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  • PSA at 5.3, then dropping

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    Old 10-19-2019, 01:56 PM   #16
    IADT3since2000
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    Re: PSA at 5.3, then dropping

    Hi again, and I hope you get other responses.

    There is a reason the insurance won't pay for HIFU: as far as I have seen based on research, compared to radiation and surgery, HIFU is just not competitive (except at one center in Japan that uses a set of special technologies with HIFU) in either effectiveness or side effects for radiation, and in effectiveness for surgery. Basically, many HIFU patients also need a TURP, they pay a lot out of pocket, and then, sometimes after paying for an additional HIFU and have an additional recurrence, they finally get to a proven therapy that does the job. However, at that point there is likely to be a combined burden of side effects that is boosted by an unfavorable synergy of side effects from each therapy.

    Good luck thinking this through. Remember that you can do your own research on PubMed, www.pubmed.gov, with search strings like - prostate cancer AND radiation - tailored with filters and additional search words and phrases.

     
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    Old 10-22-2019, 08:45 PM   #17
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    Re: PSA at 5.3, then dropping

    Quote:
    Originally Posted by IADT3since2000 View Post
    Remember that you can do your own research on PubMed, www.pubmed.gov, with search strings like - prostate cancer AND radiation - tailored with filters and additional search words and phrases.
    Yes, very helpful!!!

    I saw the surgeon and the radiation oncologist yesterday.

    The surgeon was great, I have a lot of confidence in him. He's done over 2,000 robotic prostatectomy's. Says 85% maintain erectile function and 95% have no incontinence.

    The radiation oncologist was very good too. He was recommending either the HDR Brachytherapy with the tubes inserted into the prostate for 2 treatments and the SBRT (EOD for 5 days total).

    It's a lot to think about. I like the fact that with either radiation treatment you don't have the incontinence or ED issue. He also uses the SpaceOAR gel to protect the rectum. He seems to think if the radiation doesn't work you CAN have surgery, which was the opposite of what I've been reading.

     
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    Old 10-23-2019, 08:32 AM   #18
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    Re: PSA at 5.3, then dropping

    You are making a lot of progress!

    Surgery after radiation is definitely possible if needed, at least for some patients, but should be done by a really expert surgeon.

    However, these days, radiation is at least as good as surgery at wiping out cancer in the prostate and wherever surgery can reach, so, unlike the old days, salvage surgery should not be needed.

    Either form of radiation proposed should be effective. My understanding is that the SBRT course of 5 treatments is usually delivered with a day between treatments ("EOD" meaning Every Other Day?). Is that what the radiation oncologist outlined for you for that option?

    Last edited by IADT3since2000; 10-23-2019 at 08:34 AM. Reason: Minor

     
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    Old 10-23-2019, 08:53 AM   #19
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    Re: PSA at 5.3, then dropping

    Yes, every other day, m,w,f,m,w.

    How long ago did you have radiation treatment and what type did you have. What was your Gleason score?

    What can you tell me about the process?

    I hope you don't mind all the questions.

     
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    Old 10-23-2019, 02:25 PM   #20
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    Re: PSA at 5.3, then dropping

    Quote:
    Originally Posted by IADT3since2000 View Post
    Surgery after radiation is definitely possible if needed, at least for some patients, but should be done by a really expert surgeon.
    If I understand this correctly, most of the damage from the radiation is on the rectum. This comes from the inflammation that forms the scar tissue between the rectum and prostate, where there is normally fatty tissue. This makes the surgery harder because it changes the margins.

    This doctor says the high dose brachytherapy that he uses (2 treatments, 1 week apart) is very low toxicity on the rectum with OR without the spaceOAR gel.

    He does use the spaceOAR gel, not so much for the toxicity issue, but for the barrier that it creates to keep the inflammation from damaging the rectum after the radiation.

     
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    Old 10-26-2019, 09:46 AM   #21
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    Re: PSA at 5.3, then dropping

    Hi again.

    Your learning is on track and focused where it should be, in my view.

    I am now at the 6 1/2 year point since having the external beam form of radiation (the TomoTherapy version). Advances in imaging and radiation delivery have resulted in very low rates of most side effects , but often there is some limited exposure of the rectum. I have experienced that. I have excellent control and minimal inconvenience, but I do have to avoid delay at three regular times in the day. Let's also say that constipation is not a problem.

    The SpaceOAR gel is a nice advance and should further decrease the already low-level rectal side effects. I was aware of it, but it was still investigational when I was radiated, and many radiation oncologists, including mine, were aware of it but not yet convinced enough, back in 2013, to use it. If I were doing this in 2019 instead of 2013, I would want the SpaceOAR gel.

    Thanks for describing your doctor's thinking. That point about minimizing the impact of inflammation is interesting and new to me.

     
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    Old 10-26-2019, 10:54 AM   #22
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    Re: PSA at 5.3, then dropping

    If you started a thread outlining your procedure please point me to it.

    If not, I'm curious can you share with me your initial diagnosis , with your PSA, biopsy results, Gleason score and the cores that were taken.

     
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    Old 10-26-2019, 02:30 PM   #23
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    Re: PSA at 5.3, then dropping

    Hi again,

    I have described some details of my experience a number of times, but it’s probably easier to just give you a fresh summary. My story is probably not unique, but pretty close, as most patients with serious prostate cancer go for a cure shortly after diagnosis, and, after some twists, I chose not to do that. I did initially decide on surgery early in 2000, but fortunately was rejected by a major mid-Atlantic center known for prostate cancer surgery as they did not think surgery would help me and would just leave me with side effects without justifying benefit. That rejection, and learning a lot more about the disease and its treatment, helped me choose to take my chances on holding the fort with ADT with the hope that radiation technology might improve someday in time to help me before ADT would no longer hold the cancer in check. (ADT worked for fourteen years and was still working when I had radiation.)

    Technology has improved so much since I was diagnosed in 1999. If I had been diagnosed with similar case characteristics today, imaging and other tests would probably quickly show that radiation, with a good shot at a cure, would be the way to go, though fourteen years of intermittent ADT plus supportive therapy may have played a key role in softening up my once aggressive and life-threatening cancer. All this is a long way of saying that my experience may not be very useful for you.

    In early December 1999 I got my first ever, age 56, PSA result of 113.6. The biopsy soon after that showed a Gleason 4+3=7 cancer, assessed by an expert pathologist known worldwide, with all 6 biopsy cores positive, most 100% cancer. The DREs indicated a stage 3 cancer. Subsequent information over the years indicated a likely cancer doubling time of just 3 to 4 months. This set of characteristics indicated a clearly life-threatening case. Experts at well-known mid-Atlantic and LA area institutions gave me a prognosis of 3 good years followed by 2 declining years. (I was actually encouraged because my wife and I were fearful that I would have a lot less time than that.)

    Back in the early 2000s radiation, either external beam or seeds, had its problems for patients with challenging cases like mine. In essence, radiation oncologists were unable to deliver high enough doses for such patients unless they were willing to do substantial harm to important tissues, like the bladder and rectum. Advances in imaging, targeting, aiming, planning, and ADT in support led to great improvement in radiation’s ability to wipe out cancer with no or minimal harm to surrounding important organs. I was watching closely and decided to take my shot with imaging and tests in 2011 and 2012, following with radiation in 2013. I really did not hope for a cure until about 2012. My recent PSAs have all been less than 0.01, which is remarkably low after radiation for someone who still has an intact (but radiated) prostate, and the PSAs, plus my other labs and exams, suggest that I have been cured.

    While my experience obviously is not directly comparable to yours, at least it shows that radiation plus ADT can put serious prostate cancer in the likely cured column and should work at least as well for a less challenging case. These days, it seems wise to add metformin to the radiation/ADT plan, but that has not yet been conclusively established.

    I hope this helps.

     
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    Old 10-28-2019, 08:17 PM   #24
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    Re: PSA at 5.3, then dropping

    Thanks for the detailed information!

    How tough was being on ADT for 14 years?

    I'm leaning towards the HDR Brachytherapy, but haven't ruled out surgery. Head is spinning with an overload of information.

    Going to a support group on Thursday that also has a professional (MD) speak, so hopefully that will give some insight.

    Will keep you posted.

     
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    Old 11-05-2019, 04:22 PM   #25
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    Re: PSA at 5.3, then dropping

    Got my 2nd opinion results back today, I need to call pathologist tomorrow for clarification because there was no Gleason Score on the results.

    In the original results 6/15 cores were positive, 4 ea 3+3, 2 ea 4+3, you can see there's a slight difference in the 2nd opinion.

    I hope this is enough information regarding the comparisons. Two different facilities two completely different types of reports.

    Comparison

    1st-------------2nd

    3+3 25% --- 3+3 20%
    4+3 40% --- 3+4 30% - 10% Gleason pattern 4
    3+3 40% --- 3+3 40%
    3+3 20% --- 3+3 10%
    4+3 20% --- 4+3 20% - 70% Gleason pattern 4
    3+3 20% --- 3+3 20%

    Let me know what you think...

     
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    Old 11-06-2019, 01:46 PM   #26
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    Re: PSA at 5.3, then dropping

    Talked to the world renown expert pathologist today regarding my second opinion. He said the difference in the results were small and still warranted surgery or radiation. I asked him what he would do if it was him and he said surgery over radiation. He said the radiation leaves to much scar tissue and it makes it difficult to remove the prostate. I specifically asked about the HDR Brachytherapy with the spaceOAR gel protecting the rectum and he said it doesn't matter. He said, the sugeons at John Hopkins won't do surgery if you've had radiation.

    I asked what the Gleason score would be since it wasn't on the second opinion and he said he doesn't believe in the Gleason score. I guess that's why he created the Epstein Grading system.

    I'm still leaning towards radiation, but more concerned.

     
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    Old 11-06-2019, 02:09 PM   #27
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    Re: PSA at 5.3, then dropping

    Hi again,

    Your results in your 6:22 pm post of 11/5 open up some options that are interesting for me as an outside observer but perhaps frustrating for you as you may need to put in more effort to think through the issues and work out strategy options with doctors.

    Both sets of scores are in the same ballpark, but that second set definitely lowers the risk a bit. Overall, the two opinions, especially the expert opinion, indicate a highly treatable prostate cancer with outstanding survival prognosis, thereby making forecasts of side effects the major factor in choosing a therapy.

    My bottom line is that that fifth core with a 4+3=7 (unfavorable intermediate-risk GS-7)and 70% for the Gleason grade 4, plus the existence of one other but favorable intermediate-risk GS-7 core and six cores positive for prostate cancer overall would lead to a short time on active surveillance before treatment if that route were taken. That argues against active surveillance and in favor of treatment.

    On the other hand, the percentage of cancer in each core is under 50%, most well under 50%, with only that one 4+3=7 70% GG4 core as a likely short-term trouble maker. Depending on the locations of the cores, especially that one problematic core, you might want to consider an unorthodox approach: focal therapy to wipe out that one core and perhaps other nearby cores. In essence, focal therapy treats just part of the prostate. If focal therapy were successful, you would have minimal if any side effects and perhaps could coast a long time or for the rest of your life on an active surveillance type program. Focal therapy is well accepted in some countries, such as the UK; my impression is that is not yet practiced very widely in the US though probably available in some areas, but some US patients go to the UK and elsewhere for focal therapy. Focal therapy could use HIFU (which is generally not a good bet for treating the whole gland, though with at least one exception, in Japan), cryotherapy, electroporation, or even, perhaps, radiation. This would also allow you to do radiation (or surgery) later. It would also give more time for technology to improve, such as providing knowledge whether use of mild supportive drugs (e.g., Proscar/finasteride, Avodart/dutasteride, and/or metformin and supplements/life-style tactics) will greatly or indefinitely extend the period without needing therapy.

    One other unorthodox approach would be to try a one-time (hopefully) course of ADT. When I was first diagnosed, one doctor in California was enthusiastic about a one-time course of triple ADT followed by a mild drug as maintenance. He would put patients on ADT3 (usually Lupron, Casodex, and Proscar, with Avodart now looking like a superior substitute for Proscar for most but not all men) for 13 months, and then stop the heavy duty drugs and have them continue with Proscar indefinitely. He and a colleague published their results in a journal, and he has also published encouraging results informally. Many of his patients had the kinds of mild cases that are these days best managed with active surveillance, so it is no surprise, looking back from 2019, that they did well. But he also had some intermediate risk patients who did very well. Personally, I believe that approach might work very well for you, but one obstacle is that there has been no good follow-up research published by anyone else to put that approach to the test. It might be hard to find a doctor who would be willing to manage that program, though I know of at least one. I can provide more information if you are interested.

    HDR brachytherapy would be a standard-of-practice option for your case, as would other types of radiation or surgery. All would most likely give you an excellent result cancer wise, very likely a cure, but there would probably be some side effects, with a likely small and very tolerable side effect burden for radiation, and a larger but likely tolerable burden for surgery, in my layman’s opinion.

    Your other post that asks about ADT relates to this, but I’ll respond to that under the other thread.

     
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    Old 11-06-2019, 02:15 PM   #28
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    Re: PSA at 5.3, then dropping

    You asked in your 10:17 pm post on 10/28 about how tough it was being on ADT for 14 years. A key point is that I was on ADT intermittently, with lengthy vacations during those years. I was able to recover from side effects more-or-less fully after 3 to 6 months from stopping the heavy duty drugs. My schedule of ADT cycles is this:

    First cycle, on ADT3 for 31 months, vacation for the next 34 months (My testosterone recovered to over 1,000, a very high level.)

    Second cycle, on ADT for 19 months, vacation for 21 months

    Third cycle, on ADT for 19 months, off for 29 ˝ months (used higher restart trigger because I was anticipating radiation and knew I responded well to ADT)

    Fourth cycle, on ADT for 18 months overlapping radiation, with only the maintenance drug after stopping the heavy duty drugs in 2014, continuing to the present as a shield against recurrence.

    The most serious side effect was one I was aware of only due to imagery: a near certainty of decreased bone mineral density unless that risk was countered with medication and lifestyle. The countermeasures are highly effective.

    The most intrusive side effect was hot flashes and sweats, but, after countermeasures including fans and supplements, this side effect was a minor burden, quite tolerable. The flashes/sweats decreased to barely noticeable as I got older. Some patients need drugs as more potent countermeasures, but many do not.

    The most regrettable side effect for me and most of us is that ADT decreases your sex drive to near zero and causes at least some ED. There are countermeasures, but my impression is that many of us will become monks while we are on ADT and for a few months after stopping ADT. The good news is that the vast majority of us, unless we are elderly, will recover both drive and erectile function after stopping ADT.

    Weight gain and a decrease in muscle mass are also typical side effects. I learned how to counter both and did so successfully, especially during the fourth round, but it takes work – working out and watching what you eat.

    There are at least two books that are excellent on ADT and how to counter side effects. In recent years, research has shown that the old, tried-and-true diabetes drug metformin helps patients avoid or blunt some of the side effects of ADT, including weight gain, BMI increase, increase in systolic blood pressure, and metabolic syndrome. Metformin also is looking highly promising in support of radiation (though not yet proven by trial results), so it is a twofer. There are some other less common side effects that I did not experience, but the books have good information about them and how to deal with them.

    I have heard experts in ADT state that about 90% of their patients have some side effect burden, but 10% get full benefit with no side effects.

    I can provide references to studies to support these points if you want them.

    Good luck!

     
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    Old 11-06-2019, 04:51 PM   #29
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    Re: PSA at 5.3, then dropping

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi again, Your results in your 6:22 pm post of 11/5 open up some options that are interesting for me as an outside observer but perhaps frustrating for you as you may need to put in more effort to think through the issues and work out strategy options with doctors.
    More work yes, but I'm ok with that!

    Quote:
    Originally Posted by IADT3since2000 View Post
    Both sets of scores are in the same ballpark, but that second set definitely lowers the risk a bit. Overall, the two opinions, especially the expert opinion, indicate a highly treatable prostate cancer with outstanding survival prognosis, thereby making forecasts of side effects the major factor in choosing a therapy.
    Yes, this is the hard part!

    Quote:
    Originally Posted by IADT3since2000 View Post
    Depending on the locations of the cores, especially that one problematic core, you might want to consider an unorthodox approach:
    The problematic 4+3 is located Target Right posterolateral peripheral midgland. The 3+4 is located Left Lateral Apex

    Quote:
    Originally Posted by IADT3since2000 View Post
    focal therapy to wipe out that one core and perhaps other nearby cores.
    I posed that question to my Urologist and this was his fellow's answer: The concern is that there is clinically significant prostate cancer on both sides of the gland (left and right). Focal therapy (HIFU) aims to only treat one side of the gland. Therefore, you may be better suited for prostatectomy or radiation.

    Quote:
    Originally Posted by IADT3since2000 View Post
    One other unorthodox approach would be to try a one-time (hopefully) course of ADT.
    I'm certainly interested in this approach. It would be great if you could provide a name. You can also name the books if you can, even though it would be some time before I could get to them.

    Quote:
    Originally Posted by IADT3since2000 View Post
    HDR brachytherapy would be a standard-of-practice option for your case, as would other types of radiation or surgery.
    I'm seriously considering HDR Brachytherapy, but need more info on the ED issues that reportedly start 2 years after treatment and decline from there.

    Thanks for your great explanations!

     
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    Old 11-08-2019, 01:54 PM   #30
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    Re: PSA at 5.3, then dropping

    Hi again. I'm responding to your conversation with the pathologist that you posted about on November 6 at 3:46 pm

    You are doing a super job of getting educated so you can take your shot!

    Regarding the pathologist’s preference for surgery, my hunch is that this pathologist has spent a great career working mostly with surgeons at an institution that is renowned for surgery. After all, pathologists always review the prostate after removal by surgery, but they do not usually have a role in reviewing treatment by radiation. I took a look at www.pubmed.gov for published papers for which one famous pathologist who specializes in prostate cancer was an author. I used this string for surgery - prostate cancer AND [his last name and first initial ][au] AND surgery -, which resulted in 474 hits. I then did the same but substituted “radiation” for “surgery” and got 46 hits; that is still a lot, but you can see where he spends most of his time.

    One thing I have learned is that prostate cancer experts are often not experts outside of their own areas of focus. I suspect that this brilliant pathologist has not kept up with advances in radiation therapy. These days, while radiation would still create scar tissue making it difficult (but not impossible) to remove the prostate by surgery later, radiation, guided by imagery and supported appropriately by ADT if needed, etc., is at least as good at wiping out cancer in the prostate as surgery, so it is very unlikely that a radiated prostate would need to be removed. From your posts, I’m thinking you are thinking the same thing.

     
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