Wife and I met with my urology doc yesterday to discuss treatment options. He referred to the NCCN Risk Classification/Treatment chart. I fall between the Very Low and Low risk categories. I'm not simply Very Low because the one core that contained cancer was 60%. According to the chart, if your life expectancy is less than 10 years, the treatment is observe only, 10-20 years is AS only. Greater than 20 years (that's me) is AS or treatment (RP, RT, etc.). I'm going to meet with the radiation oncologist next and also get a second opinion at UC Health (I'm in Colorado getting treated at TUCC). Side note: if anyone has experience with either of those facilities, I'd like to hear.
Although my doc was okay with AS (he leans towards RP), I'm really not a fan. There are a few reasons why. These are not scientific, these are my gut feelings based on common sense and I'm sure you'll poke holes in them. 1) With a life expectancy greater than 20 years, there's no way this cancer isn't going to get worse. You can tell me that a change in lifestyle and nutrition is going to keep it at bay. I don't believe it. 2) In my doc's personal experience 70% of his patients on AS are still on AS. Well, that's 30% that had to go on to treatment. That's a big number and that doesn't account for the status of the 70%--did they die from PCa? are they early in their AS protocol? Therefore, to me, a large percentage of men on AS will eventually need treatment anyway if they live long enough. Thinking about this another way, the whole POINT of AS is the assumption the cancer is going to get worse in the future, otherwise you wouldn't even do AS. 3) Every serious case of PCa that requires treatment (men still young enough) started off being a low risk case at some point in that man's life, whether it was identified at the time or not. I don't believe that a high risk case just popped on the scene as high risk from the start. Had a man diagnosed with high risk PCa acted earlier, when it was still a small tumor contained in the prostate, their prognosis would be vastly improved. 4) I ask myself this: "If I could take a pill that killed my PCa (guaranteed) but had no side effects, would I still opt for AS?" If I answer no (and I do), then I have to question the difference between this mythical treatment and reality: side effects. If I can live with the side effects then I should opt for treatment. 5) The reason (and I asked my doc this) why men end up with metastatic PCa years after RP, even with low and intermediate risk, is that cancer cells escaped before surgery and lay dormant. It only seems logical that the longer the cancer remains untreated with AS, the more chance a cancer cell has to escape the prostate. I've heard the argument, especially with biopsies, that a cancer cell doesn't "know" how to live outside the prostate. Well, obviously it "learns" somehow.
Bottom-line for me, the only way I would opt for active surveillance is if I could be guaranteed that future treatment will be just as effective in every respect as treating it now while I'm younger and the tumor is small. I don't think anyone would make that guarantee.
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tucker_man
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Hello, I consulted @ TUCC & UCH, ended up RP @ Urology Assoc in Lone Tree. You are doing your due diligence which is good. If I was to do over again I would have paid closer attention to perusing options outside RP. Stay your course and I hope you find resolution that feels right. Field any questions my way if you'd like.
You have summarized one of the big decision-making problems here. The USPSTF has become something of a bête noire--certainly among urologists. But I sympathize with their position--that the "harms" must be balanced against the benefits. IOW, you don't want the cure to be worse than the disease.
I could go on about my feelings about the USPSTF (but I won't). I will only say that there are difficulties when you try to make individual treatment decisions based on population-based studies.
I am inclined to agree with you that for young men like you with PC, surgery is likely a logical choice. But AS is not a cop-out, and it IS a legitimate course for low-risk patients. It was presented to my younger brother as a legitimate choice by no less than the then-chairman of urologic surgery at MSKCC--and he was not really a low risk patient (he wound up with a RP). I might consider myself "lucky" that I wasn't presented with the dilemma of being low risk, so I had surgery.
The main problem with AS when properly selected appears to be the anxiety related to it--as you are already discovering. But those of us who have had surgery sometimes are made to feel that we're cured, though cure is never guaranteed. In either case, followup is necessary, and a knowledge that there are no guarantees either way.
"1) With a life expectancy greater than 20 years, there's no way this cancer isn't going to get worse."
Yet, that's exactly what happens in more than half the men with your diagnosis. You are making an invalid assumption - that PC behaves like other cancers you heard about. Just not so.
"2)... That's a big number and that doesn't account for the status of the 70%--did they die from PCa? are they early in their AS protocol?"
No, of course they didn't die from PC. Neither are they early. He is telling you that 70% of is AS patients have NOT progressed to the point where they need treatment.
"2)... the whole POINT of AS is the assumption the cancer is going to get worse in the future, otherwise you wouldn't even do AS."
No - the whole point of AS is that (1) most men can permanently avoid the side effects of treatment, and that (2) nothing is lost by monitoring it actively and treating ONLY if there is evidence of progression.
"3) Every serious case of PCa that requires treatment (men still young enough) started off being a low risk case at some point in that man's life, whether it was identified at the time or not. I don't believe that a high risk case just popped on the scene as high risk from the start. Had a man diagnosed with high risk PCa acted earlier, when it was still a small tumor contained in the prostate, their prognosis would be vastly improved."
There is evidence that high grade PC starts out as high grade, that a common progenitor cell puts out both low grade and high grade cells. But even if there is progression, that is EXACTLY what AS is designed to detect early. Evidence is that AS always (97-99% of the time) catches the cancer before metastases occur.
"4) If I can live with the side effects then I should opt for treatment."
Quality of life is important. Why would any man in his right mind live with incontinence and impotence if he doesn't have to? Also, especially in the youngest men, QOL for their whole lives is worse for treatment:
"5) The reason (and I asked my doc this) why men end up with metastatic PCa years after RP, even with low and intermediate risk, is that cancer cells escaped before surgery and lay dormant. It only seems logical that the longer the cancer remains untreated with AS, the more chance a cancer cell has to escape the prostate."
The permanent cure rates for both RP and RT for low risk men is 97+% . The same percentage are free from metastases at 20 years with AS. (Intermediate risk men usually don't qualify for AS unless they have just a small amount of GS 3+4). There are some doctors who believe that GS 6 should not even be called cancer (I don't).
"5) Bottom-line for me, the only way I would opt for active surveillance is if I could be guaranteed that future treatment will be just as effective in every respect as treating it now while I'm younger and the tumor is small. I don't think anyone would make that guarantee."
Allen, I don't understand your citations. Your blog citation for #5 seems to support the fact that GS6 may actually be higher and that GS6 will progress higher. More reason to get treatment in my mind. Also that citation lacks any mention (that I could find) that 97% of AS patients are free from metastases at 20 years (does that mean they never had treatment also)? Please provide the study for this information. Could you also provide a reference to the claim that "they" guarantee? I appreciate your input, BTW.
While it is true that almost half of GS 6 will eventually need treatment. The converse is - more than half of all GS 6 will NEVER need treatment. How does one know which kind he has? That's easy -- he watches it closely with special biomarkers and biopsies. It has been found that this strategy (AS) works.
Lawrence Klotz started the longest running AS trial in North America. Here's his 25 year presentation with all the references you could ever want:
Similarly, MSK recently published 15 year results of their AS program. 56% remained treatment-free at 15 years (similar to Klotz). The cancer-specific survival was 100% ( 2 deaths in 3009 patients) and metastasis-free survival was 98% -- a nearly perfect safety record.
Continue to do your research and due diligence - looks as though you have plenty of time. As part of my decision making process (Gleason 3+4), I also met with a medical oncologist who had PCa experience to round out information I got from urologist and radiation oncologist. In addition to biopsy, I had an mpMRI, and also a Decipher geonomic test. In my case, the additional scan and test confirmed a more aggressive cancer and one that was on the verge of breaking out of the prostatic capsule. I ultimately chose surgery. Of course, you situation is quite different but the due diligence process remains the same. Good luck and good health!
It appears you are doing all the right things in evaluating what direction to head in. I don't mean to over simplify things, but it appears the argument for active surveillance comes down to this. If you were selecting a boat to cross the ocean and you were told 70 % of the time we make it without incident, but we have to watch the waterline, and if we begin to sink THEN we have to do something, and hopefully the damage is contained, but you have to start this process all over.....I'm taking a different boat. The decision on what path you take is so much larger than just which boat.
I can tell you each day my conditions improve significantly. I am down to a drip with an occassional, pressure induced, squirt after only 3 weeks. I will be dry soon. Little Jimmy feels everything but just can't stand up. I expect that to improve, especially after a PT session yesterday. But these conditions I anticipated and am dealing with. I am no longer dealing with a concern for prostate cancer and that is the most significant quality of life issue I was concerned about. No one but you has the full version of your life and family and your decision has to embrace all of that. Don't be bullied or distracted, just do your research, then step back for a moment to absorb it all, then decide on what is best for you and family, commit to that decision, and move forward. Good luck and God Bless!
I like Jgraber's analogy. My husband did not have the temperament to be able to keep watching the water line at age 52. He had RP, and is now cancer-free (i.e. no detectable PSA) 7 years but has complete ED. RP proved to be more challenging for him because of two previous inguinal hernias leaving complicating scar tissue in the area, and no technique for ED remediation worked. So go into it with your eyes open. Given that there were no surgical margins with my husband, but some cells were labeled as extra capsular extension towards the bladder neck, clearly surgery was the right thing to do. Post surgery also showed 4 + 3 instead of 3 + 4
Thanks, Cheryl. I'm sorry to hear about your husband's ED but I'm glad he's cancer free. I hear so often that post-op pathology discovers more severe cancer than what was found in biopsies. I'm paying attention to what the AS advocates are saying, but I can't help believe that the longer a cancer stays in your body, the higher the chance for metastasis and the likelihood there is worse cancer somewhere in the prostate than what biopsy shows. With my PSA already rising, and past 6 now, I can't imagine it's going to slow down, stop or reverse, which is the hope with AS. I still have two docs to meet with so I've made no decisions. I might choose AS for another year, but I'm leaning towards RT right now. The center I'm being treated at has an advanced VMAT machine, Elekta Versa HD which does IMRT, IGRT and SBRT. Doing RT rather than RP seems a prudent middle ground.
Postop may show higher stage of cancer, but all the guys I read about are like me: from Gleason 3+4 to 4+3. Both are semi-aggressive. You don't have that situation.
I did get a 3T MRI, which was used in the fusion biopsy. That's how they found the cancer that they did. Insurance won't pay for a PET scan unless there is reason to believe metastasis has occurred and I'm not at that stage. At least that's what I was told.
There are two flaws in your analysis (that I can see after a quick reading).
a) You assume that the 30% of the men who started on AS, and went off AS, "had to" be treated.
But some of those men (I remember a number of 10% per year, but don't quote me) met the requirements of AS, and _decided_ to be treated anyway. AS has one side-effect -- "anxiety" -- and men do sometimes say:
. . . "I'm tired of worrying -- just treat the g-d- tumor."
b) Cancer tumors develop when cells mutate into cancerous forms. That mutation is random.
A Gleason 6 tumor might have come from a single Gleason 6 cell, and might stay Gleason 6. Or, one of the cells in it might mutate into a Gleason 8 cell when it divides, and that Gleason 8 cell might take off into a serious (fast-growing) tumor.
Or a normal prostate cell might mutate into a Gleason 8 cell, when it divides.
You wrote:
>>>
3) Every serious case of PCa that requires treatment (men still young enough) started off being a low risk case at some point in that man's life, whether it was identified at the time or not. >>> I don't believe that a high risk case just popped on the scene as high risk from the start.<<< Had a man diagnosed with high risk PCa acted earlier, when it was still a small tumor contained in the prostate, their prognosis would be vastly improved.
<<<
The sentence:
. . . I don't believe that a high risk case just popped on the scene as high risk
. . . from the start.
is probably wrong (you may not believe it, but it happens).
_Some_ serious cases of PCa _didn't_ start off as "low-risk" (= low Gleason score) tumors -- they _started_ as "high-risk" (=high Gleason score) tumors.
I don't think any doc would let a Gleason 8 tumor go untreated -- you _don't_ "surveil" those, you kill them however you can.
There are people who think that Gleason 6 cells _never_ mutate into Gleason 8 cells. I suspect they're wrong -- that such mutations can, and do, happen.
You're right, though, in saying that _if_ you can accept the side-effects of treatment, you could reasonably choose to have treatment, rather than do AS. It's a cost-benefit analysis, that only you can do.
When I had surgery (11 years ago, age 62, for a Gleason 6 tumor with PSA doubling time of 18 months) I figured that I'd had a fairly long and varied sex life, and that I could accept ED as a side-effect of treatment. It was the "payment" for a greater-than-90% chance of being "cured".
I didn't expect a year of mild depression, when that happened. I felt a lot better after starting bi-mix injections.
Thanks for your well-thought-out reasoning, Tucker man! It is good to see a man taking control of his own health and not sitting back and letting the wife do all the work. That said, I would simply ask you a question: Considering the current low-risk cancer inside of you, are you really, really willing to put up with the traumatic side effects of RP--even nerve-sparing RALP? I had Gleason 3+4(7) in one biopsy specimen, expected life span of 10+ years, and elected to go with RP in 2017. Let me tell you this: the IMMEDIATE erectile dysfunction is radical. The whole appearance and behavior of the penis changes. It shrinks, it doesn't care about sex, it won't respond to ED drugs. And that was nerve-sparing. Fortunately, after about 14 months, it began responding to Viagra, and now I can get a good, if short-lasting, erection. Also there is the incontinence, which in my case lasted about 2-3 months.
I was like you, thinking that the ED is no big deal--just get rid of the cancer and the prostate itself. In reality it WAS a big deal (though I am glad I did it in my case). You are still low-risk. Why not keep with AS, get an annual biopsy, regular PSA tests, and so forth. Being on AS you can still catch the cancer while it is limited to the prostate but has become more aggressive, say a Gleason 7. I don't know how important the sex part is to you (it is very important to every man I know), but consider this carefully before you go ahead and have the RALP! It will change your life, and not for the better--which is fine if you have a GS like mine--life is better than death.
You ask for "guarantees." There are none. I think it may just be too soon to go with radical, invasive treatment just now. I would not if I were in your shoes. But it's your choice, and you are doing due diligence in your care. I laud you for that, and hope for the best for you.
As my wife has said, my ED is permanent. I am glad that some people find stabbing your penis with a needle as you do with tri mix is sexually satisfying. I did not. All ED treatments take PLANNING. That is diametrically opposed to spontaneous. Also, it not as if I cannot get any blood into my penis, I just cannot get it to stay. And it never gets as hard as it used to naturally, even with tri mix. Orgasms still happen. Just not too often or the law of diminishing returns rears its ugly head. Then there are toys that you use to play with each other. It was extrememly frustrating for me because there was no longer any guarantee that an orgasm would happen. This actually started to happen just after I turned 50 which is a couple of years before RP.
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