Diagnosed and conflicted on treatment options

Mike35
Mike35 Member Posts: 10
edited February 2018 in Prostate Cancer #1

Hi all, I'm new to this forum and hope I can receive feedback from this helpful forum.

I'm 56 and just diagnosed with PC in December 2017 using MRI guided biopsy. In total, 2 cores out of 20 had cancer.  2 lesions were targeted in the biopsy: Lesion #1 (right anterior mid transition zone) had 2 of 5 cores with cancer in 20% of tissue with Gleason 7 (4+3).  Lesion #2 (lateral mid transition zone) had 4 cores with only PIN.  MRI showed NO extracapsular involvement in seminal vesicles, lymph nodes or bladder.  Also, NM bone scan was negative.  Current PSA in January 2018 was 7.4 (down from 8 in November 2017).  

My local Connecticut urologist that conducted the guided MRI biopsy recommended surgery.  I got a second opinion from Memorial Sloan Kettering and inquired about their targeted ablation HIFU trial.  The lead trial doctor said I qualified for the trial.  He is only SLIGHTLY leaning towards recommending surgery over HIFU (his oncology nurse seemed more positive about HIFU).  Also went to Yale doctor for a radiation oncology consult.  I've ruled out radiation options.

I'm STUCK between going with the HIFU treatment that seems to have minimal side effects and quick healing time or RP surgery...to just get it out and done with (hopefully).  I keep going back and forth.  Any insights, experience and suggestions are greatly appreciated!

Thank you and be well.

Mike

«13

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 751 Member
    Which is best?

    Hi,

    Sounds like HIFU is kind a like Proton radiation, it uses a focused beam of energy to kill the cancer.  I guess the question I have if the HIFU was not sucessful, then can other more traditional methods(surgery & radiation) be used at a later date?  I would go with the most experienced hospital & doctors that have done this thousand of times to make sure you get the best team for the HIFU.  A trial group for any kind of treatment kinda raises a flag in my brain.  Is this a proven method at the hospital that you want to go to?  Maybe choose another hospital that they do this as a routine procedure.  Keep doing your homework which will lead you to the best method to deal with your cancer.

    Dave 3+4

  • Mike35
    Mike35 Member Posts: 10

    Which is best?

    Hi,

    Sounds like HIFU is kind a like Proton radiation, it uses a focused beam of energy to kill the cancer.  I guess the question I have if the HIFU was not sucessful, then can other more traditional methods(surgery & radiation) be used at a later date?  I would go with the most experienced hospital & doctors that have done this thousand of times to make sure you get the best team for the HIFU.  A trial group for any kind of treatment kinda raises a flag in my brain.  Is this a proven method at the hospital that you want to go to?  Maybe choose another hospital that they do this as a routine procedure.  Keep doing your homework which will lead you to the best method to deal with your cancer.

    Dave 3+4

    Thank you

    Thanks Dave.  All treatment options remain open with HIFU.  Not a lot of data in the U.S. for HIFU outcomes.  I was hoping some folks that went through the procedure will chime in.  I believe Memorial Sloan Kettering in NY is one of the top hospitals and I would be comfortable with geting RP surgery or HIFU treatment there.  Just can't decide on if I should take the risk and be a HIFU test rabbit.

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    HIFU is not new but there is not much data yet on outcomes

    I cannot opinion on HIFU as this procedure is old but still in its initial steps and not many report on experiences. In any case, in comparison with surgery, this is not as focal as surgery. The whole area will be involved and receive the blow, including the regional nerve system, the rectum, bladder, and seminal vesicles. The good is that one keeps the organs and tissues in place including the gland and what is within it. The kill must be assured so that the high-intensity sound waves need to be projected with due high intensity enough to kill the cells or it will just treat the wound.

    I have no details of MSKCC HIFU trial but I know that in some trials doctors adapt the scope of the trial according to expected results. Guys at MSKCC would not want to have many people with nasty side effects as a conclusion of the trial. In the end, trials are good as they provide the possibility in having novel therapiesfree of charge, assisted by specialists, before, during and after the treatment, and that includes all diagnostics, tests and exams.

    Here are old links regarding HIFU;

    https://csn.cancer.org/node/188555

    https://csn.cancer.org/node/149722

    Surgery, on the other end, should be chosen if one is assured of having a contained case. Your Gleason grade 4 raises the flag on risks for existing extracapsular extensions. In your shoes I would investigate further with a PET scan.

    Best,

    VG

     

  • Old Salt
    Old Salt Member Posts: 899 Member
    What about Active Surveillance?

    Title says it all.

    I believe that MSK has a program for this kind of approach, but I don't know if your status would qualify. Active surveillance could be combined with the 'natural' approach that you seem to favor.

    As Vasco mentioned, HIFU is still experimental in the USA. And yes, you will be a 'test rabbit'.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited February 2018 #6
    Targeted HIFU

    I am sorry for your diagnosis.

    I assume that the MRI that you received used a 3.0 magnet with greater definition; and not the 1.5 magnet for your fusion biopsy.

    Prostate cancer tends to be multi focal, that is , especially with high intermediate 4+3=7. There will probably be areas that are not identified at this time, and will be missed with HIFU.

    As part of a research study I was offered targeted HIFU free of charge that I declined.(3+3=6) since I believe that in theory the procedure is a great one, however technology in my opinion is not advanced for best results. 

    Aside from studying the procedure, I read a very long thread at usToo webside, that you may wish to read.   Various men who posted had this procedure, but their geasons were less aggressive than yours, and less chance of multifocal.

    The side effects from surgery can be greater than any other active treatment.

    There is a relatively new radiation called SBRT that many men on this board have done. This procedure hss limited side effect with comparable cure as surgery. There are various machines that deliver SBRT; cyberknife, varian , etc.

    Here is a nine year study by Dr Katz, who in in NYC, and you can consult. He has has probably done more sbrt's than any other radiogist. His cure rate for intermediate is 89%

    https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

     

  • Mike35
    Mike35 Member Posts: 10

    HIFU is not new but there is not much data yet on outcomes

    I cannot opinion on HIFU as this procedure is old but still in its initial steps and not many report on experiences. In any case, in comparison with surgery, this is not as focal as surgery. The whole area will be involved and receive the blow, including the regional nerve system, the rectum, bladder, and seminal vesicles. The good is that one keeps the organs and tissues in place including the gland and what is within it. The kill must be assured so that the high-intensity sound waves need to be projected with due high intensity enough to kill the cells or it will just treat the wound.

    I have no details of MSKCC HIFU trial but I know that in some trials doctors adapt the scope of the trial according to expected results. Guys at MSKCC would not want to have many people with nasty side effects as a conclusion of the trial. In the end, trials are good as they provide the possibility in having novel therapiesfree of charge, assisted by specialists, before, during and after the treatment, and that includes all diagnostics, tests and exams.

    Here are old links regarding HIFU;

    https://csn.cancer.org/node/188555

    https://csn.cancer.org/node/149722

    Surgery, on the other end, should be chosen if one is assured of having a contained case. Your Gleason grade 4 raises the flag on risks for existing extracapsular extensions. In your shoes I would investigate further with a PET scan.

    Best,

    VG

     

    Thanks for reply

    Thank for reply and the links.  I agree that data is slim and many of the posts here are dated.  I'm thinking that MSK will do additional tests before surgery or HIFU.

    Thank you!

    Mike

     

  • Mike35
    Mike35 Member Posts: 10
    Old Salt said:

    What about Active Surveillance?

    Title says it all.

    I believe that MSK has a program for this kind of approach, but I don't know if your status would qualify. Active surveillance could be combined with the 'natural' approach that you seem to favor.

    As Vasco mentioned, HIFU is still experimental in the USA. And yes, you will be a 'test rabbit'.

    MSK does have a HIFU trial

    Thank you for your reply.  Yes, I went to MSK specifically to see if I would qualify for their HIFU trial.  I did qualify...but am going back and forth between surgery and HIFU.  Tough one.

    I'm uncomfortable with AS because of my 4+3 Gleason. I figure that HIFU is somewhere in between AS and Surgery.

    Below is the link to the MSK focal therapy info and HIFU clinical trial (trial link is under High Intensity Focal Ultrasound section). 

    https://www.mskcc.org/cancer-care/types/prostate/treatment/focal-therapies

     

     

  • Mike35
    Mike35 Member Posts: 10
    edited February 2018 #9

    Targeted HIFU

    I am sorry for your diagnosis.

    I assume that the MRI that you received used a 3.0 magnet with greater definition; and not the 1.5 magnet for your fusion biopsy.

    Prostate cancer tends to be multi focal, that is , especially with high intermediate 4+3=7. There will probably be areas that are not identified at this time, and will be missed with HIFU.

    As part of a research study I was offered targeted HIFU free of charge that I declined.(3+3=6) since I believe that in theory the procedure is a great one, however technology in my opinion is not advanced for best results. 

    Aside from studying the procedure, I read a very long thread at usToo webside, that you may wish to read.   Various men who posted had this procedure, but their geasons were less aggressive than yours, and less chance of multifocal.

    The side effects from surgery can be greater than any other active treatment.

    There is a relatively new radiation called SBRT that many men on this board have done. This procedure hss limited side effect with comparable cure as surgery. There are various machines that deliver SBRT; cyberknife, varian , etc.

    Here is a nine year study by Dr Katz, who in in NYC, and you can consult. He has has probably done more sbrt's than any other radiogist. His cure rate for intermediate is 89%

    https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

     

    Thank you for the info...

    Yes, it was a 3.0 Tesla MRI was used.  The multifocal concern is real and what is keeping me up and leaning me towards surgery.  Then I think if AS is an option isn't HIFU somewhere in between?

    I'm hoping that since I had 10% (2 of 20 cores) with cancer in 20% of the tissue and all other 18 cores were negative.  And that my prior 12 core biopsy was negative 18 months earlier that it is confined to the prostate and target lesion.  Maybe just wishful thinking? 

    Thank you, Mike

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    As a man who has been in an

    As a man who has been in an Active Surveillance protocol since March 09, i closely studied this procedure, and I cannot understand why Active Surveillance would be offered to a 56 yo with a 4+3=7. However if AS is selected as a treatment choice, another biopsy can be  done to determine more information about the extent of the cancer in the prostate; since your fusion biopsy was three dimensional, the doctor has the ability to go back to the exact spot(s) where the 4+3 was located, and biopsy the surrounding tissues of each  ......so if the 4+3 core only consist of what is found, then AS can be a possibliity, however again, with a 4+3 there is a great chance of metasisis in a long term AS program.

    Surgery versus Radiation

    Surgery is a localized treatment.

    With radiation, the perimeter of the treatment can be extended beyond the prostate, so  microscopic cancer that has escaped the prostate and is just beyond the prostate will be treated. The chance of this occurring with a man diagnosed with a 4+3 is high, eventhough the MRI does not indicate this.

    ....................

    You mentioned in one of your posts that you prefer surgery over any radiation.......if I may ask, why is that?

  • paulc59
    paulc59 Member Posts: 10
    Mike35 said:

    Thank you

    Thanks Dave.  All treatment options remain open with HIFU.  Not a lot of data in the U.S. for HIFU outcomes.  I was hoping some folks that went through the procedure will chime in.  I believe Memorial Sloan Kettering in NY is one of the top hospitals and I would be comfortable with geting RP surgery or HIFU treatment there.  Just can't decide on if I should take the risk and be a HIFU test rabbit.

    Mike,like yourself i felt

    Mike,like yourself i felt like i had to make a decesion fairly quick as i was diagnosed with a 4+3 and a radiologists gave me about a 3 month timeline to act,by the way, a radiologist recomended rp surgery along with my urologist which did put the final touches on my decision. Everything has gone as planned. One night in the hospital,7 days at home with cathedar,except for some stomach pain,muscular,i didnt find the cathedar or that first week that big of a deal.Everyday i felt better and all urinary and bowel functions worked fine.There was a little blood for the first couple of days as expected but none since. I have no retrictions 2 months in.I have some minor dribbling usually from bending over or not reaching the bathroom when when blatter full. I wear a thin depends when out and at work,but my plain jockies while at home.Most importantly my first psa reading read 00.0,so hopefully the cancer it is gone. As always i will address the ed issue. I started on doctors recomendation 20mg of sildenafil-it has done nothing  after a month to generate an erection. because we live in a small home with 2 young teenagers sex was hard to come by anyway so as of yet it has not been an issue with the wife.Her 12 hour work shifts dont help the matter either. We were fully aware i might have to wait 6 months-a year ,whatever for erection to occur we are both 60 and usually to tired for sexanyways. I just wanted the cancer out as quick as possible with limited side efefcts and so far i have been pleased with the rp for what it is worth.For some people that are more sexually active than myself i could see where it could be an issue,but im alive,working,enjoying my kids ,and still have a loving supporting wife.

  • MK1965
    MK1965 Member Posts: 230 Member
    edited February 2018 #12
    4+3

    If your second opinion confirmed 4+3; you still have chance to be downgraded after surgery and with that in mind you would regret RP and its terrible SE especially for someone young as you are.

    I was n same boat 4+3 after biopsy and wanted to stay on AS even against medical advice. Neither urologist nor RO recommendation was AS. While being squished between urologist recommendation and my wife pressure, I made mistake and went into surgery Which I heav regretted. Everything else is well known on this forum.

    MK

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    MK1965 said:

    4+3

    If your second opinion confirmed 4+3; you still have chance to be downgraded after surgery and with that in mind you would regret RP and its terrible SE especially for someone young as you are.

    I was n same boat 4+3 after biopsy and wanted to stay on AS even against medical advice. Neither urologist nor RO recommendation was AS. While being squished between urologist recommendation and my wife pressure, I made mistake and went into surgery Which I heav regretted. Everything else is well known on this forum.

    MK

    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

     

  • MK1965
    MK1965 Member Posts: 230 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

     

    Worst case

    Max,

    I am not RPworst case as you said. I am just one of thousands and thousands of patients with bad outcome who continue to suffer loss of quality of life after RP. Erectile function recovery after RP on this forum is heavyly downplayed by some commentators like yourself and your first violins clevelandguy and Grinder. All this forum of good experiences is written by just couple of guys. 

    If that is representation of surgical outcome than let’s be it.

    MK

  • Clevelandguy
    Clevelandguy Member Posts: 751 Member
    edited February 2018 #15
    Hey, Hey Hey, I don't play the violin

    Hi All,

    Diddo on what Max said.  Not all RP turn out bad, some do tho depending on the circumstances.  Not fair for one person to come on and bash good outcomes of RP.  There are more than three people on this form that have had succesful RP's.  If you want I can post some bad outcomes from Radiation treaments, ALL TREAMENT OPTIONS HAVE SIDE EFFECTS MK, some worse than others.

    MK said:" I am just one of thousands and thousands of patients with bad outcome who continue to suffer loss of quality of life after RP".  I don't agree with that statement at all, based more on emotion than fact.  If Mike35 wants to do some form of radiation treament then go for it. There are several good radiation treatments available but they too have side effects.  
    But like most adults you do have to learn to live with your life choices good or bad.  I think MK that when you realize that you are free of cancer and don't have leakage(count your blessings) maybe, just maybe you can move past your unfortunate surgical outcome and embrace life.

    Dave 3+4

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    MK1965 said:

    Worst case

    Max,

    I am not RPworst case as you said. I am just one of thousands and thousands of patients with bad outcome who continue to suffer loss of quality of life after RP. Erectile function recovery after RP on this forum is heavyly downplayed by some commentators like yourself and your first violins clevelandguy and Grinder. All this forum of good experiences is written by just couple of guys. 

    If that is representation of surgical outcome than let’s be it.

    MK

    Ridiculous

    Mike 1965,

    I'm sorry that you chose to respond with absurd, hysterical commentary.

    If "thousands upon thousands" of tragic examples are out there, why is only your voice here characteristic of such a group ?  And why would RP continue to be either the most popular treatment choice today, or tied for most popular ?

    If you are not the current "worst case" example of RP impotence at this Board, then who isName that person and I will read his threads today. 

    I do not know what sources you use (assuming you use any), but I would be interested in the time frames that this hoard of men got their RPs performed.  Apples must be compared only to apples, not with prunes.  RP surgery today is quite unlike RP 40 years ago, exactly as with radiation technology.  And therefore statistical outcome data from decades ago cannot be used regarding modern results.

    This childish back-and-forth is not at all to my taste or personality, but your post was so outrageous that it could not go unchallanged, for the well being of our new readers.

    max

  • Josephg
    Josephg Member Posts: 317 Member
    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.

  • Clevelandguy
    Clevelandguy Member Posts: 751 Member
    edited February 2018 #18
    Very well said

    Hi all,

    Very well said Josephg, seems your RP did not go well but your getting on with life just like we all should. I feel you should always look forward towards the next challenge.

    Dave 3+4

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    .

    Yes Joseph, Not a good idea to go on and on about surgery at this thread,.......discussion about the side effects of surgery versus other treatments can be at a separate thread exculsively devoted to thevtopic.

    All..........have a great weekend...........time for a glass.

  • Mike35
    Mike35 Member Posts: 10
    paulc59 said:

    Mike,like yourself i felt

    Mike,like yourself i felt like i had to make a decesion fairly quick as i was diagnosed with a 4+3 and a radiologists gave me about a 3 month timeline to act,by the way, a radiologist recomended rp surgery along with my urologist which did put the final touches on my decision. Everything has gone as planned. One night in the hospital,7 days at home with cathedar,except for some stomach pain,muscular,i didnt find the cathedar or that first week that big of a deal.Everyday i felt better and all urinary and bowel functions worked fine.There was a little blood for the first couple of days as expected but none since. I have no retrictions 2 months in.I have some minor dribbling usually from bending over or not reaching the bathroom when when blatter full. I wear a thin depends when out and at work,but my plain jockies while at home.Most importantly my first psa reading read 00.0,so hopefully the cancer it is gone. As always i will address the ed issue. I started on doctors recomendation 20mg of sildenafil-it has done nothing  after a month to generate an erection. because we live in a small home with 2 young teenagers sex was hard to come by anyway so as of yet it has not been an issue with the wife.Her 12 hour work shifts dont help the matter either. We were fully aware i might have to wait 6 months-a year ,whatever for erection to occur we are both 60 and usually to tired for sexanyways. I just wanted the cancer out as quick as possible with limited side efefcts and so far i have been pleased with the rp for what it is worth.For some people that are more sexually active than myself i could see where it could be an issue,but im alive,working,enjoying my kids ,and still have a loving supporting wife.

    So glad you're doing well

    So glad you're doing well after rp. It helps a LOT to hear from someone who had the surgery and doing well. Continued success!

  • Mike35
    Mike35 Member Posts: 10

    As a man who has been in an

    As a man who has been in an Active Surveillance protocol since March 09, i closely studied this procedure, and I cannot understand why Active Surveillance would be offered to a 56 yo with a 4+3=7. However if AS is selected as a treatment choice, another biopsy can be  done to determine more information about the extent of the cancer in the prostate; since your fusion biopsy was three dimensional, the doctor has the ability to go back to the exact spot(s) where the 4+3 was located, and biopsy the surrounding tissues of each  ......so if the 4+3 core only consist of what is found, then AS can be a possibliity, however again, with a 4+3 there is a great chance of metasisis in a long term AS program.

    Surgery versus Radiation

    Surgery is a localized treatment.

    With radiation, the perimeter of the treatment can be extended beyond the prostate, so  microscopic cancer that has escaped the prostate and is just beyond the prostate will be treated. The chance of this occurring with a man diagnosed with a 4+3 is high, eventhough the MRI does not indicate this.

    ....................

    You mentioned in one of your posts that you prefer surgery over any radiation.......if I may ask, why is that?

    Leaning away from radiation

    Leaning away from radiation treatment because it limits having surgery if reoccurence.  I realize each situation is different but don't like the idea of potential for delayed side effects and recurrence.