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    AS as treatment
    kapm44 posted:
    67 years old, PSA 4, had 2 biopsies, last one with 30 samples came back positive- less than 5%. Don't know if that means 5% of samples or 5% of one core. Found in one lobe only. Like everyone else I'm very confused about treatment. Too much information and it can be interpreted so MANY different ways. Would like to try AS, but not 100% sure. Heard and had both surgery and radiation recommended, but the side effects scare me. Know that treatment today is not the same as 10 or even 5 years ago. Much better over all, but the one thing that everyone agrees with is that THE PERSON doing the treatment is more important than the treatment.
    ( depending on health issues that can dictate the type of treatment you can have )
    In my mind, the discussion that Docs have given AS is not the same
    ( not as complete or as in-depth ) as for surgery or rad.
    Part of this could be due to my own personal bias, Hell part of it IS due to my bias. Trying to overcome this, but it's hard when you're locked up in your head 24/7.
    Anyone else doing AS?
    Back-up plan?
    Support system?
    Have you set "cut-off point"? ( test results that will cause you to change treatment? )
    Was AS suggested because of age and health?
    How has it been living with the cancer?

    BillH99 responded:
    last one with 30 samples came back positive- less than 5%. Don't know if that means 5% of samples or 5% of one core. Found in one lobe only.

    Call your doctors office and have them send you a copy of the pathology report. That should make it clear which it is.

    Also it will have your Gleason score, which is an important part of the puzzle. If he is talking AS it is most likely 3 3 which is low grade. But you need to verify that.

    Part of this could be due to my own personal bias, Hell part of it IS due to my bias.

    I think that is a significant part of every one decision. And I am not sure that you want to or can. Part of the decision is your biases about how much are willing to put up with the different possible side effects.

    My history.

    I was also 67 when mine was found from the pathology report from the "chips" from a TURP. It was less than 10% and a Gleason of 3 3.

    When my doctor called me with the results he mentioned AS as being a possibility. But when I went to see him he only mentioned surgery and radiation.

    But when I put it off, because I wanted to do more research and to schedule it when convenient for me, he started pushing AS.

    MY REASONS for what I did.

    I have had some minor bowl problems and was concerned that radiation would make it worse. And I was more willing to have deal with urinary incontinence than fecal, worst case.

    However, I was willing to consider the seeds, as them seem to have less side effect. But the TURP make that much harder to do.

    I had neighbor that had surgery and do well.

    At my age I was concerned that in maybe 5-10 years it might progress and need treatment and I would not be a candidate for surgery.

    I had CABG the year before because of blockage, but no heart attack. I talked to my cardiologist because they don't recomment surgery if you have other conditions that might limit life span to less than 15 years. He said that was no problem in my case.

    Surgery if the only way of finding exactly what you have.

    The final pathology report showed that the Gleason was upgraded to a 3 4 which put in the moderate risk area. Also it was in both lobs running the full lenght and into the capsule, but not through the capsule. So waiting might have allowed it to spread.

    So I feel more relaxed knowing that it is gone.

    At the time I found some good information on AS, but I am not sure where.

    Sloan Ketterning and John Hopkins both have lots of info. But I think the best was from a different source. Maybe Columbia or Boston.
    BillH99 responded:

    With surgery the side effects can improve for up to 2 years, althought most improvement is in the first year.

    With radiation side effects can increase for up to 2 years.

    A study last year did a survey of patients, 2 years after treatment, indicated that people with radiation treatment reported the same quality of life as those that had surgery.

    But remember each person pick there own treatment and part of that decision was based, at least in part, on what they where worried about with side effects.
    kapm44 replied to BillH99's response:
    thanks. Forgot to add that I have 2 path reports- one local, the other from Johns Hopkins. Both are the same ( just about word for word- is this common? ) Gleason is 3 3, no 5's. Both have that " less than 5% " phrase. Think a call is in order to see if they will give/send me more information.

    Have looked at the Hopkins web site. Is it me or do they want to charge you for everything? Maybe I haven't searched the right area of the site. Will put the Kettering site on the to do list.

    Know that having all the tissue is benefit of surgery. Can have a complete look at it. Having said that I am always left wondering where the cancer comes from, if it comes back? Seems like they missed some tissue and it grew back. I know that cells can "float" around our bodies and resettle. But it nags me that no matter how much is removed, something is left to cause recurrence. This is just my gut talking. I've studied enough to kinda know how the cancer comes back.

    Just like "1984" and its NEWSTALK, have started to notice examples of MED TALK. For example some studies say your "cured" if you go 5 or more years without a relapse. Funny but I thought cured was cured. Your over it, done. No more sickness. Also very confused by the multitude of different interpretations from the same study.

    Finding out this is common territory for people having to make a treatment decision. It's a strange land we find ourselves in.

    Thanks for reply
    bogie11 replied to kapm44's response:
    I chose proton therapy 3 years ago because the side effects were minimal to zero, compared to the problems with surgery, IMRT, and seeds ( possible migration). I have had no side effects, and the treatments were like a vacation to me and my wife. I highly recommend that you investigate it before committing to anything.
    BillH99 replied to kapm44's response:
    For cancers the word "cured" has always been a long period of time (5-7 years) without re-occurrence.

    Unlike other cancers the prostate is more self-contained and if he has not already "escaped" there is low likely hood that it will re-occur.

    Sloan Kettering has a number of different prediction models. For both pre and post treatment.

    Mine, post surgery, with a PSA of 5.6 and Gleason upgraded to 3 4 shows a 96% probability of non-reocurrence in the next 10 years and 98% at 5 years.
    kapm44 replied to bogie11's response:
    bogie11, If I go with AS, I plan on using Proton as my plan B. That is, if time and health allow. With my numbers and staging I've been told over and over that I'm a perfect candidate for ANY treatment. Add to that the luxury of having time before I make up my mind. It seems natural to me that my first step is to monitor my disease rather than seek treatment and suffer any fallout that it could bring.

    From my reading - med texts and support group stories - it would seem that having treatment can start its own cascade of events. Some immediate and long lasting, others delayed
    and gradual.

    If this sounds confused, it's because I am sorely confused.
    Thus far I haven't read or heard anything that resonates with what I'm thinking/feeling. ( could this be because I'm still not sure myself ) My "support" group is more like a group of independent voices. Each one clamoring for its own point of view- disregarding mine. Very well could be that my own bias is limiting what I hear.

    Most of the professionals ( read Doctors ) haven't said very much good about Proton. Seems they all think not enough testing/data. Did you find an advocate to help with your choice? When I repeat what I've learned about Proton, more focus less damage. They really down play it, saying rad has improved in all areas. Also traditional treatments have more data and support.

    One area of agreement is that the person doing the treatment is even more important than the treatment itself. Do you agree? How many procedures had your doctor done?

    Happy and safe new year

    RandomPseudoNym replied to kapm44's response:
    There are many options, all bad.

    AS is not really a treatment - it's a non-treatment (or pre-treatment) strategy. It's being a bit oversold at the moment, IMHO - not all PCa is indolent, and biopsies do a very poor job of showing the whole picture of what's going on.

    The facts on proton appear to be that side effects are very similar to EBRT - if bogie11 got lucky, great for him - it doesn't mean you will. The places that have them won't tell you that, but you can find the research if you look. See if your local library has a database of medical journal articles available to you.

    Radiation machines differ - the better ones (as I understand - due to my age I really didn't look into it closely) actually image the prostate (IGRT) so they hit it, rather than depending on you having a full bladder and using external marks on your skin for alignment or the like. Different places have different types of machines - look around at your options.

    Do you have earlier PSA results? Hans Lilja at Sloan-Kettering did some research on archived blood that relates PSA at various ages to eventual aggressive or indolent cancer. For me, at my age with my numbers, that made a great case for cutting it out. If your PSA at 60 was low, you might really be a good candidate for AS. Use his name and a library journal database to look up the actual research the "news" item is based on for more detail.

    My surgeon had done about 350 prostates - I chose him over a guy further away who had done more, partly becasue further away complicated things more, partly because I felt good about his attitude or personal impression. I did not dislike the further away guy, and felt that the further away hospital was a notch or so above the nearby one, but the whole package leaned me to the local option - and I guess part of that was that the local guy does one surgery per day, while the further away big-city guy, used to do 3, and had cut back to 2 - so how well did the last one that was his third long operation of the day go? And how do the second ones he's doing now do compared to the first? But most of it was the many hours of driving all the pre-op and follow-up visits would have involved. If the local guy had not struck me as good, I would have done it, but he did - and that's pretty much a gut call at some point. As it turns out, he's good where it matters, and his office staff is hopeless - but I can deal with that better than the opposite...
    bogie11 replied to kapm44's response:
    Most doctors don't recommend prostate therapy because they lose the business. Loma Linda has been doing this therapy for 20 years, so there is lots of data. Currently there are 9 active centers, and several more are planned or being built. I had mine done at the Univ. of FL center in Jacksonville. It was first made known to me by a speaker at our prostate support group who had been to Loma Linda. I read the book that he recommended by Bob Marckini titled "You Can Beat Prostate Cancer" which discusses the pros and cons of all of the possibilities. The speaker and the book convinced me that proton was the way to go, and I've never been disappointed. I've also talked to dozens of others who have had the same treatment, and they all are glad that they chose proton.
    The doctor does not perform the treatments. It is done by technicians. The doctor does the initial diagnosis to decide whether you are a candidate, and he monitors your progress.
    Let me know if you would like more info. If you wish we could go to email or even phone. I'm ready to help in any way I can.
    Happy New Year to you.
    Mikestangelo responded:
    What is AS? My doc at Mayo never mentioned it.
    BillH99 replied to Mikestangelo's response:
    AS -Active Surveillance.

    In AS there is no immediate treatment. But rather the PC is monitored by periodic PSA testing an biopsies and if it appears to be increasing them to start treatment.

    It is only offered to those over 60 and at low risk for PC metastasizing.
    kapm44 replied to Mikestangelo's response:
    Some people feel that the testing, PSA, DRE and biopsies are
    a form of "prophylactic" protection. They are NOT a cure, and the cancer will still do what ever it want to do. But the tests should keep you up to date on it's progress/growth. The
    trouble is that this disease doesn't follow any know playbook.
    It can take years to progress or weeks and months. There
    are not any (that I know) reliable accurate test to indicate
    the aggressiveness of the cancer.
    You need to factor in that as you age, your treatment options may change ( diminish .) But there are also new treatments and drugs coming down the pipeline.
    Lacking a support group, a TRUSTED doc and a real
    artist at chosen treatment form, I think a lot of men go
    for treatment ( any treatment ) rather than being confused
    and overwhelmed by the contradictory information about
    the different forms of treatment. The end result is that many
    men may not get the form of treatment that is BEST for them.
    kapm44 replied to bogie11's response:
    Walt, I'm coming from a place with a lot of confusion and doubt about treatment tests and studies. My uneducated way of looking at some of this information is that it is used to be
    both PRO and CON. Have had trouble locating test data
    using Proton. Most studies give the common answer that tests were stopped because the Proton results were so good that the control group (untreated) quit and got treatment.
    I am leery of not hearing about any failures using Proton.
    Surely someones' cancer did not respond. Perhaps this is due to excellent screening. But does this mean only "good"
    cases are taken? The little that I know of Proton is that it
    is run a little like a 12 step meeting, including chips and the
    like. Lots of sharing and patient interaction encouraged.
    Absolutely nothing wrong with that, it just sounds hoke.
    Keep in mind this is coming from a place of doubt and

    What would help me is if you would tell me briefly what you
    went through, and what it was like for you. Also if you would share you staging and other stats.

    Best of New Year
    ( we are expecting record highs here in Nebraska )

    bogie11 replied to kapm44's response:
    I suggest that you call the Unuversity of Florida Proton Therapy Center (see Google for phone no.) and they will send you a packet of info. I did that. Then I scheduled a 3 day visit where they ran several tests, including CT and MRI and placement of 4 gold markers in my prostate for ID during treatment. The scans are used to make a plastic mold of the prostate which is used in the cyclotron to aim the protons at the prostate. Then I was given a date for the start of treatment a few weeks later. I arranged for housing during treatment. The center was very helpful in assisting me to find housing. My treatment consisted of 39 visits to the center 5 days per week, which took about half an hour, and the rest of each day was free to do whatever. The actual radiation takes only about a minute, and there is no pain involved. The center also has group activities planned which you can join or not as you choose. My wife and I chose to attend most all of them. It's a very friendly environment, and we became friendly with several couples while there whom we still keep in contact.
    I hope that this answers your questions. If you have more please let me know, and maybe we can email or phone. I'm in Tennessee, BTW, and I think you said that you were in Nebraska.
    bogie11 replied to bogie11's response:
    BRW, my biopsy consisted of one 3 4 and several 3 3s, and my PSA was about 8.5. After treatment it was 5.8 and it has been dropping steadily ever since. The latest was less than 0.5.

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