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Old 08-24-2012, 09:23 AM   #1
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Active Surveillance - My visit with my Uro yesterday.

Had a visit with my Uro yesterday for the first time after my Bx. He went over the results again, three out fourteen cores, all G6, 10%, 20%, and 20%. Stage T1C, organ confined based on the US.

He went over available treatment options which include AS. I asked him what option he would choose if it were him, and his answer was "AS". Kind of surprised based on my age of 58. Seems like AS is gaining momentum in the low risk patients? Or is it the west coast laid back attitude?

His AS program is a lot less stringent than most of what I have read. PSA every three months, Color Doppler Elastography US ever six months, perhaps add MRI (not a requirement) once a year, and Bx every TWO YEARS???
My Uro seems to have a lot faith in the CDEUS to catch cancer eventhough it did not do so during my Bx. He said that my tumors are too small (smaller than 5mm) for the reason the CDEUS failed to catch my tumors during my Bx.

At UCLA, their AS program requires a Bx six months after the initial Bx to confirm the results, then PSA and DRE every six months, and depends on the results of PSA and DRE, Bx at least once every twelve months.

These programs seem to be so much less stringent than most of what I have read from the most popular books, their requirements are much more stringent especially the Bx requirement (more frequent).

Will be seeing another Uro for his opinion, and perhaps more, before decision is made.

Comments welcome.


mP

Last edited by Akai; 08-24-2012 at 09:26 AM.

 
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Old 08-24-2012, 11:18 AM   #2
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Re: Active Surveillance - My visit with my Uro yesterday.

You seem to have an excellent Uro, imho. He has the fairly unique tools to help you stay on top of your AS, if that's what you choose. As I mentioned, AS is no longer for older men or for men with "very low risk" PC anymore, at least at the best tertiary care centers. It's not just in "laid back" California - LOL! The evidence has been too good in the last few years.

The only reason for a biopsy after a year is to find anything they missed on the first biopsy. After that, follow-up biopsies are only done if there is evidence from PSA or DRE that there is progression. If the cancer foci are too small for CDEUS, what's the difference what a second biopsy reveals? The point is that you have microscopic foci of low grade cancer and you are extremely fortunate to have CDEUS, and one of the few world experts at reading it, rather than a biopsy, as your tool for monitoring any growth. You will also have frequent PSAs and DREs to monitor any progression. My only concern would be that your CDEUS is too frequent - if it were me, after the second one, I would slow down the pace unless there's biochemical evidence of progression. Maybe I'm one of those laid back people you spoke of. :-) The biochemical evidence can also include PHI soon, which has been shown to be a good AS tool in recent trials.

There's a good chance that you have the kind of indolent, insignificant disease that will never need treatment. Let's hope so.

- Allen

 
Old 08-24-2012, 01:30 PM   #3
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Re: Active Surveillance - My visit with my Uro yesterday.

Allen:
From your lips to god's ears, I sure hope my cancer is indolent, but since there is no test to confirm that at this point, one has to assume the worst. I do not know if I have much faith in the CDEUS as my Uro, especially when it did not detect my cancer, perhaps it is true that mine are so small to be detected. But Dr. Walsh's book warns of those doctors that use CDEUS to detect cancer instead of biopsy. The parametric MRI also gave false positive (8mm suspicious area in Central Zone - despite the claim of 94 specificity - perhaps the person who read it was not as experienced).

I am not as confident as I was prior to going through these tecnologically advanced procedures, I now see the limitations of using these technologies.

It is hard to not take a drastic action such as surgery while the cancer is still insignificant and knowing that I could be cured of prostate cancer forever. I am still weighing the risk/reward of all options. My wife already stated that she prefers the AS option.

Last edited by Akai; 08-24-2012 at 01:32 PM.

 
Old 08-24-2012, 07:55 PM   #4
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Re: Active Surveillance - My visit with my Uro yesterday.

Although I'm fairly cetain that A/S will not be an option for me with my PSA velocity doubling every 1.4 years, my concern is this.......I've read that of those men on a/s 45% find that while taking future biopsies to keep a check on their psa, their gleason score has increased from the oriignal biopsy. The question that is still unanswered is this....Is the increase in the Gleason score due to what might have been missed on the initial biopsy? or an actual progression of the disease? That is something that needs to be considered.

Last edited by Infinity29; 08-25-2012 at 09:05 AM.

 
Old 08-25-2012, 08:11 AM   #5
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Re: Active Surveillance - My visit with my Uro yesterday.

Akai,

(As I remain in an endless learning mode), I really appreciate you (and Tall Allen, and Infinity29) sharing your experiences and thoughts.

I (like you) was surprised that the CDEUS imaging was so apparently useless. (I had been considering paying for that kind of imaging as a “pre-biopsy” step, but your experience is making me less interested now.)

As to your thought that it is hard to do AS opposed to “being cured of prostate cancer forever” – my thought is; if only it was that simple. My searches and studies indicate that a fairly significant number of men who have their prostate removed, suffer a reoccurrence later in life anyway. My good friend (who had his is prostate removed 10 years ago), is now struggling with raising PSA and new choices.

When you consider that even if you had your prostate removed, you’d still have to have regularly scheduled urologist appointments and PSA tests, perhaps AS isn’t too bad an option?

Remember the longer we wait, the better the treatments get!

 
Old 08-25-2012, 09:31 AM   #6
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Re: Active Surveillance - My visit with my Uro yesterday.

Siesta, whether CDEUS is a useful tool or not is still debatable, but as a sole source of dtecting cancer, in my opinion, it is not. Others may have different opinions/experiences. One of the benefits, I believe, is an ability to more precisely revisit those tumors, as well as avoiding those negative spots in subsequent Bx, pretty much mapping your samplings. Dr Walsh, in his book, says that cancer changes the whole prostate not just at certain spots, and that may make detecting cancer by trying to differentiating the cells difficult if not iimpossible. This is why Bx is the only sure way (assuming it does not miss the targets - saturated Bx is gaining ground?). I am new to this and also struggle to grasp the severity of my disease. Perhaps the low grade/low volume allow me not to panic, but my life has changed for sure.

 
Old 08-25-2012, 09:33 AM   #7
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Re: Active Surveillance - My visit with my Uro yesterday.

Hi SiestaKeyJimmy,

The problem with many of the imaging modalities, including color doppler ultrasound and MRI-Spect is that they are very dependent on the skilled eyes of the reader. I saw one study where one radiologist with two years of experience read the same images as another radiologist with 20 years of experience, but only found half the tumors. Doctors like Lee, Bahn and Ukimura are very skilled but nobody's perfect.

That doesn't discount the value of the test, however. I went with a friend to get a CDUS from Dr Bahn last year. He found two lesions -- one that the biopsy missed. My friend went back 6 months later and the two lesions had not grown at all (nor had his PSA), which was quite a relief to my friend, who now remains quite happily on AS. His lesions were both around 5 mm long. If someone has cancer too small to be detected, that in itself is a good thing to know.

I agree that the longer we can hold out, the better the detection methods and treatments get. Lately, I've gotten particularly interested in nanotechnology applications for both detection and cure -- amazing stuff!

- Allen

 
Old 08-25-2012, 10:15 AM   #8
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Re: Active Surveillance - My visit with my Uro yesterday.

I think Allen is definitely right. The waiting is very difficult, also, what is promising in a study does not always pan out in real life application.

Allen, are you referring to Bind 014? How long will it be before FDA approval? How do you target all cancer cells unless you know where the all exist? I think this is why Dr. Walsh argued against "targeted" treatments, prostate cancer being multi focals.

Dr. Ukimura talked to me about focused cryo on two of my tumors on the right base but leave the left apex alone if I choose to go with this option. The left apex is close to the nerve and he does not want to treat it unless it it necessary. It does not make sense to me to partially treat my cancer, to me, you either try to get all, or all the known, or not at all.

I am concerned about the miss opportunity that is associated with the AS option, still trying to weigh the risk/reward of AS vs others.

Please feel free to comment on other options, I have not researched other options as much. Any options that will preclude me from surgery in the future are not as favorable to me.

Thanks,
Mp

 
Old 08-25-2012, 10:57 AM   #9
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Re: Active Surveillance - My visit with my Uro yesterday.

Quote:
Allen, are you referring to Bind 014? How long will it be before FDA approval?
I was not referring to that particularly. There is a wide array of nanoparticles, some with gold, some with iron, some with platinum that are being explored in a number of uses. Some attach only to cancerous or non-cancerous cells and can be detected by MRI, some attach to PC membrane antigen and are highly PC-specific, some are carriers of viruses that will only kill cancer cells, etc. All of them are long from FDA approval. Like most other treatments, the FDA usually first requires them to show a survival benefit, so they are tested first for advanced metastatic disease. Only later are they tested earlier in the disease process. I hope the FDA will revisit its drug approval process.

Quote:
How do you target all cancer cells unless you know where the all exist? I think this is why Dr. Walsh argued against "targeted" treatments, prostate cancer being multi focals.
While PC is often multi-focal, sometimes it isn't. There is a theory, with some sound backing, that PC spreads from an "index lesion"-- the mother cancer. In theory, if you get the index lesion, you curtail its spread. Focal cryo has minimal effect on QOL if it avoids damage to nerves, blood vessels, urethra, etc.

Quote:
It does not make sense to me to partially treat my cancer, to me, you either try to get all, or all the known, or not at all.
The way I look at focal therapy is as a way to at least slow the cancer down and give many more years, if not a full lifetime, on AS.

Quote:
I am concerned about the miss opportunity that is associated with the AS option
I'm not sure what missed opportunity you're referring to. I would think it opens up opportunities for future treatment. Do you mean, what if it metastasizes while on AS? That would be exceedingly rare -- that's what you'd be actively monitoring it to prevent. But no treatment is certain. Even surgery for low risk cancer does not have a longterm 100% recurrence-free survival: cancer cells may have escaped the prostate before treatment, cancer cells may have been released when the tumor was accidentally cut into, cancer cells may have been left behind by "nerve sparing."

- Allen

 
Old 08-25-2012, 11:35 AM   #10
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Re: Active Surveillance - My visit with my Uro yesterday.

"cancer cells may have been released when the tumor was accidentally cut into"

When I asked my urologist about "needle tracking" he also said there has not been any proof that biopsies hitting cancerous areas can spread the cancer into the bloodstream. It certainly does sound reasonable to me as a possibility and of course an additional worry. Alot of unknowns.

 
Old 08-25-2012, 02:13 PM   #11
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Re: Active Surveillance - My visit with my Uro yesterday.

My feeling is if one has low grade PCa and can follow AS, would be the way to go. An AS programs is to monitor for progression and if there is then it is time to decide on a treatment. I cannot understand why someone with Gleason 6, 1 core out of 12 and a low PSA (<10) goes for a RP, which I have seen many times. To live with ED and dealing with incontinence is a big reason to take the chance with AS. Just my opinion and what I am following.

 
Old 08-26-2012, 07:05 AM   #12
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Re: Active Surveillance - My visit with my Uro yesterday.

I am also one of those guys who believe that POSSIBILITY – the biopsies can POTENTIALLY spread cancer. (Of course I have been beaten into the ground on this – of course a Urologist would never ever hint at that this was even possible.).

Most argue that biopsies do not spread cancer – their arguments are – if they did, how come there are millions of biopsies happening and very little evidence that they caused any spreading? Also that the immature cancer cells cannot live outside their environment – and if some cancer cells get out – they die.

But as I endlessly learn about medical treatments I see that almost NOTHING is absolute. So how the medical profession can say for sure that “Needle Tracking does not spread cancer” - doesn’t make sense to me – again, almost nothing is absolute.

My feeling is probably 99% of the time; Needle Tracking is not a worry. 99% of the time the biopsy penetrated ether non-cancerous cells – or low Gleason cells – too immature to live out on their own, therefore not a concern.

And usually, when the needles cut into aggressive cells that possibility could live outside the prostate, the person will be getting treatment, that should clean up most of the area, especially if some radiation is also involved. (Which incidentally is one reason why I’m beginning to personally think that any treatment that includes radiation of the prostate bed makes sense).

So in my mind the “truth” is that needle tracking could probably occasionally cause cancer to spread, but in our real world as a practical matter, the biopsy is (currently) the only way to diagnose the disease, and therefore the very slight risk involved must be accepted.

 
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