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Posted 11/13/2018 2:11 AM (GMT 0)
I was diagnosed on Oct. 31, 2018 - 12 days ago. My doctor called with the information and I am still waiting for the consultation which will happen in one week after I have had a CT scan and a chest Xray. The wait for more info is excruciating. I have been researching PC daily and have sent my biopsy cores off for a second opinion by Johns Hopkins. I guess my main question for those on this forum is this: I'd really like to try active surveillance, but some of my research seems to indicate that with cancer detected on both sides of my prostate, even though it is G6 and Grade 1 and only a low percentage in each core, I may be excluded from active surveillance. Does anyone have information to shed light on this situation? Thanks in advance for your help!
Posted 11/13/2018 3:03 AM (GMT 0)
As I understand it you should still be eligible for AS, even with cancer detected on both sides of the prostate. (And good for you in getting a second opinion on the slides, which might change that result.) See the American Urological Association Guidelines For Localized Prostate Cancer (unabridged version) available here: https://www.auanet.org/guidelines/prostate-cancer-clinically-localized-(2017)

As things stand now you're Grade 1, PSA<10, T2c, which puts you in the favorable intermediate group. See Recommendation 19 of the Guidelines, which reads in part:
"Active surveillance may be appropriate in selected patients with intermediate-risk disease who have selected deferred primary treatment to delay treatment-related toxicities until tumor progression. Patients who are considering surveillance may benefit from an MRI and targeted biopsy. If the MRI is negative, or targeted biopsy shows only Gleason 6 disease, they are likely to have a favorable prognosis, and surveillance is a reasonable strategy."
Posted 11/13/2018 3:31 AM (GMT 0)
Sorry you are here but it sounds like your diagnosis is pretty good. Better opinions will be along soon. Where are you located?
Posted 11/13/2018 3:38 AM (GMT 0)
I’m in South Louisiana.
Posted 11/13/2018 4:04 AM (GMT 0)
Even though you "may" be eligible for AS I would suggest with your pathology you might consider SBRT. It is a short period of TX lasting 4-5 days. SE's are usually minimal, particularly if you are not already experiencing any urinary issues from an enlarged prostate and have no ED issues.

If you find a program that will accept you for AS and it is one that really feels you have a good chance of going a few years ( or more ) before needing TX then that would be a good way to go. Beware of pushing them to accept you if they are hesitant to do so as you just might be delaying the inevitable by a few months or a year or so, in which case maybe better just to get the TX now.

I would suggest to at least do your homework on SBRT as well as the other EBRT's while you are looking into the AS programs available to you. Be very very wary of the surgical approach given your numbers.

Be well and choose wisely based upon a "major" wealth of information.

Roger

And yes I am SBRT biased.
Posted 11/13/2018 5:04 AM (GMT 0)
Welcome to HW, sorry you need to be here.

I'd wait for the second read on the cores. Likely you'd be fine doing AS.

But you'd want to find a good program and docs who can help you so the needed monitoring and tests.

Keep us updated on your progress,
Andrew
Posted 11/13/2018 8:08 AM (GMT 0)
I had a very similar biopsy result after a previous mpMRI showing a PIRADS5 lesion and I had surgery. The path result showed high grade. Of course, everybody is different, but if you decide to enlist in a AS program I would recommend it has regular mpMRI checks, not only biopsies.
Posted 11/13/2018 10:33 AM (GMT 0)
Our pathologies are almost identical. On second opinion I had one core upgraded to 3+4, 5% of the core. I also then had the decipher test run and it was less than favorable, so we decided to treat. Keep asking questions and researching, you will find your answer. It took me 6 months to come to a decision. Denis
Posted 11/13/2018 12:11 PM (GMT 0)
Hi Tigers sorry you are having to deal with this. I think AS is definitely worth pursuing. However I would recommend some genetic tests off your biopsy slides. This will confirm the aggressiveness of the cancer and identify any genetic mutations or markers that may be useful. You can see two I used in my profile below,.but there are other good ones too. See this recently published article https://pcri.org/insights-blog/2015/8/5/the-prolaris-test-for-prostate-cancer-pt-2 Also a T3 MRI will locate tumor and rank it. There are plenty of successful AS guys out there. If you are going down that road you can't worry or be too anxious about your test results. It will take all of the fun out of being on AS. Good Luck!
------------------------------
68 yrs., marathon runner, 34 of 44 3D-CRT/IMRT Radiation delivered via 3D-CRT in 1.8 Gy minimum dose fractions to a total of 79.2 Gy., 10.5.18. PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 93 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.

Post Edited (SantaZia) : 11/13/2018 5:38:50 AM (GMT-7)

Posted 11/13/2018 12:15 PM (GMT 0)
Tiger, Once you get your 2nd opinion results back, you'll know more. AS should be a good option for you. We do have a few members in your area that may check in soon to offer a proper Louisiana greeting. Even with AS, it's important to be enrolled in a program, rather than doing it on your own--that helps keep the "Active" part going.

As you probably have heard, the whole point of AS is to keep a close eye on things, and IF something changes, you'll catch it in plenty of time to act on it--and if nothing changes, then you're fine for a long time without doing anything major.
Posted 11/13/2018 2:09 PM (GMT 0)
Bilateral involvement is more of an issue at Johns Hopkins than it is at other large AS programs. I am part of the JH study group, and they are more strict than other institutions, maybe than any place else.

So, go ahead and investigate AS criteria at other large institutions, as many do not include bilateral criteria.
Posted 11/13/2018 2:32 PM (GMT 0)
Sorry about your diagnosis and yes, the waiting sucks. If JHU shows a G6 and you're inclined to pursue AS, I think that makes a ton of sense if you can find the right AS program. Hopefully you could be on it forever, but even in the event it's a short time I still think there's benefit to that. You're young (from a PCa perspective) and no sense risking treatment before you need to.

If you do end up treating, take your time and investigate all of your options. You have every reason to think you'll do very well. Good luck and I hope we can help.
Posted 11/13/2018 6:21 PM (GMT 0)

“Geaux Tigers” said...
I’m in South Louisiana.

I think Dr Oliver Sartor is a well known Doc at Tulane. If I lived there I'd see him for an opinion. Others here probably know more about him.
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