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Good evening!  There has been quite a bit of news coverage surrounding prostate cancer over the last few months.  As with all cancers, there are many specific issues to PCa, and it can be very daunting when a diagnosis comes your way.  Also, like all cancers, besides having to deal with the emotional aspects of the diagnosis, the patient is suddenly cast into the role of having to research and educate himself about the disease, and this process can cause anxiety, frustration and can frequently be overwhelming.  This is particularly true for the PCa patient and his loved ones, because the course of action is not necessarily clear, or similar, for everyone.  In fact, the options presented depend a great deal on the pathology of the diagnosis, the age at diagnosis and one's own priorities and life situation.  The intent of my diary tonight is to tell my own story over the last 18 months since my diagnosis as a lens through which to view and discuss some of the current issues that have been in the news, including the option not to treat and the relation of the PSA (prostate-specific antigen) test to diagnosis and monitoring.  

I hope that we can have a good discussion tonight.  I am not a medical professional, and of course I don't pretend to have definitive answers for anyone, but I think it will be useful to have a discussion and hope that the diary can shed light on the differing points of view.  I'll be here until I need to go to sleep to participate in the discussion.  Come with me below to read my story.  

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Conventional wisdom about prostate cancer used to be that it was "an old man's disease."  We've all heard stories about the symptoms of prostate trouble, typically associated with an enlarged prostate and urination problems. You may have even seen  this dubious commercial with Joe Theismann that kind of sums up the way I used to think of prostate problems.  When my doctor added a PSA screening test to my bloodwork when I turned 50, I didn't think anything of it, as I had no symptoms.  It was, at that time, a pretty routine blood test screening that began for most men at age 50, or earlier if there is a family history.

However, the picture became controversial in May, 2012 - coincidentally, the same month I was officially diagnosed.  The US Preventative Services Task Force, who advise Congress and governmental bodies what to advise the general public regarding preventative services, came out against PSA screening for all men, regardless of age.  The reasons for this recommendation are rooted in studies like this one that concludes that surgery to remove the prostate has no significant impact on survival.  But I was only 50 when diagnosed, and most of these studies concerned older men - could I live for 25 years or longer without treatment?  There were no answers.  Because the PSA test has only been in widespread use for 20-25 years, there are literally no long-term studies on younger men with prostate cancer.  I found nothing that I could relate to in terms of reliable data for men in my situation.

I was furious with this recommendation.  As an intelligent person, I want knowledge about my body and my health.  When my cancer was indicated by the PSA test, and then confirmed by subsequent biopsies, I was certainly shaken, but craved all the data and knowledge I could get my hands on to make an informed decision about my course of treatment.  But prostate cancer can be a deceptive diagnosis - along with your diagnosis, indicating the frequency and size of the tumors observed in the biopsy, the pathology of the cancer is also staged like most cancers, but using a prostate cancer specific score called a Gleason score.  Generally, on a scale of 1-10, scores of 6 or below are considered non-agressive cancers.  I was scored at 6.

My urologist recommended immediate removal of my prostate.  Statistics are hard to pin down, but in general, removal of the prostate leads to incontinence and impotence in a large percentage of men.  What I was hearing from my doctors was hopeful...if you are healthy, your chance of avoiding incontinence and impotence is greater than if you are less healthy.  But I didn't like the odds.  Even if there was a 20 or 30% chance of me winding up with these conditions, this seemed too great a price for something that might not ever kill me.  So i did more reading... a lot more.

What I discovered was an option that is increasingly being considered by many men, called Active Surveillance, or "watchful waiting".  I prefer "active surveillance" - "watchful waiting" to me sounds like bad news is inevitable, and it is not.  This approach began with older men for whom it was an easier call that the prostate cancer within them would not kill them.  But for younger men, the recommendation was too risky, I was told.  Specifically, my doctor told me that for men with a life expectancy of more than 10 years, radical prostatectomy was the "gold standard' of treatment.  Well, I certainly expect to live to age 60, but I felt it was premature to submit to the surgery, given the odds on the side effects.  My urologist was, shall we say, concerned at my attitude.

There is another option for treatment - radiation of the prostate, either externally or through implantation of radioactive implants in the prostate, called brachytherapy.  Basically, radiation of the prostate winds up killing the entire prostate, and sometimes surrounding tissue.  The end effect is the same in terms of long term prostate function. For some older men, this is a viable option, but for younger men this is not recommended.  Particularly in my case, as I have a family history of colon cancer, radiation leaves scar tissue in the groin area that can complicate or even preclude future necessary surgeries for colon or other cancers in the region.

So where am I today?  Active surveillance involves quarterly PSA testing and annual biopsies (or less frequently, depending on the PSA monitoring.)  My last test in August was the lowest PSA test score of them all.  The test is not very precise, and tends to bounce around, in my case.  I have ranged from 3.7 at the time of my diagnosis, to 4.2 at its highest, to 3.0 in August, my lowest score.  This is a bit unsettling, but even my urologist now agrees with my choice of active surveillance.  I could go years without surgery, and in the mean time, I can live a life free of the debilitation of having my prostate removed.  And if I do see an uptick in my score, or my biopsy indicates a spread or a higher Gleason score, I can then make that decision.

I am perfectly able to evaluate pros and cons regarding my condition, and I prefer to be in control of my own health care.  That's what this diary boils down to.  This recommendation by the USPSTF takes choices away from younger men who may have prostate cancer.  If you are not screened, you will not know, and that can indeed save younger men from a premature removal of the prostate.  But it also prevents you from knowing.  When I was diagnosed, I talked to men my age that I knew through family and friends who opted for immediate removal.  When I asked them "why?", they responded with incredulity.  "Why would you NOT?"  Well, the answer is because there is a lot to lose, and sometimes little to gain, by an emotional response to prostate cancer.  Sometimes, the PSA test and the resulting biopsy saves your life.   And sometimes, the PSA test will cause you to take away big parts of your life for no reason.  It's a cancer fraught with uncertainty, uncommon choices and the need to be engaged.  But I believe everyone has the right to knowledge and choice, and for that reason, I decry the USPSTF recommendation, because for younger men with prostate cancer, it deprives them of knowledge, and choice.

There are hopeful signs that radical prostatectomy is not the only way.  Targeted focal therapy, or addressing the cancer without removing the entire prostate is a promising field that I hope one day replaces the current "gold standard" of radical prostatectomy.  In the  meantime, I recommend reading "Early Detection and Screening" on the Prostate Cancer Foundation's website.

I wrote this hoping there may be men in the DKos community who are struggling with this  issue...either whether to be tested, or what do do after the PSA test and biopsy.  The choices are not clear, and communication and community can help.  I also want to hear from anyone who has had treatment - your feelings about your treatment, how you are doing and what your advice is for those wrestling with treatment options.  You are our future, and your experiences and opinions will be invaluable.  

I'll be here until I need to sleep, usually around midnight on the left coast.  I look forward to the discussion tonight - thanks to all in advance.  

Originally posted to Monday Night Cancer Club on Mon Oct 21, 2013 at 04:30 PM PDT.

Also republished by Community Spotlight.

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Comment Preferences

  •  I was deliberately brief tonight (35+ / 0-)

    There are a lot of nuances not discussed in the diary, which I hope come out in everyone's comments tonight. To wit:

     - the decision making process of a young(er) man faced with removal of the prostate,
     - the impact on sex and incontinence.  Is "buying time" a viable option for young(er) men?
     - The impact of insurance coverage.  If you are covered now, is it better to opt for prostatectomy if you face a possible financial impact later for surgery?  
     - How does the ACA fit in with your decision?
     - How does life expectancy and age impact the decision to opt for radiation over prostatectomy?
     - How do you have these discussions with your doctor if they are not receptive to active surveillance?
     - Where does the research stand?  Alan Grayson tried to divert $10M from the defense bill this summer to fund PCa research.

    I'm sure there are others, the point is discussion and more discussion to help individuals deal with the process.

    "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

    by outragedinSF on Wed Oct 16, 2013 at 01:14:16 AM PDT

  •  Thanks for your thoughtful diary, outraged. (14+ / 0-)

    It is long past time for us to have an extended discussion of prostate cancer as part of the MNCC, and I am grateful to you for getting this installment started. Welcome to the roster of MNCC diarists!

    May I ask you, when you had a PSA of 3.7, what prompted further inquiry? My understanding (which may be wrong) was that anything below 4.0 was considered normal. Was your relatively young age, 50, an element in the decision to investigate further? You stated above that you had no symptoms.

    I don't want to be too disclosing, but this very issue is a live one for my family at this moment, so your diary is extremely timely for me personally. Thanks again.

    I'm going to head back up and check out a couple of your links, but I'm definitely here.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Oct 21, 2013 at 04:56:18 PM PDT

  •  Question regarding chemo ~ (7+ / 0-)

    I agree with you being proactive with your health and I fully appreciate the Active Surveillance route.  I also understand not going the radiation route given your family history with colon cancer. However, is there a chemo route you could take?

    Knowing nothing about prostate cancer, I was just wondering if there wasn't an aspect of treatment, i.e. chemo, you could use that could maybe help long term prognosis.

    •  Another good question (8+ / 0-)

      I don't believe chemo is considered, at least while the cancer is confined to the prostate itself.  None of my doctors (primary care, urologist, radiologist) ever mentioned chemo as an option, nor do any of the sources I've researched.  I think (again, I'm not an expert) if the cancer metastasizes, then there might be a chemo discussion.  Frequently, PCa metastasizes to the bones and/or the vas deferens.  Once the cancer has metastasized, it's a much different conversation.  But as long as a slow-growing cancer is contained in the envelope of the prostate itself, I don't believe chemo is indicated.

      This brings up a different topic that I have seen discussed and read a couple of articles on.  There is some discussion to reclassify some types of tumors (including non-aggressive PCa) as something other than "cancer."  Cancer to many means by definition that it spreads, and requires immediate, aggressive treatment (such as chemo.)  Because of patient expectations, there are now discussions that perhaps a tumor that will not advance for years, if ever, should be called something else, precisely because it is hard to have a discussion with those diagnosed that doesn't involve immediate, invasive treatment.  I think there is something to this idea.

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Mon Oct 21, 2013 at 05:44:08 PM PDT

      [ Parent ]

  •  My father-in-law (at that time) died of PCa (8+ / 0-)

    in 1993, 18 months after he was diagnosed with it, at Stage IV. He had a very hard and fast decline, considering how vigorous and young he was--only 63 when he died.

    Looking back, I am a bit surprised that his condition wasn't detected earlier. I may be misremembering, but I thought the PSA was just coming into common use in the early 1990s, that is, after his diagnosis. And back then, when the PSA was first available, it was indeed promoted to be a valuable screening tool with the potential to save thousands of lives.

    As with so many other "breakthrough" developments about cancer, that promise has been illusory. I think, after reading your diary and following up on some of your links, that I would agree with your ultimate conclusion: it's better in the end to be informed to the greatest degree possible, and to be able to make one's best decision.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Oct 21, 2013 at 06:16:59 PM PDT

  •  Now that I've followed some of your links, (7+ / 0-)

    I'm even more impressed (and grateful). You've packed a lot of information into this diary, if people choose to investigate.

    How did you manage to get your urologist to come around to support your position?

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Oct 21, 2013 at 06:19:34 PM PDT

    •  It was a bit of a tussle, and I can be stubborn ;) (9+ / 0-)

      I really need to be convinced, unequivocally, on taking radical action.  It happens that my partner has an uncle, in his late 80's now, who has been living with PCa ever since I've known him, for over twenty years.  So I knew first hand someone for whom PCa was not necessarily a call for radical prostatectomy.

      My urologist is a smart guy, and was a fellow at MD Anderson, which, as I'm sure you know, is one of the foremost cancer centers in the country.  One of the nuances I haven't mentioned is that my biopsy indicated four separate areas of cancer in my prostate, but each one was approximately 1mm, and all were assessed at a Gleason 6.  He was following his training, in that active surveillance is generally only recommended when there is a single instance in the biopsy, with a 6 or lower.  Multiple occurrences, in a younger man, to him, meant that eventually you would need to remove the gland, so remove it now.

      I was not sold.  Just because I had multiple instances, they were very small, and represented <2% of the total cores they took out of my prostate, so there was not any indication that most of my prostate was involved.  So we discussed it.  He basically agreed that I was borderline in terms of his recommendation, and sided with my reasoning.  He is also a young man, in his 30's.  I think he comisserated with me that a young man might have trade offs that are legitimate.  If I have 5- 10 good years with my prostate, why yank the whole thing now?  You will see in all of the links in my diary that "quality of life" considerations are a legitimate part of the decision.

      Very, very nuanced is this disease.

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Mon Oct 21, 2013 at 06:56:42 PM PDT

      [ Parent ]

  •  This is very informative (6+ / 0-)

    I confess I don't know a lot about prostate cancer, so this is very helpful and I'll be sharing it with my 61yo spouse. Thank you.

    I admire your clear-eyed search for all the facts about your health and wish you all the best.

    •  OT: I'll be away (6+ / 0-)

      for a few weeks. I hope to stop in next Monday but may be frantically packing. Otherwise I'll see you all after mid-Nov. Wishes for healing and health to all here.

    •  Thanks, lunacat (6+ / 0-)

      We tend to think that health care in the 21st century should all be figured out by now.  One of my discoveries at diagnosis was just how much ambiguity there is surrounding PCa, and how many differing views there are, right up to the recommendation NOT to screen, so as to save everybody the trouble of actually DEALING with prostate cancer.  It kind of astounded me.

      Glad to hear you are sharing with your spouse...he'll be grateful, I'm sure!

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Mon Oct 21, 2013 at 07:05:13 PM PDT

      [ Parent ]

      •  Not screening ... (4+ / 0-)

        simply to save trouble seems a little odd because surely a doctor should be able to effectively communicate what is and isn't of concern.

        I think Dennis has been getting screened for almost 10 years with consistent low readings.

        •  Totally agreed! (4+ / 0-)

          And yet, our own government is supporting the call to stop screening.  I think it is paternalistic, and not in a good way.  Like they are patting us on the head and telling us not to worry about our own status, that they know better.  In the aggregate, that is probably true, but not screening prevents people who actually HAVE cancer from knowing.  It is infuriating to me.

          "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

          by outragedinSF on Mon Oct 21, 2013 at 07:24:55 PM PDT

          [ Parent ]

          •  My understanding was that the numbers of positives (5+ / 0-)

            didn't support the side effects of testing (which you mentioned up above) plus the chance of unnecessary treatment.

            That it was safer for the patient to not be tested.

            And that has been the same with mammograms. I believe they have moved the number up (the age at which you begin to get tested) and decreased frequency.

            Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

            by ZenTrainer on Mon Oct 21, 2013 at 08:16:43 PM PDT

            [ Parent ]

            •  This is exactly the issue, you state it perfectly. (5+ / 0-)

              It is safer, statistically, in the aggregate, not to test.  The problem isn't so much in the PSA test, which is simply a blood draw.  It isn't really in the biopsy, either, although there are statistically small amounts of infection or other side effects.  

              My concern is that there are few data regarding younger men with prostate cancer.  The aggregate statisticsare often quoted.  But inherent in these statistics, and where there is precious little data, is what if you are not 70+?  What if you are 45?  What is the life expectancy of the young(er) man who is diagnosed?  You can't find those statistics...most of the mortality studies are 10 year studies, and certainly these studies don't really help the 45, 50 or even 60 year old man who is diagnosed.

              I am hoping there are ongoing studies to determine some statistics for younger men who are diagnosed with low stage, low Gleason cancer.  These are the studies we need to help with the decision making process.  In the meantime, I would hope screening would continue, coupled with accurate and informative discussion with doctors to tell younger men that we can continue to monitor in the near-term.  But not screening to me seems to be turning a blind eye to the non-trivial number of 50-60 year old men who might have an aggressive cancer, or for whom their Gleason scores might change.  We don't know, for instance, how many cancers have a Gleason score that increases over time.

              My apologies if I seem strident...I don't mean to.  I just feel passionately that discontinuing screening for all men is a bad recommendation.

              "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

              by outragedinSF on Mon Oct 21, 2013 at 08:41:20 PM PDT

              [ Parent ]

          •  That's not really a fair description of USPMTF. (5+ / 0-)

            They are charged with a purely statistical analysis of outcomes based on screening test used. The process that leads to the outcomes isn't included (e.g. - what Gleason Score to do brachytherapy in what age to produce better outcomes.) That would be micromanaging to USPMTF.

            Additionally, their guidelines reflected the uncertainty of the data, beginning with a recommendation from several years ago that physicians "discuss PSA testing with their patients."

            As the data continued to return better results for men who were not screened than those who were, the USPMTF changed from "discuss PSA testing" to "not recommended."

            Ultimately, the outcomes continued to be worse for men who were screened than for those who were not and the USPMTF modified their recommendation to "do not screen."

            This analysis of start and end data without considering the clinical choices made in the middle is what USPMTF does.

            I understand that not using PSA feels like "see no evil" problem solving.

            The pathologists need PSA tests to get better data about the Gleason Scores as predictors of cancer aggressiveness.

            Urologists need PSA tests to offer different treatments -including active surveillance - to discover better outcomes.

            How can we create the new treatment protocols if we stop checking PSAs?

            At this point if we're going to check PSA to discover what management will produce better outcomes, we need to notify patient's that they're participating in an experiment, because we cannot honestly say that doing this test produces better outcomes based on the data collected so far.

            The USPMTF just isn't going to recommend that.

            "Jersey_Boy" was taken.

            by New Jersey Boy on Tue Oct 22, 2013 at 04:59:44 AM PDT

            [ Parent ]

            •  Thanks for your comment. (3+ / 0-)
              Recommended by:
              peregrine kate, lunacat, ZenTrainer

              I understand what you are saying, and I understand the role of the USPSTF.  And from a scientific view, you are certainly correct.  But I don't think it should be classified as an experiment.  It's one indicator that is useful, certainly not a perfect indicator, but certainly useful.

              Your key line, to me:

              "How can we create the new treatment protocols if we stop checking PSAs?"

              Indeed.

              "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

              by outragedinSF on Tue Oct 22, 2013 at 07:43:37 AM PDT

              [ Parent ]

  •  Great Diary! (7+ / 0-)

    I know that my oncologist is against testing just to test.

    He said something like "most men will die with prostrate cancer at very old ages, they won't die because of it. Many getting needless treatment will die from just that - the treatment."

    But he's an out of the box kind of guy. The 3rd oncologist I interviewed before I picked one.

    Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

    by ZenTrainer on Mon Oct 21, 2013 at 07:00:46 PM PDT

    •  Out of the box is good, imho. (7+ / 0-)

      But I want to be clear...I'm totally in FAVOR of widespread screening, but what I am advocating for is that, once tested and diagnosed, that not everyone must submit to radical prosatatectomy.  I have read and agree that it is not unlike what breast cancer was like when the lumpectomy became more widespread.  There was a time when total breast removal was the only way.  That's why I stress the term "radical prostatectomy", for that parallel.

      There should be quality of life considerations and a push for the medical community not to rely on the "easy" answer of total removal and radiation, or "cut and burn."  Yes, some cancers do require agressive treatment, and I totally support those who require those actions to survive, and my heart is with them.  My advocacy here is solely limited to prostate cancer.

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Mon Oct 21, 2013 at 07:14:28 PM PDT

      [ Parent ]

      •  It's hard for some of us still to accept (4+ / 0-)

        that level of responsibility. I know I wanted to have a lot of control over my treatment options--and yet, when it came right down to it, I didn't have to decide whether I would get the radiation treatment I dreaded. In some ways I was let off the hook, ironically enough, by my cancer advancing in such a way as to make radiation moot. I still don't know what I would have chosen if I had to in the end.

        To some degree, I think that the medical profession is slowly moving away from the patronizing attitude that used to be so typical, up to and including cancer treatments. That does place a heavier burden on us, if only to find a doctor/care team that we can collaborate with well. So far, I think I'm doing all right, even if they only communicate through me. But it has not been easy, and in the event of a crisis I don't know what would happen. I hope I don't have to find out!

        Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

        by peregrine kate on Mon Oct 21, 2013 at 07:35:07 PM PDT

        [ Parent ]

        •  It does place a heavier burden on us (5+ / 0-)

          and sometimes, there really isn't a choice.  You are so right.

          I do worry about the "low information" patient, much as I am concerned about "low information" voters.  It's a tough line for the medical community to walk when the response to cancer is so sophisticated, and some patients are, well, not sophisticated.  But I generally believe that when it comes to personal decisions regarding cancer treatment, the individual is better at making that decision, provided they have a sympathetic doctor.  Everyone usually understands the options, if they only have them explained to them properly.  And sometimes, there aren't any options if you want to survive.  But with screening, at least you know.

          "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

          by outragedinSF on Mon Oct 21, 2013 at 07:47:43 PM PDT

          [ Parent ]

          •  And it is so hard to get the information with (5+ / 0-)

            "Cancer, Cancer" screaming in your ear.

            Luckily for me I had decided at an early age that I would never do chemo, radiation or certain drugs. So that part was easier for me.

            Conveying it to doctors was a bit harder. Finally, the three I chose had in common that they also practice in other countries that are a bit more advanced in every kind of medicine than the US. So I didn't have to argue with them as much.

            I remember the anesthesiologist for one of my surgeries was a bit put off when I asked him what kind of anesthesia
            he was going to use. When I told him I didn't want ketamine he asked if I was a drug addict. ?!?!?

            I cited studies on ketamine for him and he stopped me half way when he realized that I knew what I was talking about.

            But gosh, the stress of going through that so many times wore me out.

            Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

            by ZenTrainer on Mon Oct 21, 2013 at 08:26:51 PM PDT

            [ Parent ]

            •  I have a very dear friend (4+ / 0-)

              who was diagnosed with stage IV colon cancer in her early forties.  Her sister also had colon cancer in her thirties, and opted for "traditional" treatment including the full course of radiation and chemo.  Her sister died within two years of diagnosis.

              My dear friend had the cancer removed, but opted out of the recommended course of radiation and chemo.  Completely.  She opted instead to pursue non-traditional paths.  Her diet consists almost completely of raw juices and alternative treatments.  She is now 52 and healthy, with no recurrence.

              I greatly admire you for opting out the recommended course of chemo and radiation.  As you point out, the stresses can be huge.  A big part of this diary is dealing with the "cancer, cancer screaming in your ear."  Different paths are not for everyone, but they should be, and can be, viable alternatives.

              "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

              by outragedinSF on Mon Oct 21, 2013 at 08:57:26 PM PDT

              [ Parent ]

  •  Hey--now the diary is in the Community (5+ / 0-)

    Spotlight! Congratulations on the well-deserved recognition. I hope it draws more attention thereby.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Oct 21, 2013 at 07:39:42 PM PDT

  •  I was diagnosed this year. (11+ / 0-)

    I am now 62 years old. About 3 years ago I had a PSA test of 4.5 and my doctor suggested a biopsy. I hemmed and hawed, and then at the beginning of this year I had a PSA of 10.
    So I had the biopsy and 11 of 12 samples were positive. Does it bother anyone else that bad results are "positive" and good results are "Negative"?
    Anyway, my Gleason score was 7, but it was 3+4 which I was informed was better than 4+3. I had a scan, and they found nothing that had spread that they could see. My bones were clear.
    So we discussed with my doctor. I was in that middle range where below 60 they say treat it, and above 65
    they say not. He advised treatment and discussed, and gave me, the literature. I did extensive research, and eventually decided on Cryoablation. It is less intrusive, and the recovery is much quicker than radical, a couple of weeks with a belly bladder catheter, but otherwise, not much to tell.
    That was in May. In August, my PSA was 0.5. We'll see where it goes from there.
    I can't advise anyone else on what they should do. I just felt that my numbers were high enough and growing fast enough that I had to do something.
    Just make sure you do your research, and do it with an open mind, because whatever position you go in with, you will be able to find someone or something to reinforce it.
    Thanks for the article.

    "A *person* is smart. People are dumb, panicky, dangerous animals and you know it. " Kay (Men In Black)

    by cdndem on Mon Oct 21, 2013 at 08:57:07 PM PDT

    •  Thank you so much for sharing your story, cdndem. (6+ / 0-)

      Cryoablation is something I've read about, but unfortunately for me is not offered by my HMO - I asked.  I'm really glad to hear that you are doing well and that you were able to pursue that course!

      This is where the decision making process runs into the overall medical structure...not everyone has the same options.  I completely agree with you that everyone do their research with an open mind.  Don't assume that you have only certain options.  That is why I researched targeted focal therapy, and am considering it when the time comes.  Many treatments are not viewed by the traditional medical community as "available" treatments.  A lot depends on your access, your ability to educate yourself, and your doctors.

      Again, thank you so much for sharing your story, and all good wishes for continued success.

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Mon Oct 21, 2013 at 09:13:55 PM PDT

      [ Parent ]

      •  Talk about the real death panels - insurance co's. (7+ / 0-)

        Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

        by ZenTrainer on Mon Oct 21, 2013 at 09:29:20 PM PDT

        [ Parent ]

      •  turned out (6+ / 0-)

        that my doctor is one of the leaders in cryoablation. We have some really top-notch doctors in our area.

        I had also asked him about HIFU (High Focused Ultra-Sound) which I had heard there were trials going on for in the US. It is non(or minimally) invasive.
        The way he explained it to me is that when a new treatment is being trialed, it is matched up against one other current therapy. They were doing the HIFU trial against Cryo. When it appeared that they weren't going to "win" they stopped the trial. Supposedly they are going to try again going against radiation.
        My doc had been asked to head up the HIFU trial team, but he chose to head up the Cryo side instead.
        HIFU is available outside of the US.

        BTW, I'm a Canadian ex-pat, so you really don't want to get me going on health care in the us.

        "A *person* is smart. People are dumb, panicky, dangerous animals and you know it. " Kay (Men In Black)

        by cdndem on Mon Oct 21, 2013 at 10:23:12 PM PDT

        [ Parent ]

        •  Great information (4+ / 0-)

          And again, shows that sometimes right place, right time matters.  This is a fast moving field right now, so understandably treatments are in flux all over.  All the more reason to ask, explore and evaluate options.  Thanks again, so much, for your contribution tonight.

          "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

          by outragedinSF on Mon Oct 21, 2013 at 10:34:25 PM PDT

          [ Parent ]

  •  I can't believe the blindered approach . . . (1+ / 0-)
    Recommended by:
    Carol in San Antonio

    displayed here tonight. Haven't any of you sought insight outside of the American medical establishment's limited viewpoint?  Hasn't anyone considered the MANY treatment options available through alternative medicine?

    •  For example, this guy's ideas . . . (1+ / 0-)
      Recommended by:
      Carol in San Antonio

      are hard for even me to accept (I'm skeptical of advice/ recommendations given by any traditional doctor), but these ideas are worth throwing into the mix IMHO: http://www.naturalnews.com/...

    •  This may be your first visit to the Monday Night (7+ / 0-)

      Cancer Club?

      We have a message above which is in every one of our diaries:

      Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.

      Bolds are mine. I was in no doubt at all that the US's standard of care for cancer was lower than so many other countries. That's why I made sure to get doctors who had practiced in other countries.

      What I learned from going to cancer support groups was that everyone and their cancer are individual. Their choice is none of my business. Whatever gets them through the day.

      Some people blindly did whatever their doctor said and didn't worry a bit.

      Some had prophylactic mastectomies which is not something I would do but it kept them from stressing every day.

      I have met people who did only alternative and lived till 90. I've met some who did the same and were dead in 2 months. The same for allopathic treatments.

      It seems to me that cancer is a bit if a crap shoot and you have to deal with it the way YOU feel best, whatever that may be.

      Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

      by ZenTrainer on Mon Oct 21, 2013 at 09:43:33 PM PDT

      [ Parent ]

  •  My father... (7+ / 0-)

    My father passed away in 1987 after being diagnosed with Prostate cancer a few years earlier. He was just 64. They removed his prostate and, as a result, lost his bladder control and became impotent. He wore a bladder bag from that point on. Even traveled like a trouper with my mother, brother, and myself to Europe and Scandinavia in 1985.

    I seem to recall they treated the immediate area with radiation after surgery. I don't recall he was on chemo. The cancer eventually metastasized to his bones, which was the worst part of it.

    His twin brothers, who are about eight years younger than him, both were diagnosed with Prostate cancer at a similar age. (Their older brother died from colon cancer after my father.) So far, my twin uncles are doing well. They were both treated with the implantation of a radiation 'seed.' They have to keep close track of it and take medication, but so far so good.

    I have sometimes wondered what would have happened had they not removed my father's prostate back then. Would he have had a better quality of life, and maybe even lived longer? I sometime wonder if the act of surgery allowed those cells to move from the prostate area only to eventually settle in his bones. What if... what if... what if?

    It seems many men have a much better survival rate now than during the time when my father was diagnosed. I am very heartened by that. I have two brothers and I worry about them being faced with the same prognosis down the road.

    I wish you well on your chosen path, Outraged. I'll keep you in my thoughts and prayers.

    •  Thanks for sharing, WobegonGal. (6+ / 0-)

      Brachytherapy, the implantation of radioactive seeds, does allow for a longer and better quality of life than prostatectomy, and for that reason is a great option for some, particularly in your sixties or seventies.  Brachytherapy results in an extended life of the prostate, although, in the end, it does eventually result in prostate dysfunction.  But if timed right, it can be a great choice.  I know of two people who were diagnosed in their sixties who chose this and happily so.

      Regarding cell migration of cancer: From what I've read, although this is a widespread fear, it is basically unfounded.  The belief that random cancer cells are cut loose and invade surrounding areas has largely been discredited, but I totally understand why people would fear this.

      Again, thanks for sharing your father's and uncles' stories.  Very much appreciated, and thank you for your kind thoughts.

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Mon Oct 21, 2013 at 09:45:13 PM PDT

      [ Parent ]

  •  The reason that screening "doesn't make a (5+ / 0-)

    difference" is a statistical one.  It doesn't make a statistically "significant" difference.  Therein lies the rub.  If you're one for whom screening would have saved your life, statistical significance is meaningless to you.

    The reason it doesn't make a statistical difference is that MOST prostate cancers are so slow growing that most men with prostate cancer will die of something else.  Again, "most."

    So, you should consider your age as well as your overall health, as well as your doctor's advice of course, in deciding what to do.  If you are near the end of your life expectancy and have a heart like Dick Cheney's, for example, you might consider doing nothing at all, because it is unlikely you will die of prostate cancer.

    In my case I was at an iffy age at 66, with no serious health conditions other than my prostate cancer.  My Gleason score at biopsy was six (most scores are six).  

    This number is made up of 2 numbers, the first indicating the aggressiveness of the majority of cancer cells, and the second indicating the aggressiveness of a minority of cells with a different number, if any.  The higher the number, the more aggressive the cancer.  

    A Gleason score of six is usually 3+3, but with a Gleason score of 7, the component numbers are almost always going to be either 3+4 or 4+3, the latter being more serious because the majority of cancer cells are of a more aggressive nature.  

    My urologist was supportive of any approach I chose, including active surveillance, given the 6(3+3) Gleason score and other factors.  My wife is a RN, so she was a big help in weighing the options.  We decided on robotic radical prostatectomy.

    It was good that we did, because the post-surgical pathology Gleason score was 7 (3+4).  The majority of cancer cells were only moderately aggressive, but there was a minority of more aggressive cells that had not been detected in the dozen or so cores taken at biopsy.  Of course with active surveillance there is the possibility they would have been discovered with subsequent biopsies.

    My first post-surgery PSA test at 3 months indicated an undetectable PSA level (<.01).  I go in for the second next week.  But as with any cancer there are no guarantees that it will not recur.  You just have to put it into perspective and take the attitude that whatever happens, you will do what you have to do at the time and go on with your life.

    I can assure you without any hesitation, that I am a proponent of early and frequent PSA testing.

    Blue, blue, my world is blue... http://www.youtube.com/watch?v=h6cPXvTqasg

    by ZedMont on Mon Oct 21, 2013 at 09:45:44 PM PDT

  •  I forgot to say that I am a big believer in second (4+ / 0-)

    opinions also. I got 3 on my tumour, 2 on the biopsy before surgery and 2 after each surgery.

    Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

    by ZenTrainer on Mon Oct 21, 2013 at 09:56:39 PM PDT

  •  Thank you to ALL for a good discussion tonight (4+ / 0-)

    I especially thank peregrine kate for her patience and support in leading this diary to life.  It's bednight for bonzo now, and I'll check back in in the morning for any more comments or questions.  All good thoughts go out to the MNCC community and your kin.  Be well.

    "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

    by outragedinSF on Mon Oct 21, 2013 at 11:52:28 PM PDT

  •  As someone who was diagnosed in 1999 ... (4+ / 0-)

    by flat-out lucky timing of a routine PSA, I believe it would be a big mistake eliminating regular PSA screening in men over such and such an age (we can discuss which age). Rather, efforts and thought and research should go into what we do with the results once we have them. It would be very beneficial if we could avoid the needless biopsies, etc (not to mention they are one of the most uncomfortable procedures I've ever undergone!) and if we could have a broader array of treatment options. However, I agree that men should know, one way or the other, and be able to make choices.

    In my case, I elected surgery, which was done within the month. I live with certain side effects, but my Gleason score in the surgical biopsies was 9, fortunately contained within the prostate margins or I wouldn't be around now. BTW, I was 50 at the time.

    I really must find a good sig line!

    by Rileycat on Tue Oct 22, 2013 at 06:39:20 AM PDT

    •  I agree with you (4+ / 0-)

      What to do with the results and how to proceed is definitely the key.  I do want to stress the biopsy results in my case, and understand that while some cancers are "right" for active surveillance, that is not the case for many.   If I was in your position, I would do the same as you did.

      Thanks for sharing your experience, and so glad your surgery was successful.

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Tue Oct 22, 2013 at 07:56:42 AM PDT

      [ Parent ]

  •  Bachytherapy (8+ / 0-)

    Here's my cancer story.  I am an American but I live in Paris and am in the French Health Care System.  For some time, the PSA test has been part of my annual exam.  Last October, at age 68, my PSA was elevated and my primary care doctor recommended a scan which showed an "anomaly" in my prostate, but they could not tell what it was from the scan.  Hence a biopsy was in order.  The urologist did the biopsy using some kind of scan to direct where he took the samples.  

    I learned the following:  I had a small malignant tumor, it had not spread outside the membrane that holds the prostate and my Gleason score was 6 or 7...I forget which.  

    I asked the Urologist what he would recommend.  He said that if I asked him as a surgeon, he would recommend a radical prostectomy, because he makes his living doing surgery. He said if I asked him as my father, he would recommend Brachytherapy. ( I believe they no longer do external radiation for PC in France anymore, because it can cause too much collateral damage.)

    The Brachytherapy involves the implantation of low dose radioactive "seeds" directly into the tumor and the prostate.  The objective to so create a radioactive cloud that extends a tiny bit beyond the prostate itself and eventually kills the tumor with a low risk of other damage.  He said properly done, it has as good an outcome as successful surgery, but with less risk.

    I asked about "watchful waiting."  He said that eventually all cancers will spread --that is the nature of cancer--and he added that he thinks some doctors are cynical and recommend waiting until the cancer spreads beyond the parameters that permit Brachytherapy to be done so that surgery becomes the only option.  I was shocked by his description of this cynicism.

    I asked about the common thought that PC is slow growing and that you will die with it but not because of it.  He said that depends on the general state of your health....do you have heart disease, diabetes, etc.  I am in excellent health.

    Because the cancer was small, diagnosed early, contained within the prostate, and because my Gleason Scores and PSA readings were within a certain range (I forget what the range was), I was an excellent candidate for Brachytherapy and a "cure" was the most probable outcome.  If I waited (watchfully or otherwise) and any of the protocol parameters were exceeded, Brachytherapy would be out of the question and surgery would be my only option.  

    I went ahead with the Brachytherapy which was performed by a team of 4 doctors (Radiation-oncologist, anesthesiologist, urologist and physicist--to monitor the radiation levels) The doctor implanting the seeds was guided by a realtime 3-D image of my prostate and the tumor so he could place the seeds with precision.

    In France, they have you come in the night before the operation and you stay one more night after the procedure  while they monitor your urine flow to insure that there is no blockage.  (I'm told that in the US Brachytherapy is done on an out-patient basis.)

    I felt no pain before the diagnosis nor after the procedure except for some burning after the catheter was removed.  The discomfort lasted about 2 days and then it went away.

    I  experienced some irregularities in urinating so I take an "alpha blocker" which has pretty much keep all of that under control.  I may or may not be able to stop taking the medicine.  

    My follow up visits at 3, 6 months show that everything seems to be going as it should, principally that my PSA is dropping which it is supposed to do over the next 2 years.  I'm told that one year after the procedure, the PSA might go up, but that is a temporary bounce and after that it should continue to descend to near 0 which is considered a cure.  I am optimistic.

    One final thought.  In France all life threatening diseases are fully covered by the national health plan.  In my case it included a stay in the best oncology hospital in Paris in a private room.  Had I need it, it would also have included taxi fare home.  When I hear politicians say "we wouldn't want our healthcare system to be like France's" I think, "If you only knew."

  •  PSA, Cancer and Diet (4+ / 0-)

    I was diagnosed with PCa in February of 2008.  My urologist took me through the regular steps:  a PSA of 19.7 on a test in December was followed by a round of antibiotics to make sure that it was not an infection causing the high result followed by a biopsy when my PSA remained.  I had always run high PSAs because I have a prostate about 3.5 times the usual size, but 19.7 was the highest I had ever had (my first result, 12 years previously, was 8.80).  The biopsy showed PCa in one of 24 or so cores, with a 1% involvement and a Gleason of 6 (3-3).  My urologist recommended surgery in the immediate near future.  I was at the time 69 years old.  I began looking around the Web for more information.  I found out, of course, that the professionals were beginning to have some questions about the use of surgery in every case.  There was a growing belief that PCa was overdiagnosed and overtreated.  But it's hard to keep men from doing something, anything when the word "cancer" is mentioned and most urologists recommend surgery or radiation because that's what everybody does and you don't want to be the doctor who guesses wrong about the course of the disease.  Nobody can criticize a doctor who is committed to the well-being of his patients and wants them to go on living as long as possible.

     But I discovered a lot of anecdotal information on the Web posted by survivors, and I decided, for the moment, that I would not have surgery.  Instead I changed my diet, cut out red meat, milk products, high fat foods, sugar, which meant no ice cream, no desserts, and so on.  I stepped up my exercise program and lost about 35 pounds.  I read everything I could find about PCa.  

    A year later I had a repeat biopsy, this time with something over 30 cores.  My urologist, who did the best he could to replicate the previous results, came up with no cancer in the cores he tested.  He told me that he had never had a patient show up negative on a re-test.  My PSA by then had gone down to 7.7.  I'm perfectly aware that a negative biopsy does not mean that no cancer is present.  But it convinced me that I was not yet ready for a surgery that would probably mean a catheter for some months and possible other problems after the removal of the catheter.  My PS remains about 10, but that number will always be high given the size of my prostate.  

    In the course of my reading, I found one documented case of a man with a PSA almost as high as mine, 19.3 in his case, who submitted to an experimental treatment using Genistein, a soy complex, for six weeks.  At the end of that period, he underwent a prostatectomy, and when his prostate was sent to the lab for analysis, no cancer was found.  

    Another story, which began in the Seventies, was about a young man who had advanced PCa and was advised to have his prostate removed immediately.  He was then in his late 20s and not inclined to panic, and having too much fun in life to want to give up his prostate, with all the attendant difficulties.  Instead, he went to a completely macrobiotic diet, lost a good deal of weight,  the cancer disappeared, and he's still alive and happy over 40 years later.

    Another study I read about, from Johns Hopkins, apparently found that the younger men in the study who had the rapid growth form of PCa were almost entirely, if not entirely, cigarette smokers.

    Meanwhile, a lot of research is going on and there are some promising avenues opening up.  The difficulty with any cancer is precise targeting.  If doctors can ever work out that problem, there will probably be a lot less radical surgery in the future, and we'll all be glad about that.

    •  This is a superb post, Pelican Flyer (4+ / 0-)
      Recommended by:
      peregrine kate, lunacat, ZenTrainer, jes2

      What an amazing turnaround!  Your statement about it being hard for men to NOT do something when the word "cancer" is mentioned particularly resonated with me.  I've spoken with several men who were in their forties when diagnosed who opted for immediate surgery when the Gleason score did not necessarily point to aggressive cancer, and in every case, they simply could not live with knowing that they had anything called cancer in their bodies.  I admit, that is a tough concept for some.  If I hadn't known first hand a number of men who have been living with prostate cancer for many years, I probably would never have considered surveillance.

      Thanks for sharing this.  Much appreciated.

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Tue Oct 22, 2013 at 11:06:25 AM PDT

      [ Parent ]

  •  A friend of mine was diagnosed with prostate (3+ / 0-)

    cancer in his mid 50's and he went ahead and had the surgery and all that goes with it even though it was mid level on the Gleason.  He died 5 years later from an undetected melanoma.  That prostate cancer would probably have never mattered in his life.

    If faced with a similar prostate cancer diagnosis I would certainly go with the active surveillance approach.

  •  I'm getting to this late... PSA test saved my life (5+ / 0-)

    I had the robotic surgery in May, from Kaiser, and I thought they did a great job.  I had a Gleason 4+3.  In my research I found that there is a world of difference between the 4 and the 3.  One paper stated simply that men don't die from 3.  Mine was rapidly advancing and not treating it was not an option.  The PSA doubled in about a year.  I got a biopsy at 8.  I regulated my diet, drank lots of Kava, and my last test was down from a high of 11 to about 9.  

    Some generalities: all treatments (as far as I know) make you dry.  That's a bummer that we all have to accept, but dry orgasms are still great.  Radiation debilitates you over time, surgery debilitates you immediately, but things get better.

    There is a lot of misinformation out there.  After talking to a few doctors, I realized that for-profit medicine sucks.  The straightest advice I got was from my Kaiser (non-profit) doctor.  The tumors tend to grow near the organ wall and eventually invade the nerves.  Ablation techniques have a good chance of damaging the nerves or else not getting all of the tumor.  Radiation techniques also tend to damage everything in the vicinity.  I think overall effects depend on the person.

    It was a tough decision for me, as it is for everyone.  At this point I'm glad I went for surgery.

      •  Thanks, jb (2+ / 0-)
        Recommended by:
        peregrine kate, ZenTrainer

        You are the only one who has touched on one of the sexual aspects of treatment.  You are also one of the few whom I've ever heard describe post treatment options as "great", so that is tremendous!

        I am part of a discussion group online called Prostate Cancer and Intimacy, which is explicitly devoted to (and quite explicit, I might add) discussing the sexual aspects of having/treating prostate cancer.  I have found the group invaluable, as it is one of the only places you can get a broad range of discussion in an extremely honest fashion about exactly what one might experience after treatment.  It has relieved my biggest frustration, which is the obfuscation many doctors seem to engage in about the true impacts of treatments.

        Thanks for adding to the discussion.  I'm grateful.

        "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

        by outragedinSF on Tue Oct 22, 2013 at 04:56:18 PM PDT

        [ Parent ]

  •  I had the surgery at Age 49 (7+ / 0-)

    I was diagnosed with Prostate Cancer when I was 49.  Needless to say, I was pissed.  An old man's disease?  Not in my case.

    My history:  At age 46 (I'm 62 now), during a routine physical, my doctor ordered a PSA test along with my usual blood work (somewhat unusual, as normally PSA testing doesn't begin until age 50).  At any rate, the PSA was elevated (6.2).  So I had a biopsy.  The biopsy was negative, but the problem is that biopsying for PC is like trying to find a needle in a haystack.

    So I continued to have PSA tests every 6 months, and every time the result was elevated.  And every time the biopsies were negative, until at age 49, they finally hit a tumor.  At this point, my PSA was 27.6.

    My history is unique in that I had testicular cancer when I was 29.  Because I had 6 weeks of radiation therapy, this meant that radiation therapy wasn't an option for PC because I had already reached my threshold of RADs (Radiation Absorbed Dose units).  So I felt that my only option was a prostatectomy.

    The surgery was successful.  Thankfully, there was no involvement of the lymph nodes.  I'm 100% cancer free.

    But that's just the beginning of the story.  Let's discuss side effects.  In my case, I didn't experience incontinence.  But I was impotent.  It was devastating.  A total shock.  I was (and still am) married to a younger woman (11 years my junior), and let's face it, sex is an important component of a relationship.   Even though she had a fantastic attitude ("sex means nothing when you're dead"), I struggled.  Obviously, there are "work-arounds."  We made it work.  But still...

    Flash forward a couple of years later: I did some research and discovered that there are such things as penile implants.  It would have been nice if my urologist had suggested it at the time of my prostate surgery.  I didn't know about it at all.   I confused it with those seedy ads you see in the Sports Section or men's magazines about making your penises bigger.  Not the same thing.

    So I had that surgery a couple of years ago (in my case, fully covered by my insurance) and my only regret is that I hadn't done it sooner.  The side benefit: I can "keep it up" as long as I or she wants.  Pretty nice, huh?  And it looks and feels perfectly normal.

    That is my message.  If impotence is the main fear you have, there are ways to address it.  Don't let that be the deciding factor.

    •  Fantastic, Gilroy! (2+ / 0-)
      Recommended by:
      peregrine kate, ZenTrainer

      See my comment above to jboahu regarding the support group I am in online.  One of the most prevalent topics is how many men have gotten the implant, and how incredibly happy it has made them to regain their sexual abilities.  Your comment is very much in that realm, and I think it's great.  If and when that time comes, I would definitely have an implant done.

      Thanks for opening up with us here...love your honesty.

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Tue Oct 22, 2013 at 05:01:43 PM PDT

      [ Parent ]

      •  Excellent point about Support Groups (2+ / 0-)
        Recommended by:
        peregrine kate, outragedinSF

        I almost forgot that when I was diagnosed, I joined a support group composed of men who were dealing with prostate cancer at varying stages.  We met weekly.  Very helpful.

        Later, I discovered an online support group devoted exclusively to men who either had an implant or were considering one.  The support and information I received from those men were key factors in my decision to have the implant.

  •  RNA PCR test (4+ / 0-)

    There's a much more specific test which involves looking for a cancer-specific RNA and amplifying it with PCR.

    The big headache with PSA is it's low specificity. Something like 17% - which means if the background rate of disease is 17% then you have a 50-50 chance of having the disease with a high PSA level. For relatively young (mid 50's) the background rate is much lower than 17% (1% or so) which means that the PSA test is rather non-predictive.

    To be really useful the specificity has to be much lower and some of the new tests are in that range.

  •  very informative - thanks to OP and commenters .. (2+ / 0-)
    Recommended by:
    peregrine kate, outragedinSF

    As usual, DKOS is a gold-mine of good info and links to more.

    ..now, where did I leave my torches and villagers?

    by FrankSpoke on Wed Oct 23, 2013 at 02:03:05 AM PDT

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