Hopkins 2nd Opinion Downgrades Gleason Score. Now What?

The pathology report following my biopsy earlier this year scored me at a G7 (3+3, 20% of one core, and 3+4, 40% of one core). Heeding the suggestions received in this forum, I had my slides sent to Dr. Epstein at Johns Hopkins for a 2nd opinion. Earlier today I received the results of the Epstein review.

The good news for me (and now also the quandry) is that Hopkins came back with a 3+3 and a 3+3, with same percentages involvement initially noted (I'm calling the improved score a downgrade, but maybe it's an upgrade?). Both are rated only as a Grade Group 1 (most favorable). An earlier Decipher test categorized me as low risk for progression (albeit at the higher end of low risk).

At this point, based on the initial pathology and Decipher testing, I'm pretty far down the path a treatment selection process, having already had consultations with a RP surgeon, an IMRT RO, and a LDR Brachytherapy specialist. My planned remaining consultations before making a final treatment decision are with a SBRT specialist and a HDR Brachytherapy specialist, these latter two being the finalists I had narrowed by treatment choices down to.

My updated Gleason score sort of screams AS at me. I am supposed to talk to my Urologist later today to get his take on the 2nd opinion and whether I should treat or not. The immediate questions that came to mind is whether or not it is safe to ignore the initial pathological scoring of G7 and just safely assume I'm now a G6, or should I go with a tie-breaker and send the slides out for yet another review?

Assuming the G6 status is valid, I'm wondering how many folks pursue some form of treatment anyway (to nip this devil in the bud)? Or do I now opt for AS and make every effort to improve my diet and exercise regime?

If I thought I had too many options before, it just became more confusing. Help!?!?!?!?

From a spouse's stand point, (if you're married) choose AS for as long as you can. Yes there will be anxiety and testing, but you will have that if even if you get treatment. Why not at least avoid the possible side effects and enjoy life as long as you can?

My husband wasn't diagnosed until he was stage IV - I'm actually very grateful we had those extra years without knowing and/or without side effects.

Ultimately it's what you can live with. Best of luck on your journey!

Boosted, you have no idea how many thousands of men would love to have your "quandary". The perspective of Union98 is great. In AS you'll be carefully monitored for changes and will have all your options available for future treatment. You're already well informed. Good luck.

Great problem to have. What it really means is you can certainly take your time.

Now part of the treatment assessment is to find all the details of the AS program you wish to enter. I say program, and that means you are aligned with a practice that has numerous men in a formal AS program that demonstrates it follows a specific rigor. Look at the JH example and you will see.

Best of all, relax and make vacation plans for the summer and take your time with the treatment assessments.

Congratulations! That is the news you were hoping to hear. Epstein is the Gold Standard and with good reason. There is no one in the US who would question his call.

So what if you already talked to some treatment specialists? You owe them nothing.

Go out and celebrate the good news and jump back on the AS wagon!

Thanks for the responses. Since I posted earlier today, I've had an opportunity to speak with my primary Urologist. He is backing off his initial recommendation for treatment and now advises that I am a good candidate for AS. The AS protocol employed at his large, multi-urologist practice is a DRE and PSA every 3 months for the first year, then dropping back to every six months. Follow-up biopsies are done annually, although he noted that MRI technology has advanced so much that their use may replace some of the needle biopsy work in the future. I just had a MRI done late last week and am waiting for the report. Assuming it offers no surprises, I'm about 98% certain that AS will be my current path since my urologist also confirmed, as has been discussed here, that treatment outcomes are virtually identical if I eventually progress to a Grade 2.

I do plan to follow through and meet with the two other specialists to complete my initial self-education, but it looks very promising now that I can move forward with an AS protocol.

And a special thanks to ASAdvocate - the link provided was excellent and I was able to look at some additional issues of the newsletter as well. Great information!!!

Your doctor's guidance sounds solid and fact-based. Continued best wishes going forward!




You did ask this question in in your opening post which probably still warrants reply:

Boosted said...
Assuming the G6 status is valid, I'm wondering how many folks pursue some form of treatment anyway (to nip this devil in the bud)?

Basically, this IS a choice some men make, but I think (from my own "PC veteran's" view) that you have already looked deeper than they do and educated yourself more than some men do on the topic of prostate cancer. (You would, perhaps, be amazed at some of the cases we see here! Some guys don't want to know. Some guys just say "My doc knows best." Other guys say "My wife wants it out NOW.") Typically, these cases get "rushed" into an unnecessary treatment...before they have time or energy to look deeply on their own. The best advice that peer sites like this can give new cases like yours is: take your time, and educate yourself!!! Today, the number you asked about is really small and still declining...under 2% of all cases are low-risk PC who pursue surgery, but as recently as 10-years ago it was many times larger.

Post Edited (NKinney) : 6/6/2018 12:56:21 PM (GMT-6)

Just listen to TA, elite members aren't often wrong.

and yes to AS - best way to go!

Andrew

Your situation screams AS to me as well. (If it was me I'd be pushing for AS even with the 3+4.)

I know I've already mentioned this several times already in some of my prior posts, but please allow me to once again state how grateful I am for this forum and its members who are willing to share their experiences and opinions. The information I've gleaned here in the short time since I initially found this forum following my diagnosis has been absolutely invaluable in guiding my research into my cancer and consideration of the various treatment options. The best example of this, of course, is the advice I received here to obtain a second opinion on my biopsy slides.

The simple decision to do that has taken me from the depression of considering the consequences of a RP to now believing that I have an opportunity to remain on AS indefinitely by making some serious dietary and lifestyle changes. I am making those changes now - it's not easy to give up foods I've loved my entire life - but more quality years or continuing with the junk food? Seems like a pretty easy choice now that I was seriously slapped with a dose of cancer reality.

I plan to continue my learning about the various treatment options, and if I do eventually experience a disease progression, I'll be making a fully informed decision regarding treatment. In the meantime, I plan to continue to be a sponge in this forum, soaking up the seemingly limitless amount of knowledge and experience that is shared here. This place gives me hope, and you can't ask for more than that.

Boosted said...
...but please allow me to once again state how grateful I am for this forum and its members who are willing to share their experiences and opinions.

You are definitely welcome!


I've got a great quote for you from one of the U.S.'s leading PC clinicians, who also happens to be the PC doctor to a number of men here at this site (not me). Dr Ian Thompson said:

If you have a choice of a dollar today or a dollar 10 years from now, take the dollar today. [Norm adds: time value of money, right?] But if you have a choice of a curative treatment for prostate cancer today or a curative treatment for prostate cancer 10 years from now, choose it 10 years from now.

The linkage between food/nutrition and prostate cancer is present, but scientifically weak...mostly, in my opinion, because it is difficult, if not impossible, to scientifically control the variables adequately in our complex, varied daily diets. But in general, the rule of thumb is "heart healthy=prostate healthy," which is important because heart disease, not prostate cancer, is the #1 killer of men with prostate cancer.

-Norm

It's been a bit over a month since I learned the option of AS was available to me as a result of a revised Gleason rating. Well today, I met with my Urologist for my first AS check-up. Since my prior appointment with him, I had a MRI done to investigate using Brachytherapy as a treatment. Since the MRI had been done in a different medical provider network, I dropped off the MRI report at my Urologist's office a few weeks ago and hadn't given it much thought. My PSA was up slightly, but still in the normal range.

The very first thing he tells me is the MRI report was better than he expected. I asked him what he meant, and he explained that there is some sort (my words) of grading system of MRI results for PC, and that my MRI, by itself, would have not indicated a need for any type of treatment or possibly even AS. I was elated! So between the results of my Decipher test, the Hopkins Gleason rating, and now my MRI, he feels confident that nothing more that AS may ever be required until there is a significant change.

He will continue to check my PSA quarterly, and will have me undergo a MRI assisted biopsy sometime next spring. Apparently, they will use the imaging assistance to focus in on the suspect areas. In the meantime, I've fully committed to a vegetable and fruit diet (if it has a face or a mother, I no longer eat or drink it) and have also eliminated virtually all sugar and refined food products from my diet as well. It's a massive change for me, but the link between fat and sugar and heart disease and cancer is pretty well established by now. I think I can really boost my immune system with better food choices. I want to be one of those guys who can stay on AS the rest of my days.

This has been a crazy year so far - going from being diagnosed (and discouraged), pondering treatment options, and now having some real hope that I can manage this beast. This is a great resource for us and without, I'd probably already undergone an unnecessary procedure or treatment. And even better, if the time ever comes for me, because of this forum, I'll know which form of treatment is right for me.

Boosted, that sounds like a very reasonable approach. Please drop back in from time to time and let us know how you are doing. AS is a very appropriate approach for many men and we really like hearing from those of you on the front line.

Jim