Diagnosed and conflicted on treatment options

2

Comments

  • Mike35
    Mike35 Member Posts: 10
    Josephg said:

    Worst Outcomes

    Folks,

    I think that we need to calm down a bit here.  The one thing that we need to try to control at all costs are our emotions.  I know, much easier said than done.  We do ourselves and our new readers a disservice, if we let emotion swell up over logic and objectivity in this forum (and life, in general).

    Regarding worst outcomes from RP, I probably am closer to that end of the spectrum than the other end.  Read my history here.  I had RP performed at a world class institute by a surgeon with over 2200 previously performed RPs.  My RP was performed over 6 years ago, and I've been totally incontinent and ED since then.  However, prior to surgery, my surgeon asked if my priority was to be hopefully rid of the cancer, or to remain continent without ED, and I told him that removing the cancer was my #1 priority.  So, he proceeded accordingly.

    My RP failed, and my subsequent adjunct radiation and hormone therapy failed, as well.  And, I've probably had almost all of the side effects possible, associated with each of these therapies.  HOWEVER, and this is important, I made all of those therapy choices, myself, based upon the best information that I could find, including the very sage advice from members of this forum.  And, I have no regrets.  Why, because I can still lead a fairly normal lifestyle and participate in most of the activites that I enjoyed, prior to my PCa (with the one obvious exception).

    If I had not chosen to aggressively fight this PCa with all of the tools currently available, today, I would most likely be suffering in stage 4 PCA, looking at 1-2 years of remaining life.  Instead, I am living a very good life, with a projected 10-15 (12 median) years of life left before PCa kills me.  And, that does not include any provision for new therapies that will most likely become available over the next 10 years.

    I am quite content at this point in my life, and I live every day and year, as if it is my last, and that is something that I did not do, prior to PCa.  Respectfully submitted for your consideration.

    Thank you for your perspective

    Thank you for your perspective and best wishes for happiness in your journey.

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    One of the biggest myths

    One of the biggest myths about prostate cancer treatment is the pro-surgery talking point that "you can't have surgery if radiation fails".

    Yeah, but so what?

    Cryotherapy, HIFU, FLA, IRE, SBRT, and HDRBT have all been proven effective for salvage treatment if primary radiation fails.  Did your urologist (surgeon) discuss these options with you? I thought not!

    IMHO, you need to ask many more questions before ruling out any treatments.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member

    One of the biggest myths

    One of the biggest myths about prostate cancer treatment is the pro-surgery talking point that "you can't have surgery if radiation fails".

    Yeah, but so what?

    Cryotherapy, HIFU, FLA, IRE, SBRT, and HDRBT have all been proven effective for salvage treatment if primary radiation fails.  Did your urologist (surgeon) discuss these options with you? I thought not!

    IMHO, you need to ask many more questions before ruling out any treatments.

    .

    Additionally the side effects from radiation occur less often and are generally less significant than surgery

  • MK1965
    MK1965 Member Posts: 233 Member

    Perspective

    Mike35,

    If you undergo surgery, what usually happens is short-term incontinence (a few months or so, with some potential for light dribble beyond), and six months or more impotence.  Most men without ED before surgery get throught he ED afterward, within a year or thereabout.

    MK1965s experience regarding potency is the worst I've ever followed here.  He has an important role here as a voice of worst-case potency outcomes for RP.  Yet even he is testing cured of the cancer (based on PSA results), and recently reported urinary continence had retured for him.  

    But it deserves to be said that worst-case also means "not usual case."   For ever critic of RP here among men who have had it, I would say that 90% are pleased.  I've known many men who had RPs, and never heard any one of them complain about anything.

    Take your time and consider all options well before confirming a choice,

    max,

    DaVinci, Jan 2015

     

    4+3

    Max,

    if you reread my first response on this tread 4+3, you will see I did not mention single word about my outcome except saying “everyrhing else is known to this forum”.

    Honestly, I did not see any reason for stoning me and my outcome.

    MK

  • jeneric82
    jeneric82 Member Posts: 18

    .

    Additionally the side effects from radiation occur less often and are generally less significant than surgery

    agree

    This is the same information that I have gotten from both of the radiological oncology consults that I have had so far for my PCa.  One of the deciding factors for me was also that both doctors stated that ED symptoms from radiation are frequently helped by medications (Viagra, etc.) while ED from RP is typically not. As a 51 year old with a happily active sex life, this was an important factor to me.

  • phaedrus840
    phaedrus840 Member Posts: 4
    HIFU

    Mike -

    I seriously considered HIFU, but went with RP, and am glad I did.  I had a known tumor (3+4) in the right lobe of the prostate, but was concerned if I had the HIFU that there might also be some cancer in the left lobe.  I didn't want to go through all this again.  Post surgical examination revealed a second tumor in the left lobe.  Had I not had the RP, that cancer likely would have grown and I'd have to repeat this whole process over again.  HIFU looked like the best solution to me - and was willing to pay the $20K dollars to get it done myself (some insurance will not pay for HIFU), but until the prostate can be accurately visualized for tumors, I'm not sure it is the way to go.

  • Old Salt
    Old Salt Member Posts: 1,505 Member

    HIFU

    Mike -

    I seriously considered HIFU, but went with RP, and am glad I did.  I had a known tumor (3+4) in the right lobe of the prostate, but was concerned if I had the HIFU that there might also be some cancer in the left lobe.  I didn't want to go through all this again.  Post surgical examination revealed a second tumor in the left lobe.  Had I not had the RP, that cancer likely would have grown and I'd have to repeat this whole process over again.  HIFU looked like the best solution to me - and was willing to pay the $20K dollars to get it done myself (some insurance will not pay for HIFU), but until the prostate can be accurately visualized for tumors, I'm not sure it is the way to go.

    There are better options than HIFU

    Just because of the reasons you mentioned, HIFU is considered experimental in the USA and not recommended by the American Urological Association:

     

    HIFU and Focal Therapy

    1. Clinicians should inform those localized prostate cancer patients considering focal therapy or HIFU that these treatment options lack robust evidence of efficacy. (Expert Opinion)
    2. Clinicians should inform localized prostate cancer patients who are considering HIFU that even though HIFU is approved by the FDA for the destruction of prostate tissue, it is not approved explicitly for the treatment of prostate cancer (Expert Opinion).
    3. Clinicians should advise localized prostate cancer patients considering HIFU that tumor location may influence oncologic outcome. Limiting apical treatment to minimize morbidity increases the risk of cancer persistence. (Moderate Recommendation; Evidence Level: Grade C)
    4. As prostate cancer is often multifocal, clinicians should inform localized prostate cancer patients considering focal therapy that focal therapy may not be curative and that further treatment for prostate cancer may be necessary. (Expert Opinion)

     

  • lighterwood67
    lighterwood67 Member Posts: 393 Member
    Josephg said:

    Worst Outcomes

    Folks,

    I think that we need to calm down a bit here.  The one thing that we need to try to control at all costs are our emotions.  I know, much easier said than done.  We do ourselves and our new readers a disservice, if we let emotion swell up over logic and objectivity in this forum (and life, in general).

    Regarding worst outcomes from RP, I probably am closer to that end of the spectrum than the other end.  Read my history here.  I had RP performed at a world class institute by a surgeon with over 2200 previously performed RPs.  My RP was performed over 6 years ago, and I've been totally incontinent and ED since then.  However, prior to surgery, my surgeon asked if my priority was to be hopefully rid of the cancer, or to remain continent without ED, and I told him that removing the cancer was my #1 priority.  So, he proceeded accordingly.

    My RP failed, and my subsequent adjunct radiation and hormone therapy failed, as well.  And, I've probably had almost all of the side effects possible, associated with each of these therapies.  HOWEVER, and this is important, I made all of those therapy choices, myself, based upon the best information that I could find, including the very sage advice from members of this forum.  And, I have no regrets.  Why, because I can still lead a fairly normal lifestyle and participate in most of the activites that I enjoyed, prior to my PCa (with the one obvious exception).

    If I had not chosen to aggressively fight this PCa with all of the tools currently available, today, I would most likely be suffering in stage 4 PCA, looking at 1-2 years of remaining life.  Instead, I am living a very good life, with a projected 10-15 (12 median) years of life left before PCa kills me.  And, that does not include any provision for new therapies that will most likely become available over the next 10 years.

    I am quite content at this point in my life, and I live every day and year, as if it is my last, and that is something that I did not do, prior to PCa.  Respectfully submitted for your consideration.

    All about Priorities

    I am going for my RP on 03/20/2018.  I am 67 years old.  Gleason 4+3=7.  To me you cut right to the point.  We can always build a better plane, but sooner or later you are going to have to fly that plane.  It is what it is.  Cancer is the primary target.  Repercussions are secondary.  Best wishes.

  • Mike35
    Mike35 Member Posts: 10

    HIFU

    Mike -

    I seriously considered HIFU, but went with RP, and am glad I did.  I had a known tumor (3+4) in the right lobe of the prostate, but was concerned if I had the HIFU that there might also be some cancer in the left lobe.  I didn't want to go through all this again.  Post surgical examination revealed a second tumor in the left lobe.  Had I not had the RP, that cancer likely would have grown and I'd have to repeat this whole process over again.  HIFU looked like the best solution to me - and was willing to pay the $20K dollars to get it done myself (some insurance will not pay for HIFU), but until the prostate can be accurately visualized for tumors, I'm not sure it is the way to go.

    Thanks for your insight

    Yes, that is my concern as well. HIFU, radiation and all other treatments that keep the prostate in the body seem more risky (to me).  I'm getting another MRI and fusion biopsy this month to make a final decision. 

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    Mike

    Radiation cure rate is comparable to surgery with less side effects.....when we are diagnosed, we simply want to get rid of the cancer, thus many including you, look to surgery.

    Targeted HIFU may not cure since technology in my opinion is not advanced to determine multi-focal cancers, and is less likely to cure.

    Instead of having another MRI and fusion biopsy, why not use the previous MRI and go back to the spot where the 4+3 is located and biopsy the areas surounding the 4+3, as well as other suspicious lessions and random.....the  targeted , three dimensional biopsy that you had , has this capability....and in my laymans opinion will provide a better understanding of what is going on.

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    clevelandguy

    We all know that you think that surgery is better than apple pie.

    Instead of taking comments from this site from other advocates of surgery as you are, and comments out of context from others and also out of context from those who have had sugery, I suggest that you show research based information that will support your claims.

    Addtionally time and time again you are not direct and use generalities that indicates different than what is true, specifically surgery side effects are generally greater and happen more often than other treatments. Above you said, " Surgery and radiation treaments have different side effects" This is true but misleading.

    HAVE A NICE DAY

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    Again more opinions!

    Again Hopeful, your comments are misleading and based on your opinion.  The comments that I posted are from actual users on this forum not something I made up.  People here need to get the straight facts based on the people's experience of this forum, studies, and the actual manufactures of both surgical & radiation equipment, not opinions. People know that both radiation & surgery have similar longevity results, various online doctor studies have proved that, but it's all about the side effects, sometimes long lasting and debilitating.  I don't think surgery is better than apple pie, both surgery & radiation have side effects sometimes serious, but I do like apple pie with a small dab of vanilla ice cream on top.

    Dave 3+4

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    Lets get the facts straight

    Hi All,

    Hopeful wrote "Radiation cure rate is comparable to surgery with less side effects" is not really a completely true statement, let me clarify.  Surgery and radiation treaments have different side effects.  Surgery side effects usually start right after surgery and then get better over time(hopefully) where radiation has less side effects after treament but can develop stronger side effects in the coming months and years.  Here are just a few of the later side effects of the various forms of radiation treaments:

    Buzzworth Nov 2017:  It has been three years since I went through cyberknife for prostate cancer.  All is well and my PSA has dropped to acceptable levels almost immediately after the procedures.  Since then I have always encountered a burning sensation while urinating.

    Rob Lee Jan. 2018: I completed eight weeks of radiation last October and the side effects are just now finally wearing off, specifically the proctitis that happens with some men. Diarrhea started my second week and by the end of Tx I was bleeding rectally. I don't know exactly what you mean by abdominal pain, but for many weeks I would go all day feeling like I had to defecate, and often would several times a day. Often there was a lot of gas too.

    Max Jan. 2018:  I asked him about a friend who had received radiation years ago and later had to periodically have his colon cauterized to stop bleeding.  The surgeon told me that this was extremely common, he had done many such cauterizations on men who had received PCa radiation over the years.  

    Vasco Jan. 2018: Radiation treatments for PCa typically create scar tissue in the urethra and bladder. In most of the cases these areas burst into wounds causing bleeding till it repairs by itself. There is no fixed period on occurrences and many guys experience bleeding many years after treatment. Doctors call it RT late side effects

    Bluepac6 Feb 2018:  The radiation I 2011 had damaged my urethra and bladder beyond repair and my only choices were to wear a catheter bag out my penis the rest of my life or have bad part of urethra removed and my bladder removed.

    Joesephg Feb 2018:  My condition was diagnosed as hematuria, and my Urologist advised that this is not an uncommon occurrence for people who have received radiation therapy near the bladder. 

    Las711 March 2018:  Just had 39 tretments Prostate Radiation 4 months ago.. All went well PSA now at .08.. but I now have Radiation Proctitis.. Lower bowel area.. Dealing with it using Surcaltate enemas.. 

    Surgery has side effects as well, ED & urine leakage, sometimes severe, sometime not.  I am sure that you could find just as many bad turnouts for surgery as I have listed above for radiation.  I guess my point is both surgery & radiation treaments have different side efffects and you need to understand them before you make your choice.  Your side effects also depend on the doctor(s) you choose + the facility, and how much cancer needs to be removed, so choose wisely and take your time.  Whether you choose surgery or radiation be prepared to live with the side effects, sometimes mild, sometimes severe depending on each individual case.  Some people think I am a advocate for surgery and I am not.  I am an advocate for free choice based on the correct facts and not someones idea of how they think it is.  We can each only talk here about what our doctors have told us and our own experiences dealing with these treaments.

    I wish there was a treament that had no side effects and got rid of my cancer, I would have chosen it hands down.

    Dave 3+4

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    .

    Instead of cannibalism this thread, as you and the other surgery advocates have done on others, why not start a new thread devoted to this subject. 

  • JJO
    JJO Member Posts: 22 Member
    edited March 2018 #36
    That would actually be 

    That would actually be  pretty useful thread:  discussion the evidence out there as to which treatments have more or less side effects.  When I was investigating treatment options (I eventually chose active surveillence) I was told by all the doctors that radiation and surgery have the same rates of incontinence and ED.  That, however, doesn't make it true.  

  • lighterwood67
    lighterwood67 Member Posts: 393 Member
    Tough Decision

    It is your body, your mind, your cancer, your choice.  It is your choice, right or wrong.  If you cannot make a decision, that is a decision in itself.  This is a wonderful site with a lot of great information, but the bottom line comes down to me.  What do I want to do?  What are the specialists telling me?  Y'all be thinking about me when I go in on March 20 to try and make sure this 300lb gorilla that is trying to escape my prostate doesn't.  I am an old retired Air Force Chief Master Sergeant.  I have seen many different models of airplanes that have been made better.  But when it is all said and done you are going to have and fly that airplane eventually.  Good luck to you folks and best wishes.

     

     

     

     

  • Grinder
    Grinder Member Posts: 487 Member
    ???

    Pie? I like pie. You better give me some pie if you bring it up again. 

  • Grinder
    Grinder Member Posts: 487 Member
    edited March 2018 #39
    Variables

    Instead of promoting or disparaging one treatment over another, we have to consider the variables that make successful treatments versus perceived unsuccessful ones.

    The fact that there is BOTH says the are variables in play. If CG says his surgery is successful without lasting side effects, but MK is angry that his was unsuccessful and has permanent ED as he claims.. THEN WHAT WAS DIFFERENT? 

    I kept tyring to get MK to pinpoint the variable that made his unsuccessful, but he continued to react emotionally and condemn RP wholesale. This is what is irritating for us because we cannot get to the bottom of his bad results to warn others to avoid THAT PARTICULAR SITUATION rather than just condemn radical prostatectomy.

    But CG and myself did not have severe permanent side effects, so that is self evident PROOF that it is a useful treatment in some cases, but maybe not in others.

    If anyone wants to condemn DaVinci RP, then let them bring the variables to light that will allow a PC patient to look at those variables and decide if they apply to HIS PARTICULAR SITUATION.

    I suspect the most likely variable is Davinci experience of the surgeon. If you read into the archives, for both instances of RP AND Radiation, thete is a CORRELATION between experience of the surgeon/ oncologist and the incidence of side effects.

    Emotion plays no part in science. There is only variables and how they effect outcomes.

  • MK1965
    MK1965 Member Posts: 233 Member
    edited March 2018 #40

    clevelandguy

    We all know that you think that surgery is better than apple pie.

    Instead of taking comments from this site from other advocates of surgery as you are, and comments out of context from others and also out of context from those who have had sugery, I suggest that you show research based information that will support your claims.

    Addtionally time and time again you are not direct and use generalities that indicates different than what is true, specifically surgery side effects are generally greater and happen more often than other treatments. Above you said, " Surgery and radiation treaments have different side effects" This is true but misleading.

    HAVE A NICE DAY

    Great comment

    Bravo for hopeful and optimistic!

    Thank you so much for your bravery for replying to Clevelandguy.

    I could not say it better. He is 125 % pro surgery guy and he is blaming my mental state for my bad surgical outcome.

    He put in order bad radiation SE but couldn’t do it for surgery and still blaming others for calling him out for being pro surgery.

    On whole this forum, I see only 3 guys who are talking good about surgery and chocking my every post that I comment on.

    RP surgery is mistake for many prostate Ca patients.

    MK

  • gjw54
    gjw54 Member Posts: 2
    Interesting discussion.  

    Interesting discussion.  

    Yes, that's what drives a person crazy about this disease: too many choices, starting with one of the most basic of all -- surgery versus radiation versus surveillance.

    Personally, I went the surgery route myself, a couple months ago, and so far so good.  Except of course it hasn't been "far" at all yet.  Long way to go still.

    That said, to this point the side effects with regard to continence have been minimal -- (knock on wood).  ED is a bit of an issue but there've already been signs of life, so to speak, in that department as well. 

    Moreover, pathology showed the cancer was organ-confined, which was a big relief.  The major negative news: the Gleason number was upgraded to high-risk, which I guess increases the chances of biochemical recurrence.  We'll see.

    Going back to the choice of treatment, I definitely wrestled with the decision.  I would have jumped on surveillance had it been remotely an option, but since the biopsy indicated Gleason 4-3, the docs took that off the table.

    Radiation was tempting.  Somehow it seemed less scary and drastic than surgery.  However, because of the Gleason score, the docs wanted me to do six months of HT in addition.  The possible side effects of that, both during treatment and for several months afterward, were a major negative consideration.

    In the end, I went with surgery because I'm lucky enough to live very near a top hospital with an outstanding urology department and some of the best urologic surgeons in the country.  For me, this proved the decisive factor.

    So I think the issue is far from simple.  (Indeed, nothing seems to be simple with prostate cancer.)  Guys should ask themselves (and their doctors) whether there's a good chance the cancer is organ-confined.  If not, surgery may not be the best way to go, as you may well end up needing radiation in the end anyway.

    Also, if radiation is the initial treatment choice, will I need HT to go with it?  If so, then add that in when weighing the package of side effects.

    And critically, do I have access to a very skilled and experienced surgeon, with a demonstrated track record of success in performing this difficult operation?  If not, then you're taking a big chance with surgery.

    Anyway, a lot of you guys know much more about this whole thing than I, but hopefully you won't mind me throwing my two cents in.  I've been pretty lucky so far, and I just hope my luck holds.