopsy is missing something more serious.
We are beyond relieved.


Does anyone know how accurate these biopsies are?

Leah,

He's in the panic phase right now. It will pass. With one core of G6, one way to look at is that..well...he has the smallest amount of cancer he could have.

Please do listen to the explanations of AS--the whole point of AS is that you keep an eye on it...and IF something changes, then you do something big. about half the time, nothing ever happens to require further action. And, over the long haul, AS patients do no worse when it comes to longevity--and way better when it comes to side effects (they have none for as long as they go without further treatment).

At least talk to someone besides a urologist. Talk to at least one or two different radiation oncologists about the radiation options--for his kind of case, the cure rates are the same--and the side effect profiles are at least as good if not better.

Leah,
Fantastic news!

But now you have to help to him calm down. Use your great research skills to show your husband that nothing needs to be done right now. And treatment wise, probably never.

Show him that AS is a breeze compared to the lifelong side effects from unnecessary treatments. Side effects that you both greatly will regret.

He’s okay! Convince him not to make foolish decisions that will make him not okay.

The biopsies clearly aren't 100% accurate, but the fact that he had an MRI-guided biopsy does make them more accurate than a random biopsy. Still, I strongly recommend that you get a second opinion on the biopsy slides from Dr Epstein's lab at Johns Hopkins. All they do is read prostate cancer slides (the UCLA pathologists have to read all sorts of tissue samples) and it's very easy to arrange a second opinion with them.

If the second opinion confirms 1 core of G6, I'd personally want to go for AS rather than risk the SEs of treatment, but clearly it's a very personal decision that needs to be up to the two of you. I would point out that AS is very safe. A 20-year (!) study from Johns Hopkins showed no difference in mortality between low-risk men in AS vs those that chose treatment.

I hope the second opinion confirms the small amount of G6. While everyone would prefer "no cancer," this is still just about as good a positive diagnosis as you can get. Good luck to you both!

I guess the main concern for my hubby was knowing that post surgery pathology can change from the initial biopsy findings. Why not take care of it while you are still ahead. The urologist and the surgeon ( Dr. Reiter just happened to be there) both agreed that it is very possible at some point in the future he might need surgery. At this point, he is only 44 years old and should recover well.
We will look forward to Dr. Scholz and we will also send in the slides to Dr. Epstein.

Take it slow! Surgery while useful will change your life.

grading PC cells is a bit subjective - even for the experts. It's always good to get two pairs of eyes to review the samples.

But it is your choice.

don't rush, you've got plenty of time to review all the options and consult with a few doctors before picking a treatment plan.

No treatment for prostate cancer improves your life. Not one.

You accept the certain yet varying degrees of degraded Quality of Life (euphemistically called "side effects"), to offset a greater risk of harm from the primary disease.

So, what's the harm of a tiny G6? How long will that take to progress to a dangerous situation, and would you be likely to miss that it's headed that way? That's the whole point of AS. It's ACTIVE surveillance, not pretending that it's not there.

He's 44. That's very young. There are some issues with surgery; it's a major surgery with inherent risk, also incontinence, and impotence. For example, what does the urologist mean to be "continent"? Generally, leaking urine at a rate of one pad per day is considered continent. Really? I sure wouldn't accept that definition, but your urologist/surgeon will. The prostate is the junction block of the entire genitourinary system. Everything down there is either in it, on it, or runs through it.

And impotence is a real risk. The rates are higher than the medical community admits. Again, at 44, compromised or even ruined sexual potency is a real possibility. So for the rest of his life, dealing with significantly compromised sexual ability? And a removed prostate means dry orgasms. Ok, but another significant change.

For the risk of those "side effects", there had better be a major danger that's being fixed. But a tiny G6? It's just not like that. I would hope the doctor would be responsible enough to address your husband's fears, and get him through the "GAAAAA! Cut it out of there!!" phase.

This is exactly why the USPSTF discouraged PSA testing. People may freak out over such a low risk situation; it would have been better for them never to have been diagnosed. I don't agree with their recommendation, since it misses detecting guys with truly serious situations. But still, wWe have to help guys recognize that a tiny G6 does not warrant the life-changing side effects likely from surgical treatment.

Thanks guys for all the input.

The plan is to do two things:

1- second opinion on biopsy as suggested
2- consult with Dr. Scholz with Prostate Oncology Specialists

He has a few weeks to ruminate before his appointment with Dr. Scholz... I can understand his wanting to just cut it out. That was my first reaction too.
Its crazy that were only able to yield such a small amount of low grade PC from what looked like a very sizable mass on the MRI... rated PI-RADS 4/5 with a 5/5 for the DWI

I was diagnosed with Gleason 3 + 3 prostate cancer with 10% of 2/12 core. It was low volume low grade cancer. I went for seed implant. I had extra-prostatic recurrence in 2016, treated with cyberknife and ADT. In 2018, I had metastatic prostate cancer in about 10 lymph nodes. My case is rather unusual.

When I was diagnosed in 2011, none of the sensitive PSMA scans were available. Now we have very sensitive scans. I would suggest some sensitive scans before jumping into something so drastic as surgery. At 44, it is possible for eventual recovery from all the collateral damages.

With low volume Gleason 3 + 3 cancer, no need to rush into anything. In my case, it was a mistake to jump into treatment within six months of diagnosis. Perhaps waiting a bit longer would have discovered the more aggressive cancer that led to recurrence in 2016 and to metastatic cancer in 2018, which might have led to a different treatment plan.

I also did not get any second opinion. That was a serious mistake.

Leah77 said...
[ I wonder if I need a second opinion?

Not to be overly dramatic but this is his life. Get a 2nd opinion on the slides. And after you talk to your Doc, go somewhere else and get another opinion. The point is you want to make an informed choice. There are so many guys here who just wish they had the chance to do AS. You are blessed with good results. Wishing continued good luck.

Leah, relatively good news, and good advice given.

Dr. Scholz is the king if anti surgery. His book “invasion if the Prostate Snatchers” bears that out.
Expect him, as Halbert said, to push you toward AS.
Not saying that’s wrong at all. Just saying expect it.

A few rambling thoughts based on the posts above.

I can't see a downside to a second opinion on the biopsy slides--especially since it's such an easy process. I know folks have spoken to Epstein on the phone afterwards. So why not speak to him and challenge him on the MRI vs biopsy score?

On that subject, I've seen several folks here where the biopsy was less serious than the MRI suggested. This is all anecdotal, but I've seen it so many times here that I'm not surprised by it anymore.

AS ideally means never treating, but it also might mean delaying treatment--particularly in younger guys. For every year you delay treatment, you get another year free from SEs. (Well, with the possible exception of anxiety, if you consider that an SE.) If you can safely do that (and the JHU study says you can), that would suggest that's a rationale approach to take.

When I was 13, my Dad told me never to make a decision about something when I was excited or angry at the time. To this day, it's some of the most practical advice he ever gave me.

Deciding how to treat any disease is a personal matter. Everyone has their own calculus and at the end of the day, it's your opinion that matters most.

Glad you're advocating for your husband!