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Recently diagnosed -- Would surely appreciate any comments/perspectives


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Old 09-07-2017, 03:39 PM   #1
Hope4Happines
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Recently diagnosed -- Would surely appreciate any comments/perspectives

I know there knowledgeable folks on this message board, so I thought I would solicit some comments. Here's my current info:

Age 52 at Dx - 8/17 (5th biopsy); MSKCC - NYC
2/14 cores: right base medial, G6 (3+3), 1%, linear amt. 0.1mm; right apex medial, G6 (3+3), 3%, linear amt. 0.5mm
6/17, Pre-biopsy: Prostate MRI (MR PROST PRE TREAT W/O CON) - PI-RADS v2 score 3 - no lesions or adenopathy
Prostate size: 6.4x3.4 x3.8 cm; vol. 43 cc
PSA at Dx: 6.19, fPSA = 23%

In addition, I sent my slides out Johns Hopkins/Epstein for a second opinion, and their pathology report mirrored MSKCC's findings.

Visits with both a surgeon and radiation oncologist at MSKCC were very enlightening, but both suggested active surveillance (AS) as the first course of action given my report.

Thanks!

Last edited by Hope4Happines; 09-07-2017 at 03:40 PM.

 
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Old 09-08-2017, 04:51 PM   #2
IADT3since2000
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Re: Recently diagnosed -- Would surely appreciate any comments/perspectives

Hi Hope4Happines,

Welcome, and you may get your hope!
Fifteen years ago active surveillance was just barely on the horizon, with many doctors suspecting it would just give time for the cancer to go metastatic or that the patient would miss the chance for a cure with immediate therapy. How that has changed!

In 2002 the first paper on active surveillance was published, by a team in Toronto. That was followed by a group at Johns Hopkins in Baltimore, I believe, and then a group in the Netherlands. I believe the fourth institution to publish their early results was MSKCC, the team anchored by renowned surgeon Peter S. Now many institutions have published, and their consistent results clearly demonstrate that active surveillance is the appropriate choice for low-risk patients, and even for some intermediate risk patients. Among other things, we now know that true Gleason 3+3=6 disease rarely, if ever, metastasizes.

To my informed layman’s eye, everything about your case looks solid for active surveillance, with deferral of treatment until more aggressive disease is picked up, which is likely to never happen, but also with a still substantial chance of happening some years downstream, but early enough for effective curative therapy. I can go into details about any or all pieces of the data you provided if you wish.

As you may know already, you are in excellent hands. MSKCC is one of the world’s jewels when it comes to managing/treating prostate cancer. It is world famous for its outstanding research, which has resulted in a number of improvements in practice. It continues to contribute to refinements in active surveillance technology, and of course it is up with the state of the art.

The most recent MSKCC contribution that caught my eye was a paper anchored by radiation oncologist Dr. Z, who is very well known, that showed that patients who were taking the inexpensive drug metformin did quite a bit better after radiation, even if they were diabetic. In fact, the diabetic patients on metformin did better after radiation than the non-diabetic patients, who of course were not on metformin. In fact, that raises the prospect of things you can do to better your already good odds of success, not only with prostate cancer but with cardiovascular health, and general health.

A major advantage of active surveillance, especially for a young man like you, is that avoid side effects for years of your life where you are still young and vigorous (and with a good chance of avoiding them forever). Another advantage is that treatments and other technology continue to improve while you are on surveillance, which helps if you ever need treatment. A third is that the cost of drugs often drops greatly as patents expire and drugs go generic.

That’s a lot to absorb for now, so I’ll stop for this evening.

Good luck to you!

Last edited by IADT3since2000; 09-08-2017 at 04:54 PM. Reason: Added sentence just after posting.

 
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Old 09-11-2017, 09:00 AM   #3
Hope4Happines
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Re: Recently diagnosed -- Would surely appreciate any comments/perspectives

IADT3since2000,

Thank you very much for your knowledgeable and thoughtful reply.

I know the medial community's perspective has changed quite a lot regarding active surveillance (AS), especially with G6 cases, during the past 7 or 8 years or so.

When my wife and I scheduled visits with both a radiation oncologist and a surgeon, we firmly expected both to heavily suggest their respective specialties. I was surprised to hear both recommend AS first and then describe their immediate treatment techniques second.

My main concern is handling it emotionally -- Intellectually, I understand how AS works and the benefits of it. But, of course, on an emotional level, when one hears "cancer," the natural reaction is: "OK, this test caught it early and when it was confined, now let's get rid of it ASAP!"

Thanks!

 
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Old 09-11-2017, 12:23 PM   #4
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Re: Recently diagnosed -- Would surely appreciate any comments/perspectives

Hi again Hope4Happines,

Your reaction – a bit of anxiety in not going for an immediate cure of the cancer – is thoroughly a human and understandable reaction. I have been in that “show me” group too on other cancer treatment issues. It’s natural to want to open the hood, kick the tires, and take the car out for a spin, before buying it.

Fortunately, there is now an abundance of credible, consistent highly favorable research spread around the globe (but an abundance in the US) that supports the soundness of the active surveillance approach for properly qualified patients. You can find that research by going to www.pubmed.gov, a US government website that is under the National Institutes of Health, and using a search string that captures what has been done. It will probably boost your confidence if you do that.

For example, as of today, if you use the string “ active surveillance AND prostate cancer “ you will get 2,725 hits. That alone demonstrates that this has been a hot area of research. If you use the filters on the left to check out research in groups of years, or yearly, since 2002, you will see a huge expansion in research. If you filter for articles with abstracts, that homes in on 2,298 papers. If you add the filter for clinical trials, you get a manageable 124 papers. Adding the filter for “free full text” gives you 55 papers. Adding “ AND Toronto “ to the search string for all these filters focuses on three studies, including one from Toronto, one primarily from the UK, and one primarily from the Netherlands. If you substitute “ AND multiparametric MRI “ for “AND Toronto” you get 8 hits. It’s helpful to at least be able to see an abstract, but it can be even more helpful to see a complete copy of a paper with its tables, graphs and references that you can follow up. By leaving out the “clinical trial” filter you will get a lot more hits, and some of these non-clinical trial papers can give you illuminating overviews.

There are also videos and interviews with expert physician/researchers on active surveillance for prostate cancer, and they can put key issues and concerns in perspective. For instance, Dr. Laurence K at the University of Toronto, Sunnybrooke, whom many would consider as the world’s leading guru for active surveillance and a highly respected, brilliant physician researcher, has recently done a highly informative interview. That said, there are other leading experts, such as Dr. Peter S, a famous surgeon in the US, at MSKCC.


What you will see if you do this homework is that a majority of active surveillance patients have stayed on it indefinitely long from when they first entered the studies, with some exiting to treatment not because surveillance so advised but because they got nervous; probably they would be calmer today based on a lot more research having been booked. You will also see extremely high levels of surviving prostate cancer for active surveillance patients, at various durations of studies, levels that match statistics for surgery or radiation for similar patients. What is critical is that success for active surveillance patients whom surveillance indicates need treatment are virtually as good as for comparable patients who elect immediate treatment. A key benefit these men and their loved ones have won is that they know they really needed treatment and have avoided unnecessary treatment; therefore the side effects they experience are worth it!


I’ll leave you with a final key point for now: active surveillance patients usually have a small “c” cancer rather than “the BIG C”. As just one aspect of this, consider that a key aspect of cancer is that it keeps on doubling in size unless treated, and that is true of cancer suitable for active surveillance as well. However, that “doubling” can take incredibly long. Dr. Laurence K’s research a few years ago indicated that about 20% of his patients had a doubling time of a century or longer! That is so slow that it hardly merits the word doubling, and indeed there is a movement to call this kind of cancer by some other name that does not spook patients so much.

I hope this helps ease your and your wife's concerns and builds your confidence. It might help if she did some of the online research to get a sense of it first hand. Fifteen years ago there was no basis for this confidence, but now there is a solid basis.

 
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