Prostate cancer diagnosis

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  • Grinder
    Grinder Member Posts: 487 Member
    #22
    Clevelandguy said:

    Stats

    Where I used to work our Stats guy said what do you want the numbers to say? Really need a true comparison of open vs robotic and the various radiation methods.  Grinder's has some valid points.

    Dave 3+4

    yes

    yes

  • Grinder
    Grinder Member Posts: 487 Member
    #23
    risk assessment

    This is not about choosing teams and which "side" you are on.

    If MK quotes a study of general radical prostatectomy at only 23% recovery rate, and I quote a study of nerve sparing RP at a 60-80% recovery rate, where is the discrepancy?... By discovering the VARIABLE that made the difference between the two figures, in this case, all types of surgery versus nerve sparing surgery, we have already reduced the risk for cancer patients of the future. 

    If we knew the VARIABLES that made the difference between 2% and 39% incidence of proctitis during radiation, we could reduce the risk for future cancer patients who choose radiation as well.

    So, "winning an argument" about radiation vs prostatectomy is not the issue here, and i apologize if anyone got that mistaken impression from me. The issue here is reducing risk for future cancer victims, and the only way to do that is to investigate the variables that contribute to successful outcomes. 

    Why was Cleveland's surgery successful? Why did some radiation treatments cause severe  proctitis when some did not? If I am a cancer patient newbie, I want to know WHY some were unsuccessful, and avoid that variable and reduce my risk as much as possible. A perfect example  is experience of the surgeon. Data needs to be compiled charting experience of the surgeon (number of RPs performed) vs. side effect incidence. There will most certainly be a correlation.

    If you want to help the new cancer patients, help them reduce their risk.

    Maybe this whole issue should be framed as risk management instead of comparative research.

     This is why i was disappointed when Surgeon's Scorecard quit updating their data. They used to show  the number of surgeries performed by each surgeon in the country, as well as the number of cumulative side effects resulting from that surgeon. That was useful for me at the time, but wont help the new cancer patients if they dont update it with current stats.

  • MK1965
    MK1965 Member Posts: 233 Member
    #24
    SE

    No ones opinion can be heard and accounted in this forum if ti is not about surgery and praises of RP.

    Every treatment has SE but surgical SE are the harshest and the hardest to recover from. It is not only me it is huge number of patients experiencing same problem in EF recovery.

    Even Rob Lee was in doubt about RP when he started tread:”Were Your PCa treatment results what you expected?” 4/24/17 at cancerforumsdotnet.

    Grinder , I recommend you go there and read it to see others recovery of EF after RP Which was very disappointing.

    Please, stop mocking me for my bad outcome and do not mention me in your comparison.

    i appreciate it.

    MK

  • RobLee
    RobLee Member Posts: 269 Member
    #25
    Were Your PCa treatment results what you expected

    MK - Thanks for the reminder.  I do remember starting that thread on CFN but just tried searching for it and the search always came back empty.  If you are able to find it, could you please post a link?  I'd appreciate it. 

    Sort of like a walk down memory lane.  It's always interesting to get a glimpse of what one's own state of mind was during a prior period of time.

  • Clevelandguy
    Clevelandguy Member Posts: 1,208 Member
    #26
    Good thinking

    Hi all,

    Good thinking SantaZia & Grinder, you must study all the variables and weigh them against your specific case. Your cancer locatation in your Prostate, Gleason score, and other factors should all lead you to a specific treament tailored to your case.  Consult with your doctors and pick the best one & the greatest facilities to maximize your chance for success be it radiation or surgery. Don't be afraid to get second or third opinions.  As far as I know nobody walks away from any cancer treatment for Pca without some kind of collateral damage either early or latent.  Some recover very nicely and others have a hard time of it.  There are no guarantees in life so study & choose wisely, the balance of your remaining quaility of life is important.

    Dave 3+4

  • Tech70
    Tech70 Member Posts: 70 Member
    #27
    Steve1961 said:

    Hey

    check out my blog ...almost 5 months on and no decision yet...I have been lucky enough to have met the supposedly the best of the best at Stanford and UCSF number 4 and 8 supposedly in the country ..lcyberknife expert 2 brachytherapy experts and 3 top notch surgeons who r nit pushing fir surgery ...but to tell u the truth I may end up doing surgery and be done with it ...cybrtknife sounds and seems great just not sold on it ..brachytherapy I just can’t see it nit messin* up my poor urinary problems 5 times more ..I mean do I want urgency 4 times a day instead of 2 do I want to get up 5 times a night instead of 2 and sit on the toilet fir 6 minutes each times while pee dribbles out like a bad faucet ....every single night fir the rest of my life going to be a huge tough decision ...This whole drama has been exhausting bone scans  mri sonograms ....but thank GOD so far all is good  but I really just want this over with ........it’s hard to bielieve all this far 3 little tumors the biggest one probably smaller than a pee and it Gould and would eventually kill u...wow cancer sure does suck......I went fir an hour long mri t3 kidney liver and prostrate. All was good ...guess how much 27000 dollar omg anyway my friend get many opinions hopefully u won’t have to hurry like I don’t have to at least that’s what they say April 20i will have narrowed down my choice hopefully it will help u .....old salt hopeful and helpful and a few other have helped me a lot ..listen to their advice like I have 

    Cost!

    I'm shocked at the $27,000 figure for your MRI if I'm reading that correctly.  I went for what was described in the radiologist's report as "Multiparametric multiplanar 3T MRI imaging of the pelvis with and without contrast"  The total amount billed Medicare, including drugs, was app. $5200.

     
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #28
    Clevelandguy said:

    Good thinking

    Hi all,

    Good thinking SantaZia & Grinder, you must study all the variables and weigh them against your specific case. Your cancer locatation in your Prostate, Gleason score, and other factors should all lead you to a specific treament tailored to your case.  Consult with your doctors and pick the best one & the greatest facilities to maximize your chance for success be it radiation or surgery. Don't be afraid to get second or third opinions.  As far as I know nobody walks away from any cancer treatment for Pca without some kind of collateral damage either early or latent.  Some recover very nicely and others have a hard time of it.  There are no guarantees in life so study & choose wisely, the balance of your remaining quaility of life is important.

    Dave 3+4

    If shoe fits....

    I agree with all that Cleveland wrote.

    Surgery is mostly a good choice (among others) for guys who are certain there is NO metastasis, with good heart health, and young enough for major surgery.   It is also best for guys who want immediate confirmation of their cancer status, and who would be uncomfortable with oscillating PSA results trying to establish a nadir level.  This last criteria is an emotional one, unrelated to liklihood of cure.

    Surgery is also best for that rare guy like me who had prostetitis for decades or for men who have significant stricture (unination problems).  Radiation can (it usually won't, but CAN) worsen urination issues later on. 

    I have much better urinary control AFTER surgery than before, due to preexisitng prostatitis and BEP/BPH.

    max

  • MK1965
    MK1965 Member Posts: 233 Member
    #29
    RobLee said:

    Were Your PCa treatment results what you expected

    MK - Thanks for the reminder.  I do remember starting that thread on CFN but just tried searching for it and the search always came back empty.  If you are able to find it, could you please post a link?  I'd appreciate it. 

    Sort of like a walk down memory lane.  It's always interesting to get a glimpse of what one's own state of mind was during a prior period of time.

    Can not post link

    Rob,

    for some reason I can not post link here to your tread from 4/24/17 on CFN but I can help you locate it.

    It is on page 16 somewhere in the middle of page.

    MK

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #30
    Tech70 said:

    Cost!

    I'm shocked at the $27,000 figure for your MRI if I'm reading that correctly.  I went for what was described in the radiologist's report as "Multiparametric multiplanar 3T MRI imaging of the pelvis with and without contrast"  The total amount billed Medicare, including drugs, was app. $5200.

     
    Agree

    In my area today, a CT now runs only around $3,000 or less, and even a PET is well under $10,00.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #31
    Steve1961 said:

    Wow here u go again scaring people

    how do u know that that often they miss higher grade tumors in biopsies ..reallly says who you...quit scaring people like you scared me a while back ...u don’t know what the hell you are talking about 

    Biopsy

    Steve1961,

    It is simply a statement of fact that biopsies fairly commonly miss existing cancers, and when they are wrong regarding volumn or Gleason, they always underestimate, never (virtually never) overestimating involvement or aggression.

    During my biopsy, the instrument "broke" just before the last core was pulled (#12). I had to wait for a tech to fix it, and then finished all 12 cores. The result ?  ALL cores showed no cancer, except the 12th.  

    I was told I had Stage 1 disease.  My DaVinci was not long thereafter (within a fefw weeks). After the gland was removed, the patholigist stated that I had Stage II disease.

    This upgrading is frequently reported here at this Board.

    There were no scare tactics involved.  A calm statement of clinical truths is not an attempt to frighten anyone; it is a sharing of potentially life saving information.

    max

  • RobLee
    RobLee Member Posts: 269 Member
    #32
    MK1965 said:

    Can not post link

    Rob,

    for some reason I can not post link here to your tread from 4/24/17 on CFN but I can help you locate it.

    It is on page 16 somewhere in the middle of page.

    MK

    Thanks MK

    The thread is here, for those that may be interested:

    https://www.cancerforums.net/threads/50741-Were-your-PCa-treatment-results-what-you-expected

  • PCaAware
    PCaAware Member Posts: 1
    #33
    Prostate Cancer Surgery or Radiation

    Prostate Cancer is as unique to you as is your fingerprint. We are all impacted in different ways.  We generally advise men to research the options and the long term consequences and move forward. Over time radiation and surgery can have the same effects on you or not. Its hard to tell what your outcome will be.  Once you decide be confident you have made the right decision.  In my own case I opted for surgery (Gleason 9) and i am glad i did as my PSA began to slowly rise. 5 years later my PSA registered in at 0.13. It was at that point i had the option to then undergo external beam radiation and Lupron. There a lot of options today to consider.  Some work on select patients while others do not.  Do what you belive is best.  Any of the major treatments surgery or radiatio (external beam or seeds ) can have consequences .  Treat the disease as you and your medical team see fit,  then move forward and enjoy living.  Dennis -- CEO  The National Prostate Cancer Awareness Foundation  

  • SantaZia
    SantaZia Member Posts: 68 Member
    #34
    Grinder said:

    Again, variables.

    The following lists the variables that can affect research outcomes for radiation . For some reason everyone is ignoring my statements on the importance of variables, and continue to quote research that is skewed by those variables not taken into account....

    "The incidence of radiation proctitis is not clear due to the lack of consensus on its definition and reporting methodologies. There is a general agreement that the incidence is likely related to the dose of radiation, area of exposure, method of delivery, and the use of cytoprotective agents. "

    Listed above are four variables that will affect the incidence of radiation proctitis, and the data collected that apoears to support the conclusions of the research.

    "External beam radiation studies have seen incidence rates of radiation proctitis range from 2% to 39% [7–10] depending upon the severity/grade of proctitis, whereas IMRT studies have seen incidence rates from 1% to 9% [11–13] and particle radiation therapy in the range of 1% [14]. Although particle radiation therapy seems to have a lower incidence of proctitis, it is limited by cost and only available at specialized facilities. The incidence of proctitis in patients treated with brachytherapy alone is 8% to 13% and up to 21% when used in combination with other modalities [15]."

    Incidence of radiation proctitis ranges anywhere from 2% to 39%!!! Why is that range so widely variant? Because of VARIABLES.

    Again, as I have said before, the most significant variable in successful nerve sparing surgery is the skill and experience of the surgeons. I am getting blue in the face trying to get this across... is there a better way to explain this? Are we going to keep playing dueling data without regard to the variables that are essential in any meaningful discussion about research?

    https://www.hindawi.com/journals/grp/2011/917941/

    Variables

    I have really enjoyed reading this discussion this morning.  I do a little research on disability and rehabilitation for work and after my PC diagnosis in Feb 18 I have had to do a lot more to understand my options (PSA 13.78 3+4). To me the most important thing is to be thoughtful in your decision making and consider each outcome possibliity. Consider your age, weight, sexual functioning and health as a baseline. None of the PC treatments are going to make you younger or improve your current sexual functioning.  I have a little scaring due to a TURP and long term catheter use so I am leaning towards proton treatment at MD Anderson. However surgery is still on the table. I have set a deadline of this May to make my decision.  I am a runner and just finished George Sheehan's Going the Distance book. He was called the running doctor.  He said everyone with PC hates their urologist.  I tend to agree after not having a PSA test from 2012 to 2018 based on the group think recommendation. Thank you guys for your debate.  I noticed on the Healhunlocked fourm the posts are a little more gentle. Be nice to each other we are all in this together.  

  • Clevelandguy
    Clevelandguy Member Posts: 1,208 Member
    #35
    Thumbs up

    Amen brother, good post.

    Dave 3+4

  • Magicsparkes
    Magicsparkes Member Posts: 19 Member
    #36
    hopeful and optimistic said:

    .

    I hope that the targete procedure that you had will be successful for you, however since prostate cancer can be mutifocal, the cancer can be elsewhere in the prostate, , since the  T3 MRI image is not able to detect micro cancers.

    If any more cancer is found during future review, will the facility re-laser the prostate, without additional cost?

    Everything Causes Cancer & the Sky is Falling

    Aloha Hopeful,

    I can have the procedure repeated, but there is a cost associated as insurance does not yet cover Focal Laser Ablation, (a repeated treatment is about the price of a good used car). Assuming the cancer has not spread, I could always fall back on the Da Vinci method and have a prostatectomy. So I have not lost anything except the visible cancer in the T3 MRI image. Should the cancer return, (I'll have annual T3 MRI and other work) my insurance will cover the 135k prostatectomy cost. Ah, but then again, so many of my doctors have been forthcoming and have said in no uncertain terms, "For every 37 men treated for prostate cancer only one life is saved." In other words, they don't have the science or know how to determine if the prostate cancer is even remotely aggressive. Therefore, to be safe, they tell men it is best to not take any chances. They encourage aggressive treatment. The message is loud and clear, It is better to have the prostate removed and just live with the consequences than to risk death by prostate related cancer. Maybe so, but I know I've bought myself at least another five years and then Brachy or radiation or some other therapy might be my best bet ... or maybe I'll live without a reoccurance and pass away from other causes. PC is notorious for growing slowly and the odds are in my favor - especially with regular / annual check ups! The point is, I made the best decision having the laser ablation. All men with PC should look at it and weigh all their options before making any formal decision. 

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