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Posted 4/24/2008 4:36 PM (GMT 0)
New to forum and appreciate the opportunity. 

Was sent by GP doctor to Urologist who was at one time a surgeon, and has now gone into Brachytheraphy.  My cancer is high intermediate.  Not knowing anything about PC, he at first indicated all that would be needed was seed implants.  The next thing I know I am receiving a 4 month shot of Lupron and he is talking 5 weeks of RT followed by the seed implant.  Doc has extensive record (approximately 1000 implants) and claims a success record of up to 90% at 10 years.  This appears better to me than what I have seen on stats with surgery.  However, I am getting the impression this also includes harmone theraphy -so in that regard the stats may be skewed.

I am scheduled to go to a renowned robotic surgeon next week for consultation.  My question for anyone who can shed light or has already walked this path is the mental wrestling match over direction.  Here is what I see as the plus & minus of weighing surgery against the theraphy described above.

  • First - Doing radiation + seeds + harmones is shooting the tiger all at once and hoping he dies.  It is a shotgun approach since I won't really know if my cancer is out of the capsule or not, and if it will come back.  If it does come back, the basic only option after all this radiation is harmone theraphy (since my insides will be too scarred for further radiation).
  • Second - The theraphy described seems a little gray since the harmones will push low PSA scores, but those can be construed to make one think they are cured when all they are doing is suppressing.
  • Third - is there a sense of some comfort after surgery in seeing the pathology report and knowing something of where you stand - ie: in relation to positive margins, and cancer spread?
  • Fourth - Would it be better to have the surgery to see what the pathology says - that way the possibility of radiation for salvage is still available?
  • Fifth - Is there a little peace of mind knowing you have the screwed up prostate with cancer removed versus still there?
  • Finally - It appears that surgery has far more side effects than radiation (although I have heard some tough stories on radiation also), but is there really that big a difference? 

Thanks for any thoughts on these things - I am really wrestling.  RBinCountry

TIC - Gleason 7 (3+4), PSA - 5.1, Cancer in 8 of 10 - mostly at low percentage grade 6 except for the one needle.  61 years old.  Just diagnosed.

Posted 4/24/2008 5:06 PM (GMT 0)

Hi, welcome the site, lots of great info here. I am somewhat younger than you, 46 @ diagnosis, but I felt getting the prostate out was of primary importance for me. The gland itself can be examined under direct visualization to determine extent of disease, margins, lymph node involvement and so forth. I can always opt for salvage radiation if PSA's start to rise. The side effects are a reality, however, I understand there are side effects with almost all forms of therapy, some are just delayed. In the end, you have to do all the research you can, process the info from data available, and make an intelligent decision on course of treatment. I feel that a second opinion is a must, because whatever choice you make will have an impact of you and your family. Good Luck, we are all here to support each other.

Randy

Posted 4/24/2008 5:19 PM (GMT 0)
 Hi ~ RBinCountry and Loved Ones,   W elcome     to…    ~ HealingWell ~   and   A    “ Special ”    Warm Welcome   to   You !   Knowledge gives us POWER….   POWER takes away the fear.   ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~     Click   on   link   below for important information that will help you ~ help us!!     >>   Welcome New Members ~ to HealingWell   The information (link) listed above is to help you get around the forum!    v        This is a journey best traveled with friends.  Welcome ~ New Friend from all the members here... on HealingWell.com   v       IdahoSurvivor ~   Moderator for Prostate Cancer Forum http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg   v       TC-LasVegas ~   Moderator for Prostate Cancer Forum   v       bluebird ~   Moderator for Prostate Cancer Forum http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg
Posted 4/24/2008 5:21 PM (GMT 0)
Hi RB,
Welcome to the best site on the web for patient to patient interaction. This site was a blessing to me and the many members here. You have asked a lot of good questions. I'll take a crack at the answers. I am not an expert but an experienced patient, so some may agree or disagree.

  • First - Doing radiation + seeds + harmones is shooting the tiger all at once and hoping he dies.  It is a shotgun approach since I won't really know if my cancer is out of the capsule or not, and if it will come back.  If it does come back, the basic only option after all this radiation is harmone theraphy (since my insides will be too scarred for further radiation).

    • Taking a dam the torpedoes approach was my strategy.  In this order: Surgery, Hormone Therapy, Radiation, all as adjuvant therapies and I had completed all steps in 6 months.  (HT continuing).  There is some promising information that this improves long term QOL and survivability.  I am not as certain replacing surgery in these cases with seed implants improves anything.

  • Second - The theraphy described seems a little gray since the harmones will push low PSA scores, but those can be construed to make one think they are cured when all they are doing is suppressing.

    • HT kills prostate cancer cells.  Your case appears like it will benefit from HT, but I would still consider all options before deciding to proceed with HT as a first treatment.  It comes with many side effects.  It will lower PSA by shrinking the tumor size not by suppressing PSA.

  • Third - is there a sense of some comfort after surgery in seeing the pathology report and knowing something of where you stand - ie: in relation to positive margins, and cancer spread?

    • Definately there is satisfaction getting the prostate pathology report.  For my it left no doubt I was on the correct treatment path.  Even though I have advanced disease, my PSA was able to get to an undetectable nadir.  Then I fired the shotgun.  With Radiation, while many say equally effective, it comes with what is called PSA bounce.  This is a rising and falling PSA over time, that leaves you a bit nervous when it rises and relieved when it falls.  A pendulum I chose to avoid.

  • Fourth - Would it be better to have the surgery to see what the pathology says - that way the possibility of radiation for salvage is still available?

    • Yes.  Like the last answer, you will have more choices down the road, and while that does not insure better long term results, it does lend peace on mind. (Tony's Opinion)

  • Fifth - Is there a little peace of mind knowing you have the screwed up prostate with cancer removed versus still there?

    • Answer same as the last two.

  • Finally - It appears that surgery has far more side effects than radiation (although I have heard some tough stories on radiation also), but is there really that big a difference? 

    • There is no doubt that surgery has more front end side effects.  In the long term it evens out.  And some do not tolerate RT well.  Seed implant can lead to blood in urination/orgasm which can have a mental effect.  You have to weigh the evidence and make a decision.  Then don't look back.  I've said it before that this site has the best lemonade makers on the planet.  Given any situation the folks here always try to make the best of things.  And you will too.

    Your doctors claim to succesfully treat 90% of his patients seems a bit exagerated but he may have had that success rate by chance.  The truth is that 85% of prostate cancer patients are cured and 15% are not.  With my numbers, those percentages are likely reversed.  Though I keep Faith, Love and Hope in my treatment arsenal.  I also have a motto: Stay positive.  I send that message to you as well.

    Tony 

    Posted 4/24/2008 5:30 PM (GMT 0)
    Hi RBinCountry,

    My heart goes out to you. I, as well as everyone that is diagnosed with prostate cancer, have wrestled with the very issues that you're concerned about. We are all different and have different concerns and priorities. For me, getting the diseased prostate out of my body and getting a true state of the cancer, was of prime concern. I was lucky thus far and have no regrets making my decision, but we have many friends here on this forum that have made different choices and are just as convinced that their choice was the right one for them. Do as much research as you can and you will, at the end, make the choice that is right for you.

    All the best to you in your future.

    Magaboo

    Posted 4/24/2008 5:36 PM (GMT 0)
    Welcome to the forum!  You have some well-formulated questions about approaches to treatment.  Second and third opinions can be helpful. 

    All three of the well-established treatments--radioactive seed implants, surgery  and external-beam radiation--have excellent cure rates and long-term survival.  The newer treatments look very promising but don't yet have an established track record.  It's your choice, so do the research (this web site is an excellent place for information and support) and make your decision.

    After extensive research, my wife and I decided on surgery for reasons that were important to us:  (1) pathological staging where the extent of the tumor and margins can be accurately determined  (2) The PSA goes immediately to zero  (3) The availability of options like salvage radiation if the cancer recurs  (4) Incontinence and impotence tend to get better with time  (5) Less likely to get diarrhea and painful urination.

     

    Posted 4/24/2008 5:48 PM (GMT 0)
    Welcome to this very informative forum.  The one thing I cannot stress enough is that you must do what is right for YOU - will the decision be easy - probably not but you must be comfortable with your decision and move FORWARD not backward.

    My husband chose Brachytherapy and he's never looked back.  His reasons were specfic to him - the turmour was very close to other organs and if they were "nicked" there was a good chance of incontinence - not what he wanted at the age of 44.

    We called, read, searched and interviewed all the options until he was comfortable with what was right for him - my role was to help him find the information and then support HIS decision.  Good luck to you on your journey - if you have any questions with respect to Brachytherapy - post them and I'll do my best to give you the most honest answers I can - it is what it is and the truth is always the best way to go.

    Regards,

    JustJulie

    Posted 4/24/2008 6:03 PM (GMT 0)
    I am so very grateful for all the replies and the good common sense. One thing I have seen with the medical information - there is a difference between the way the facts are approached medically, and the people side of decisions and especially when those decisions are so impacting. My heart also goes out to each of you, as I know your anxiousness and sensitivity to the problem.

    I know a number of people, including some within my family, who have been prostate cancer free for more than 15 yrs. They actually don't think about it anymore. Wouldn't that be nice! God bless you on your walk thru this!

    RBinCountry
    Posted 4/25/2008 1:40 AM (GMT 0)

    Hi Rbincountry,

    In reading your post I think you have presented your information in a way that answers your own questions in a way.

    I am a little younger than you (54) but choose surgery so I have more options if needed, cut the head off the snake, and have the piece of mind that we know what we are dealing with and it is out of my body. After my surgery my cancer was a little more than we thought, a little more aggresive and I have one bad margin.  I can and may radiate depending on PSA.

    To further confuse the matter,  I joined a site called Uroalerts.  They give daily updates on PCa.  A lot is over my head but other is good stuff to ponder.  Mayo had a recent report about salvage prostectomy that was favorable in early disease. It basically gave some data on the removals after radiation.

    You need to be very comfortable with your treatment choice, medical team and accepting of the possable side effects.

    We all will be here for you whatever you choose and thats one thing for sure you dont have to worry about.

    God Bless

    Frank

    Posted 4/25/2008 2:16 PM (GMT 0)
    I suggest that guys newly diagnosed with PC might like to check the likelyhood of cancer spreading outside the prostate or to the lymph nodes at . . .

     

    http://www.prostatecalculator.org/

     

    In my case, there's more than a 50% chance of the cancer spreading outside the prostate.

    In addition, I was not convinced of the survival benefits of RP, RT, or Brachytherapy, so decided to go for Intermittent Triple Androgen Blockade Therapy.

    I'm alarmed that none of the docs I've seen prior to my decision to go for TAB has explained all the available treatment options for PC -- I had to find out by educating myself !! When I pointed this out to one radiation oncologist, he admitted that he doesn't have time to discuss everything with his patients and he didn't mention hormone therapy because (quote) "Most men prefer to keep their libido." I refrained from telling him that I think that's up to me to decide. Actually, I'm more interested in staying alive than retaining my libido, but I should return to normal after 1-year when I stop taking most of the medications.

     

    I'm hoping I can put off more radical treatments until something better comes along.

    Only time will tell if I've made the right decision.

     

    All the best,

     

    Steve

    --------------

    Diagnosed: June 2007. Age 61.

    PSA: 19.2, DRE negative, Gleason 3+3 = 6. No symptoms.

    Intermittent Triple Androgen Blockade Therapy started July 2007 with Zoladex, Casodex 150 mg/day, and Avodart 0.5 mg/day.

    Current PSA 0.057.

    Will probably stop medication in July 2008 except continue with Avodart.

    --------------

     

     

     

    Posted 4/25/2008 3:20 PM (GMT 0)

    Greetings, RBinCountry.  I would echo what several others have said earlier - you must work with your doctors and choose the treatment that you have confidence in and what works for you.  I'll give you my input and you can take it for what it is worth. 

    I had my annual physical in Dec 2007 and my primary care doc suggested I see a urologist.  I saw the same urologist who had treated me for a kidney stone about a year ago.  My PSA had doubled in a year (only from 1.5 to 3.2 but.....).  He asked about my family history and my father, his twin brother and their older brother all had prostate cancer.  All of the previous generation had been diagnosed at about age 70 to 75.  My father had radiation and is doing well at 80.  His twin had surgery and his prostate cancer has returned at 80 in the form of spread to the bones.  Their older brother had seed implants and died at 83 of lung cancer. 

    Based on family history we decided to do biopsies and he took 12 samples of which 2 came back with cancer.  My urologist who specializes in ED and does not play an active role in prostate cancer treatments, sat my wife and I down when he gave us the news and basically said "If you were 65 or 70 I would talk with you about lots of options.  However, at 55 you only have one option and that is surgery."  I realize that is his opinion but it made sense to me.  He indicated that the 10 year survival rate is about the same for all the treatments.  However, if you get it all with surgery, then your zero's just keep on coming.  If you don't get it all, then you have an opportunity for other treatments.  Whatever option I chose, I would have to go to another doctor because he didn't do radiation, seeds, or surgery. 

    He referred me to a surgeon who spent about an hour with my wife and I and we moved forward with the surgery.  I had the surgery and my path report was good and my first PSA was zero.  So, I am happy with the choice we made.  If my PSA ever does go up I still have salvage radiation or HT possibilities.

    Bottom line, you have to do what is best for you.  You have found a good place to get input and support as you make a good decision that is best for you.  We will be praying for you as you make these important decisions.  David

    Posted 4/25/2008 3:40 PM (GMT 0)
    Thanks Steve -
    You have a different view and path - one that is not taken by many but obviously very thoughtfully entered. One of the things my doc did to me (expecting me to go into RT) was give me a 4 month Lupron Depot shot. Although I have not settled yet on what I will do for treatment, this shot has bought me some planing time. Additionally, I am only a little more than two weeks into the shot, but so far the side effects have been manageable.

    By the way, I agree with you completely on the priorities of staying alive if at all possible. I personally would like to watch my 5 grandbabies grow, and if the Lord is willing I would like to do a better job going forward than I have in the past.

    I will check out the web site provided (thank you). God's blessing on you. RBinCountry

    Age 61
    PSA: 5.1
    T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core, 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
    All scans negative
    Lupron administered 4/9/2008
    Posted 4/25/2008 3:51 PM (GMT 0)
    Thanks David,
    Very encouraging note. You obviously had good advice and you have a great family. What more can anyone ask for....and yes this forum is a great source of input and encouragement.
    RBinCountry

    Age 61
    PSA: 5.1
    T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core, 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
    All scans negative
    Lupron administered 4/9/2008
    Posted 4/25/2008 8:41 PM (GMT 0)
    By the way, with my family history of father and 2 of his brothers and now me all having prostate cancer, my surgeon says my son needs to start getting checked at age 35.  He can't afford to wait until 50 like so many recommend.  David

    Posted 4/26/2008 2:20 AM (GMT 0)
    Although I am on Intermittent Triple Androgen Blockade Therapy, I am not recommending this as a treatment option, because a decision on treatment is a personal one and the science is lacking.

    For example, it has been shown for high risk patients that . . .

    SURGERY + HORMONE BLOCKADE is better than SURGERY ALONE.

    It has also been established that . . .

    RADIATION + HORMONE BLOACKADE is better than RADIATION ALONE.

     

    But what about . . .

    HORMONE BLOCKADE + RADIATION versus HORMONE BLOCKADE ALONE ??

     

    As far as I know, this has not yet been established.

    From the above, it is clear that HORMONE BLOCKADE is an important part of the treatment strategy, but there is no proof that adding RADIATION or SURGERY will impriove the outcome.

     

    I realize this is a minority viewpoint and your Urologist or Radiation Oncologist is unlikely to agree with it.

     

    For an alternative view about treating PC I recommend the book "Surviving Prostate Cancer Without Surgery" by Bardley Hennemnfent, MD.

     

    This is a difficult journey, but all the best whatever you decide to do.

     

    Steve

    -----------

     

     

     

    Posted 4/26/2008 2:35 AM (GMT 0)

    Correction -- The book is by BRADLEY Hennenfent.

    http://www.amazon.com/Surviving-Prostate-Cancer-Without-Surgery/dp/0971745412/ref=pd_bbs_sr_7?ie=UTF8&s=books&qid=1209177227&sr=8-7

    Looks like my brain cells are getting scrambled as well.

    Steve

    ----------------

    Posted 5/28/2008 2:52 PM (GMT 0)
    Thinking it might be beneficial to another anxious wayfaring soul who is wrestling with PC - allow me to give an update.  I previously wrote about wrestling between brachytheraphy and surgery (April 26th).  The bottom line I went with Dr. Fagin in Austin and had surgery on May 19th.  Yesterday (May 27th) I had the cathedar removed and received the pathology report.  To my joy (and like Salty from EP who went before me) it was a clean report card.  Now I have to focus on clearing up the dribble, and ED - but praise God the cancer is out of the old body.

    Reflecting back - with radiation I would have gone through IMRT and seeds, with harmones and still always wondered whether the cancer in my prostate had spread or not beyond the prostate boundaries.  Regardless, I would probably have been cured, but I believe the mental part of it would have caused me a rough journey.  Had my biopsy numbers been better maybe not so.  It again is an individual issue that no one can answer for the person wrestling - an individual decision weighing all the facts.

    However, continuing to look back on my very recent events I do want to let anyone interested know what a fine job Dr. Fagin in Austin does, and the whole process and team he has at Westlake Hospitial.  The professionalism, and precise actions are exactly what is needed.  I do believe for anyone wanting to follow a robotic surgery path there could not be a finer place to invest your confidence.  My experience was almost pain free, and although there are annoyances with cathedars etc. in many ways the whole thing was more like an event than a surgery.  Most importantly, I got rid of that troublesome cancered prostate, and hopefully by the grace of God I can continue to live a while longer and prove myself worthy of occupying space. 

    I would rather be in the country as that is where I live.  RBinCountry - Jim

    Age 61

    Original data - pre-operation
    PSA: 5.1
    T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
    All scans negative
    Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants). 

    Post operative - pathology

    pT2c NX MX

    Gleason 3+4

    Margins - negative

    Extraprostatic extension - negative

    seminal vesicle invasion - uninvolved

     

    Posted 5/28/2008 3:02 PM (GMT 0)

    All I can add is a warm welcome.

    IMHO PCa is different for each of us.

    You are your own best advocate so do your research and decide what treatment is best for you.

    God Bless and again, Welcome.

    Richard yeah tongue yeah

    Posted 5/28/2008 3:37 PM (GMT 0)
    RBincountry-
    Welcome and wow! You received a lot of excellent advice. My advice would have echoed many of the previous posts. I'm thrilled that you went with the surgery and the outcome was clean margins! May you have a lifetime of undetectable PSA's!! Good luck in your recovery and keep in touch!

    Doting
    Posted 5/28/2008 5:03 PM (GMT 0)
        Might look into Proton I had proton salvage therapy after robotic and met with a lot of gentlemen of your age and a lot older having proton in the morning and golfing in the afternoon. A doctor once suggested lupron to lower the psa as it could be successful for 20 years. best of luck from them who knows!
    Posted 5/28/2008 10:06 PM (GMT 0)
    Congratulations RB...I think you made a wise choice...Good luck in the future.

     

    Salty

    Posted 7/25/2008 7:45 PM (GMT 0)
    I continue to come back here again and again because of the comradship I feel with all who are dealing with PC.  I also feel a little guilty to express anything positive going on because I read of those who are continuing to have extremely difficult times - my heart goes out!

    However, that said I feel something of an obligation to provide a little update to help others along their journey.  I am now almost 10 weeks out.  I had my first revisit with Dr. Fagin in Austin.  My first PSA post operation was a .04.  I thank God.  I will now be on the 6 month PSA testing.

    As far as incontinence I continue to have some intermittent leaking, although it is gradually improving.  I am using one pad during the day (with the exception of weekends working in the yard a lot - standing up and straining causes more leaking), and another pad at night (which is mostly dry).  Interestingly, it seems if I concentrate on it I can keep it dry.  It mostly occurs when I am caught off guard.  I guess I am almost getting use to this being a way of life as it doesn't seem to be a big deal, or maybe I am just so thankful having the PC out of my body.  I have almost stopped doing the kregel exercises (I do a little here and there if I think about it) - it seems to make little difference.  I believe the dribbling is on the road to drying up and I have hope that will occur soon.

    As far as ED, I am dead down south, but that is also a result of still being under the influence of a 4 month Lupron shot which still has some wearing off time - time will tell.  For now I am content.

    Looking back - the robotic surgery has not been a bad experience.  Everyone facing choices must make up their own mind, and I cannot say there are bad choices.  Thankfully, we have many blessings or ways to deal with the horrible effects of cancer.  I told someone I have had bad colds that were more painful and debilitating than this has been so far - I would encourage anyone with this kind of surgery in front of them, and they have a competent surgeon, to be encouraged.  It will pass very quickly, and the road to recovery is not that bad.  I hope anyone reading this will be encouraged if they are looking ahead to surgery.  God speed!  RBinCountry (Jim)

    Age 61

    Original data - pre-operation
    PSA: 5.1
    T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
    All scans negative
    Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind). 

    Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th

    Post operative - pathology

    pT2c NX MX

    Gleason 3+4

    Margins - negative

    Extraprostatic extension - negative

    seminal vesicle invasion - uninvolved

    1st Post PSA .04

    Posted 7/25/2008 9:17 PM (GMT 0)
    Jim, Thanks for checking back with us and giving us an update.  It sounds like you are continuing on the predicted road of recovery.  Love those .04's, don't ya?

    Posted 7/26/2008 6:19 PM (GMT 0)

    RB:  

      If you have already had the lupron shot and decide that surgery is right for you, the pathology report will be skewed.  I went throught the same timeline it sounds like you are looking at, I had a lupron shot because I was set on HDRT and EBRT as a follow up.  I went to one last meeting with a surgeon who convinced me to have DaVinci surgery.  It appears that the surgery went great up to this point, I'm one and 1/2 months post op but the pathology report could not determine my true Gleason score or the true size of the tumor in the prostate becuse the tumor had been shrunk substantially by the medication.  It was a glass half full and a glass half empty report because the medicine had obviously done its job but there are a few lingering doubts with the report.

     I changed my mind because of my age and the fact I had been told that surgery was not a good option, guess who told me that, oh yeah the radiation oncologist.  When i went to the surgeon who ultimately performed the operation, he sat with me and discussed what appeared to be the volume of cancer and the size of the tumor basede on an MRI of the prostate I had before the lupron was adminstered.  He was confident that he could get it all and that is what I was looking to hear, so I went to surgery.

    You might breach these topics wth the surgeon you are meeting with and see what his opinions are.  Whatever you decide, we're there for support and encouragement.  If you need anymore info. feel free to e-mail me.

    David

     

    Posted 7/26/2008 6:22 PM (GMT 0)

    Woops I was a little late with my prior post.

    David

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