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High volume 3+3 and active surveillance?

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Posted 3/26/2018 5:03 AM (GMT 0)
Hi there—my husband was Dx’d four weeks ago.
Age 50
Gleason 3+3
7/12 cores
30%, 2 x 50%, 2x 60%, 70%, 80%
PSA tests at 5.3 and 5.1
Negative DRE
Small prostate, high density and tumor volume
Tumor stretches from apex to other side and looks to be half or more of prostate
Otherwise fit, active, very healthy

We have done tons of research. Urologist scared us to death and said surgery only option. Said he was worried. Then medical oncologist prostate specialist says we can maybe consider active surveillance, pending the results of Johns Hopkins opinion on slides, a 3T MRI and Oncotype testing. We are waiting for JH to get back re: slides and have MRI scheduled for mid April.

We are excited about possibility of active surveillance. Husband dead set on no surgery. Considering seeds instead, as plan B.

I’ve done a ton of reading and can’t find examples of high volume Gleason 6 in a relatively younger men. Is there anyone here who has had large prostate tumor and not been upgraded to 7 or higher?

Thank you!
Posted 3/26/2018 5:28 AM (GMT 0)
Welcome to HW, sorry you need to be here.

Surgeons recommend surgery. When your only tool is a hammer, everything looks like a nail. AS is a better option. Brachy seeds is a good choice as would be RT such as SBRT. That said, surgery isn't a horrible choice, but personally I wanted to avoid that too so I went with RT for my treatment and have been happy with my choice. In his case, either would be curative.

Everyone is so different that it's difficult to compare your case with others. Upgrades aren't that uncommon. Saying the same isn't uncommon either. High volume isn't good, but if it holds at all G6 that's good.

I know it's difficult, but wait for the JH read, before speculating too much more. Keep learning and reading. PC is a slow game, so you've got plenty of time to make an informed decision.

Hang in there and ask all the questions you have. Others will be along soon with more input,
Andrew
Posted 3/26/2018 7:32 AM (GMT 0)
The ordered tests will give clues to suspect higher grade/extraprostatic extension or not. If they are favorable you will be reassured that ithere is only G6 with a very good prognosis. These test are important to decide treatment, that I think is necessary in any case. Good luck.
Posted 3/26/2018 9:00 AM (GMT 0)
May want to consider genomics testing to see a prediction of metastasis. Also look into HDR Brachytherapy as a treatment option. Denis
Posted 3/26/2018 3:49 PM (GMT 0)
I'm glad you're getting the second opinion from Johns Hopkins. If you decide on AS, you should know there's a 20-year study showing it's very safe. Ideally, your husband could do it for a very long time--and maybe even forever. Every year you get is another year of no side effects and another year for treatment options to continue to improve. Good luck and let us know about the second opinion on the biopsy!
Posted 3/26/2018 5:01 PM (GMT 0)
Hi Stray,
I thought to reply since my Gleason 3+3 Pca was similar in diagnosis to your husband though I am a bit older and have a large prostrate and had a positive DRE. See my signature. I investigated going on AS and talked with 5 different doctors and spent quite a bit of time of my own reading to learn as much as I could. Much of the reasons I decided not to go AS was because of my MRI indicated 2 relatively large tumors and one of the
tumors was right up against the prostate capsule that showed irregularities around the capsule. Only one of the doctors I reviewed my case with suggested AS where as the others discouraged AS for me mostly because of the volume of the Pca but also because of the location of the larger tumor right up against the capsule. As you know the Biopsy samples only a small portion of tissue so higher grade cancer cells can easily be missed. I choose to be treated with SBRT because I believed it offered an excellent chance for a cure with low risk of side effects. I was early on against going thru surgery - many choose surgery because it removes the prostate and you do get definitive pathology of the prostate as a result but there is quite some risks of negative side effects which for me would be very difficult to live with.

You have plenty of time to fully investigate and make a decision and I wish you and your husband best of success going forward.
Posted 3/26/2018 5:45 PM (GMT 0)
Welcome,Stray!

I also had GS 3+3 in a lot of my cores on both sides when I was 57. I talked to specialists in surgery, low dose rate brachytherapy, high dose rate brachytherapy, SBRT, protons, and IMRT. All of them had about equal and excellent odds of curing me, 95+%. At the time (2010) we didn't have as much info on active surveillance as we do now, and mpMRIs were not prevalent, or I would have given more consideration to that as well.

Since all were about equal in expected outcome, the most decisive factor for me was potency preservation. The best potency preservation numbers were from SBRT and HDR brachytherapy. Luckily, the most expert practitioners of each were nearby. I finally went with SBRT, just because it was easier (no hospital stays) and less expensive. 8 years later, I have no side effects of treatment other than loss of semen.

But we are all different, and each man has to assess what is important to himself. Here are some questions he might want to ask himself:

/pcnrv.blogspot.com/2017/12/questions-to-ask-yourself-in-deciding.html
Posted 3/26/2018 11:26 PM (GMT 0)
Thank you for all your input. It’s appreciated.

I’m nervous about what upcoming testing will show, but we’ll deal with it when we know.

From what I’ve read, low-risk PC grows so very slowly, something like one cell division every 470 days... So I guess I’m wondering how a tumor that is only Gleason 6 could grow to encompass more than half of the prostate, by the age of 50. The Math doesn’t work there.

Unless the labs weren’t accurate.

The good news we learned is that his prostate is on smaller side, which the oncologist says makes the biopsy tend to be more accurate. 12 needle cores coming from a small gland hopefully give a good picture? We’ll see.

Thanks for posting all of your stories and info here. It’s helpful.
Posted 3/26/2018 11:45 PM (GMT 0)
The studies you read reflect averages. Individual cancers vary a lot in their aggressiveness. If he is sitting on the fence between AS and treatment, he should opt for one of the 3 genomic tests: Prolaris, Oncotype DX, or Decipher (it's available on biopsy cores now). They cost a bundle though ($3000-$4000), so check if his insurance will cover it.
Posted 3/27/2018 12:24 AM (GMT 0)
Tall Allen—can you explain what the Oncotype testing shows? That would be our last piece of the puzzle before deciding on treatment, and we need to use same slides that were sent to JHU. Our oncologist also recommended it.

Everything we’re doing is out of pocket. Our HMO covers surgery and seeds only, and to be honest we don’t necessarily trust the level of care there. We know who we want to do radiation, if it comes to that, but it will be outside of our insurance. Another $4,000 is good to know about, so we can plan.

Or rob a bank?
Posted 3/27/2018 1:24 AM (GMT 0)
They look at a set of genes that, when activated in a cancer cell, make the cancer more aggressive. They have validated that set of genes by comparing the oncological outcomes in thousands of men in whom they were or were not activated. Oncotype Dx reports the oncological outcomes as probabilities of metastases and death within 10 years after surgery, and also reports the probability that the cancer will be non-organ confined (stage T3) or high Gleason score (8-10) after surgery. They have learned that genomic risk is independent of tumor volume, so it may confirm that AS is still a good choice for him:

www.jurology.com/article/S0022-5347(17)77563-5/fulltext

Genomic Health, Inc. may help you with the cost. Contact details are on their website;

www.oncotypeiq.com/en-US/prostate-cancer/healthcare-professionals/oncotype-dx-genomic-prostate-score/how-does-it-compare-to-other-tests

www.oncotypeiq.com/en-US/prostate-cancer/patients-and-caregivers/early-stage-gps/insurance-coverage-and-financial-assistance

Because it is not urgent that he be treated immediately, consider waiting for open enrollment and transferring to an insurance plan that covers the doctor/treatment of choice.
Posted 3/27/2018 3:33 AM (GMT 0)
The people at Decipher will work with you if they know you have to pay yourself. Give them a call and best of luck.
Posted 3/27/2018 5:06 AM (GMT 0)
You guys are great— thank you so much.
Posted 3/27/2018 9:39 AM (GMT 0)
Stray, I was a Gleason 6 with a small amount of 3+4, and still considered AS until the decipher test should higher risk. So for me, it was another piece of data to inform choice. Denis
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