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Active Surveillance - Time to End?

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Posted 1/28/2018 9:15 PM (GMT 0)
Hi everybody!
I was diagnosed in September 2015 (age 46 then) with PC, stage cT1c, Gleason grade 3+3 with 4 of 12 cores positive for malignancy (RLB - 30%, RLM - 50%, RMA - 40%, RLA - 5%). No perineural invasion identifed. No malignancy identified on the left side of the gland. PSA in July of 2015 was 8.91. My urologist strongly recomended RALP or XRT considering my age while I opted for an active surveilance approach.

The PSA history was:
03/2011 (most likely I had cancer developing back in 2011 or prior to it): 4.96,
06/2013: 6.15,
07/2015: 8.91,
05/2017: 8:14.

On January 11, 2018 (age 49 then) I repeated the biopsy at the other medical facility where 5 of 12 cores were found positive for malignancy and the results were:
- left base medial: 6 (3+3), 50% discontinuously.
- left midgland medial:6 (3+3), 45% discontinuously.
- left base lateral: 6 (3+3), 20% of the core. Perineural invasion is present.
- left midgland lateral: 6 (3+3), 15% of the core.
- left apex lateral:7 (3+4) 60% of core discontinouosly.
No malignancy identified on the right side.
The first question I asked the urologist was how it is possible that this pathology report shows malignancy on the left side of prostate and report from September 2015 shows malignancy on the right side. He did not have any specific answer but saying: " I don't know." When discussing the treatment option, he recomended RALP stating, like the urologist I visited in 2015, that would be the best option considering my age and he advised against continuing active surveillance. I told him that I will get back to him soon. Clearly, the cancer is changing and I am facing the moment when I need to make a firm decision instead of waiting and risking that cancer will progress more agressively. Now, I am considering the RALP, but the question is should I rush it and have it done next month or so, or at least by the end of this year. Also, how much should I worry about PNI detected in one of the cores? Any advise is greatly appreciated.
Thank you all!
Posted 1/28/2018 9:30 PM (GMT 0)
I can understand how you're ready to end your AS now that you've had one G7 positive core. That said, I know there are AS programs that will accept low volume G7 guys so I don't think it would be crazy to continue it. Also, I would recommend that you get a second opinion on your biopsy slides from Dr Epstein's lab at JHU. It would make sense to know for sure if the G7 is truly a G7.

But assuming that you are going to seek active treatment, I definitely don't think you should rush into having surgery. Even high-risk guys have months to make a treatment decision. My advice would be to use that time to really explore your options--if you go the surgery route, you probably should talk to more than one surgeon. And I would also recommend that you talk to at least one radiation oncologist. It's not a surprise that both uros recommended surgery since uros are surgeons by training. I think you'll also want the perspective of an RO. Keep in mind that with your diagnosis, pretty much any treatment will cure you so this is the time to get smart and learn about the SEs each option has.

Good luck to you and I hope we can help.
Posted 1/28/2018 9:43 PM (GMT 0)
aabos,

A first thought is that you've done 2 1/2 years of AS, and that's a good thing. A reality about PC is that it is usually multifocal, that multiple lesions form in the gland, and that it's not unusual for biopsies to miss a spot...and subsequent biopsies will find them.

I would suggest you ask for your slides to be sent to Johns Hopkins for confirmation, they are the best. After that, if the G7 is confirmed, then consideration of treatment options is likely in order. I would strongly suggest you investigate the radiation options with qualified radiation oncologists. We say in here all the time that urologists are surgeons, and they recommend surgery because that is what they know. Don't ask a urologist about radiation therapy, any more than you would ask a carpenter how to fix your furnace.

Beyond that, know that we are here to support you, and help you sort out the options. And, you're still mostly G6, which means you have time to make an informed decision. Take that time, and make the decision that is best for YOU.
Posted 1/28/2018 10:20 PM (GMT 0)
Could it be that you always had cancer on both sides, and the first biopsy missed the cancer on the right, and the second biopsy missed the cancer on the left? That sounds improbable, but improbable events occur all the time (but not as often as highly probable events). It seems unlikely that the malignancy on the left disappeared in the intervening years.
Posted 1/28/2018 10:21 PM (GMT 0)
Hello AA and welcome. All I can add is, "what Michael and Halbert said....".

Jim
Posted 1/28/2018 10:25 PM (GMT 0)
My 12 core biopsy showed 3 positive cores in one quadrant, G6. Three months later, my post surgery pathology showed G7 in all 4 quadrants. Those biopsies see less than 1% of the gland. They miss a LOT.
Posted 1/28/2018 10:47 PM (GMT 0)
I know it seems weird but would it be possible that not all pathologists take the same reference to define the prostate sides? A friend that had biopsy and surgery in the same centers I did mentioned me that his lesion was in opposite sides in biopsy and pathology. He had this theory of different references and my first thought (before my surgery) was of course that he was completely wrong. But it turned out that the same thing happened also exactly in my case. According my path report my tumor was practically all in the oposite side than the main finding in the biopsy and the findings in ultrasound and MRI images.
Posted 1/29/2018 1:22 AM (GMT 0)
Just my opinion, but I would say it is time to end AS. When I started AS I set certain parameters on when to take action which were:

- No Gleason 7
- No core over 50%
- No more than 3 cores showing cancer
- PSA under 10

These parameters were based on my own research but my surgeon approved of them. You've already passed 3 of my 4 parameters and at your young age it may be taking too much risk to remain on AS.
Posted 1/29/2018 1:37 AM (GMT 0)
FWIW, I agree with Dreamerboy. If I were in your socks I'd be thinking about treatment. I'm not sure I'd wait until the end of the year, but there's no need to do it next month either. But I'd do it. I also agree that you probably had cancer on both sides all along. We're talking about what happens to be literally at the tip of a needle. You could do it any number of times and still miss something.

Good luck with your journey. Nobody looks forward to treatment, but you'll get through this and you'll be ok. Hang in there.
Posted 1/29/2018 2:25 AM (GMT 0)
man you have more guts (or balls) than I ever had. First the cancer is on the right, now it’s on the left? Hard to believe the biopsy could miss 1/2 of the prostate the first time. You have more tolerance for uncertainty than I could ever stand. What can I say, seems like you should be considering surgery or some form of radiation by now... no proof of that, just a gut feeling
Posted 1/29/2018 2:18 PM (GMT 0)
AS protocols usually include mpMRIs. If there are worrisome signals, they usually mark the end of AS. I agree with others that your case is borderline or more; many cores with much occupation. Conventional biopsies only provide a very small sample of what may be going on in the prostate. Findings may be overgraded in a biopsy but they can also, and more frequently, they can be undergraded. Anyway, I hope you can stay in AS, it is understandable that you want to remain without definitive Treatment.

.
Posted 1/29/2018 2:47 PM (GMT 0)
I`m a post toastie....and highly recommend you check ALL the radiation treatments ....the knife ...well...hmmmm..............good luck on which treatment you decide on ....but it does seems like it`s time to move forward ....David
Posted 1/29/2018 5:22 PM (GMT 0)
I'm interested if you had an MpMRI at any point. From what I understand from AUA guidelines and talking with Uro and RO, I'm guessing it may be time to treat.
Posted 1/29/2018 7:09 PM (GMT 0)
Thank you all for replies and advises.

ejc61 - I had both MRI scan and bone scan done shortly after first biopsy (October 2015) and both results were negative.

It seems to me that staying on active surveillance could be risky, since cancer is changing.
I have scheduled appointment with radiation oncologist on February 6th in order to get the better insight on this treatment and possibility of having it done instead of RALP.

Any inputs about radiation treatments and the success rates?
Posted 1/29/2018 9:14 PM (GMT 0)
Regarding radiation, there's a few types and in general you'll find that ROs specialize in one type. In broad terms there is external beam radiation (IMRT or SBRT) and brachytherapy (radiation directly placed in the prostate. Brachy comes in low dose (radioactive seeds) or high dose (temporarily implanted). I think you would likely want to focus on either SBRT (only five treatments) or HDR brachy.

Running all of this down could take some time, but you don't need to be in a rush.

With a favorable intermediate diagnosis (G7 3+4), success rates are all about the same (i.e. very good).
Posted 1/29/2018 11:55 PM (GMT 0)
I am halfway through the HDR-BT and all is good and the procedure was simple. A bit of urinary burning for two days. And my perineum was sore for about 5 days, due to 15 catheters. My second treatment is a week from tomorrow and then I am done. We have similar numbers, learn all you can about the options. Denis
Posted 1/30/2018 12:07 AM (GMT 0)
I've hesitated to comment, as we are about 25 years apart in age, and what I might decide for myself could be the wrong advice for you. But, I agree with the others that you should consider having treatment.

Michael and Denis have provided good direction on your radiation options. Either SBRT or HDRBT would be my choices if I needed treatment. But then, again, my advice is qualified by my different age status.
Posted 1/30/2018 12:19 AM (GMT 0)
Many AS programs make a distinction between the indications for starting on AS and the triggers for coming off of it. While you may or may not have not started on AS had you known about the GS 3+4 (and I note the 60% did not come from a large index tumor because it was discontinuous within the core), the fact is that you've been monitoring it closely and you would continue to do so if you stay on AS. Dr. Klotz, the head of the longest-running AS program in North America only advocates coming off of AS if there are cores of gleason 4+3 or greater.

You may wish to have one of the three main genomic tests - Prolaris, Oncotype or Decipher - to help you decide. It will tell you if your tumor is of the aggressive type (requiring treatment soon) or the indolent type (perhaps never needing treatment).

Young age is most definitely not a valid reason for having treatment:

/pcnrv.blogspot.com/2017/08/the-myth-that-younger-men-should-not.html

/pcnrv.blogspot.com/2016/08/can-man-be-too-young-for-active.html

Age is also not a valid reason for chosing between surgery and radiation. I urge you to investigate all options thoroughly. You have plenty of time:

/academic.oup.com/jjco/article-abstract/47/11/1083/4107913
Posted 1/30/2018 10:13 AM (GMT 0)
I agree with TA. I did decipher tests once I was upgraded to 3+4. Even though the 3+4 was <5%, my decipher score was less than favorable, so I decided treatment was in order. I then used the next 4 months to learn and decide on treatment. Denis
Posted 1/30/2018 2:23 PM (GMT 0)

Tall Allen said...
Many AS programs make a distinction between the indications for starting on AS and the triggers for coming off of it. While you may or may not have not started on AS had you known about the GS 3+4 (and I note the 60% did not come from a large index tumor because it was discontinuous within the core), the fact is that you've been monitoring it closely and you would continue to do so if you stay on AS. Dr. Klotz, the head of the longest-running AS program in North America only advocates coming off of AS if there are cores of gleason 4+3 or greater.

You may wish to have one of the three main genomic tests - Prolaris, Oncotype or Decipher - to help you decide. It will tell you if your tumor is of the aggressive type (requiring treatment soon) or the indolent type (perhaps never needing treatment).

Young age is most definitely not a valid reason for having treatment:

/pcnrv.blogspot.com/2017/08/the-myth-that-younger-men-should-not.html

/pcnrv.blogspot.com/2016/08/can-man-be-too-young-for-active.html

Age is also not a valid reason for chosing between surgery and radiation. I urge you to investigate all options thoroughly. You have plenty of time:

/academic.oup.com/jjco/article-abstract/47/11/1083/4107913

Hi TA, Thanks for weighing in on this valuable issue of when to exit AS. I have about a dozen of your blogs on other topics bookmarked, that I often cite in posts.

On this topic, I'm not sure that I would readily follow my own institution's advice to get treatment, depending on the tests, so this is certainly an area of personal wishes and perspectives.

I think that both Sunnybrook and JH started enrolling AS patients in 1994 or 1995, so the "longest-running" title may be doubtful, but that is a nit.

Can you provide a link for Dr. Klotz stating that patients should come off AS only if G(4+3) or greater were found? That is something very different from what I hear at JH, and I would like to learn more about his reasoning. Thanks.
Posted 1/30/2018 2:53 PM (GMT 0)
Tons of stats/studies in this blog as well....https://www.hindawi.com/journals/jnme/2016/2917065/ yeah
Posted 1/30/2018 5:50 PM (GMT 0)
ASAdvocate-

I was wrong to say "longest running." What I should have said is it has the longest follow up (20 years) in North America.

Klotz originally had two criteria for intervention:
1) Detection of any Gleason 4+3 or higher
2) PSADT<3 years
(and radiological evidence)

In the following, he discusses why he got rid of the second criterion.

Klotz said...
LIMITATIONS OF PSA KINETICS AS A TRIGGER FOR INTERVENTION
In the early days of active surveillance, PSA kinetics was an appealing trigger for intervention. This was based on the simple observation that most patients with advanced prostate cancer had an elevated PSA, and, therefore, a stable PSA likely implied stable disease and vice versa. Until multiparametric MRI became available, men on active surveillance (AS) with poor PSA kinetics (doubling time <3 years) were offered treatment. In the PRIAS multi-institutional AS registry, 20% of men being treated had intervention based on a PSA doubling time less than 3 years [26]. Indeed, in a report of the five men dying of metastatic prostate cancer in the Toronto cohort, all had a PSA doubling time of less than 2 years [29]. However, PSA kinetics turned out to have a crucial limitation: lack of specificity. The liability of PSA, and the high prevalence of inflammatory causes of a sharp transient rise in PSA, severely limits the reliability of PSA kinetics as a trigger [30]. In a study of PSA kinetics in a large surveillance cohort, false-positive PSA triggers (doubling time <3 years, or PSA velocity >2 ng/year) occurred in 50% of stable untreated patients, none of whom went on to progress, require treatment or die of prostate cancer [31]. Vickers [32], in an overview of all of the studies of more than 200 patients examining the predictive value of PSA kinetics in localized prostate cancer, concluded that kinetics had no independent predictive value beyond the absolute value of PSA. Currently, PSA kinetics are used as a guide to identify patients at a higher risk, but not to drive the decision to treat.

/journals.lww.com/co-urology/Fulltext/2015/05000/Defining__progression__and_triggers_for_curative.15.aspx
Posted 1/30/2018 8:09 PM (GMT 0)
From the same study, re bio-marker progression. Prolaris or Oncotype DX to best estimate biochemical progression before surgery; Decipher to more accurately predict it after surgery.

Biomarkers

Two biomarkers have recently been approved by the US Food and Drug Administration (FDA) on the basis of their ability to predict progression in low-grade prostate cancer patients: the Prolaris assay [38] (Myriad Genetics Inc., Salt Lake City, Utah), which looks for abnormal expression of cell cycle related genes; and the Oncotype DX assay (Genome Health Inc., Redwood City, California), which identifies a panel of genes linked to a more aggressive phenotype [39]. The Decipher assay, a tissue-based 22-marker genomic classifier evaluating noncoding RNA sequences, has been demonstrated to accurately predict the risk of biochemical progression after radical prostatectomy [40]. The Mitomics assay, which identifies the presence of a functional mitochondrial DNA deletion associated with aggressive prostate cancer [41], is not yet FDA approved. These tests hold the promise of interrogating the microfocus of Gleason 6 found on biopsy for accurate information about the presence of higher grade cancer elsewhere in the prostate, or the future likelihood of progression to aggressive disease. That the biomarkers can achieve this confirms the interrelationship of heterogeneous multifocal cancers.
Posted 1/30/2018 9:36 PM (GMT 0)
garyi-

As I mentioned before, you are quoting old and outdated information. Decipher is now being offered based on biopsy cores for the last 2 years. Validation studies were done among AS patients at Cleveland Clinic and at Brigham and Women's Hospital that showed it was a very good predictor of Gleason grade progression and for metastases. You can read about it here:

deciphertest.com/physicians/ click on "Prostate Biopsy"
Posted 1/30/2018 10:04 PM (GMT 0)
Tall Allen-

You know how highly I think of the Decipher people, their superb customer service, and the interesting marketing article you cite. I'm just repeating what my uro and two RO's told me, including Dr. Anthony D'Amico, who wrote an article about it, nine months ago.

http://ascopubs.org/doi/abs/10.1200/JCO.2016.71.8486

Much is being learned everyday about genome science, and I'm sure every test will yield improved data about estimating risk progression. Thanks for you insights.
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