surgery or radiation?

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Comments

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #42
    hopeful and optimistic said:

    My best wishes for you

    I am glad that you did research so you could make a decision that you are comfortable with.....I hope that this will bring peace of mind to you....wishing you the very best.

     

    Best wishes for a successful outcome

     

    Bill (Mounty) and TP23

     

    Your exchanging experiences made me recall the time when I was diagnosed, back in 2000. I also confronted the dilemma in choosing a treatment. Interestingly, I was given the same choices as that of yours (2013) and the same “views” in all aspects including the “sequentials” (salvage radiation after surgery failure, etc, etc.). However I was confronting a low risk diagnosis.
    Not much has changed regarding the way doctors advice on radicals. These two forms of treatment are still the ones linked by most studies to cure, and in young guys like you (with long life spans ahead) these therapies are commonly recommended; however, the successes belong to cases of localized and contained cancer. This is also more common to low risk cases with low Gleason scores.

     

    In fact the first though it comes to us is to get rid of the whole tumour “scrapping” it out or “zapping” it whole with rays. We will accept anything proposed by a well spoken doctor without realizing that most of the procedures are based on “guessing”, and the choice leans through wards the higher percentage of successes of past experiences. We forget about the failures and the consequences we will have to endure and live with. In high risk cases one should recall that “debulking” makes part of the decision process by the doctors and such idea has nothing to do with intent at cure but with intent in extending life and continuing sequential therapies. Failure may follow failure and the effects will superimpose the ones already existent.
    Considerations to the Quality of Life in the initial decision process are important, and we need to think about the possibility of a life with the unwanted guest.

     

    I am very please for your exchanging opinions and believe you have followed the best way to get into a conclusion on a treatment. This will help many reading your threads, even if the situations differ.
    Your high risk status in particular, has been commented in this forum before but not to the extent you have done. I feel sorry for the lack of feedback from those G9 participants in regards to the accomplishments in their treatments. They would have been very useful to you and all us.

     

    I wish you both the best of lucks in your treatments. You have done your “work” excellently and your choices will be the best you could get. They will lead your cases to success.  SmileSmile

     

    Best wishes.

     

    VGama  Wink

     

  • mrspjd
    mrspjd Member Posts: 694 Member
    #43
    Mounty said:

    surgery vs. radiation decision

     

    It's been two weeks since I asked for help from this forum deciding whether surgery or radiation + hormone therapy is the best course of treatment for the prostate cancer I was diagnosed with in late April. After numerous medical consults and valuable advice from many of you and other friends, I've arrived at a decision about treatment. I’m going to describe this decision and the reasoning behind it with the hope this information may help others with similar cases of high grade localized prostate cancer.

     

    A brief summary of my recent medical history: I'm 61 and in very good health other than PCa. There's a family history of PCa (father and one brother).  Gradually escalating symptoms of urinary blockage for several months eventually led to bloodwork that produced a PSA reading of 34. A biopsy several weeks later detected 30 - 90% malignant cells in 14 out of 14 cores, all  Gleason grades of 4 + 4 or 4 + 5, leading to a Gleason score of 9 (4 + 5). A second read of the slides by a pathologist at a NCI Cancer Center was similar except that the fraction of malignant cells was increased to 50 – 100%. A bone scan and multiple CT scans have failed to detect metastatic disease in bones or in pelvic lymph nodes.

     

    I consulted with five doctors after receiving the diagnosis from the community practice urologist who performed the biopsy - three were surgeons and two were radiation oncologists. All three surgeons were Chairs of Urology at major academic medical centers, including an NCI-designated Comprehensive Cancer Center. One radiation oncologist was the Chair of Radiation Medicine at the NCI Comprehensive Cancer Center. The other radiation oncologist practices medicine in a community practice setting. I'm lucky to have insurance that pays for multiple consults (although I did have to turn down one recommended consult because it was out of my insurance network).

     

    I've also obtained an enormous amount of information from books, this forum and other internet sources that I trust (National Institutes of Health and other government websites and organizations such as the American Cancer Society) and from the primary medical literature - that is, peer-reviewed studies published in medical journals. In evaluating all this information I employed two criteria to define what for me would be an ideal treatment outcome, in order of importance: 1. long term disease-free survival; 2. a quality of life that includes the following ranked in importance to me - no urinary or bowel incontinence > no permanent loss of sexual ability > no long term side effects of hormone therapy such as diabetes, heart disease and breast enlargement (the last was a big one). In deciding on treatment I also considered logistical factors that mostly applied to radiation therapy, which would take place over a period of several weeks. These included the ability to be treated without a requirement to travel great distances each day or the need to arrange for temporary housing in a distant city for a period of many weeks.

     

    Initially one surgeon recommended surgery and two recommended radiation + hormone therapy. The radiation oncologists rendered a split decision, one for surgery and one for radiation + HT. Recently the arguments for radiation + hormone therapy became so compelling that all these doctors now agree this is the best course of action for me. Their reasoning is that the combination of high Gleason score, high PSA, large tumor volume and digital rectal exams performed since the biopsy that strongly suggest extraprostatic invasion of the tumor into surrounding tissues all argue that surgery would be unlikely to remove all of the tumor and would carry a high risk of urinary incontinence. The argument for radiation therapy + hormone therapy for treatment of localized advanced disease is in my opinion supported by the medical literature.  Although some studies suggest (based on statistical analyses) that surgery might be the better option, many of these studies have been criticized by other experts as flawed. Other studies more clearly point to a small but statistically significant advantage to radiation + hormone therapy.   It's important for anyone reading this post to keep in mind that all of these considerations specifically apply to localized (i.e., not metastatic) advanced disease (Gleason 8 - 10 with evidence for extra-prostatic extension), and not less advanced prostate cancer.

     

    Consequently, I have decided to pursue image-guided radiation therapy + hormone therapy at the NCI Comprehensive Cancer Center I visited for consults. I considered a number of other treatment modalities as well. These included brachytherapy (radioactive implants), high-intensity focused ultrasound (HIFU), Cyberknife and proton beam therapy. Although each of these modalities has proven successful in some cases, I ruled them out in my case for a variety of reasons, mostly related to a lack of a well-established track record for success for treating prostate cancer or because they were inappropriate for treatment of more advanced prostate cancer.

    Please keep in mind that I'm describing what I think is the best decision for me; the best decision for others would need to take into account factors that are unique to other individuals, in addition to those that might be common to my case. I'm very grateful to everyone who posted valuable information to this thread and to many others who posted valuable information to other threads as well, all of which helped me to reach this decision.   If I didn't know any better, based on what I've learned from this forum I would argue that prostate cancer mostly afflicts people (men and women) who represent the best of humanity. I will continue to post  to other threads but I do not plan to post to this thread again except to respond to  questions, which I would be happy to answer.

     

    Best wishes,

     

    Bill (Mounty is my beloved dog)

     

    Kudos

    Hi Bill,

     

    Welcome to the PCa forum.  I enjoyed reading your thoughtful and articulate posts.  Kudos for your insightful and enlightened perspective on PCa.  It’s obvious that you’ve taken some time to research and educate yourself about this insidious disease. 

     

    In April 2010, I posted a question like yours: “Open RP vs RT + Hormones for high volume PCa."  When all the diagnostic test findings, 2nd opinion clinical consults and expert pathology lab results were in, my husband’s PCa dx was determined to be T3 stage, high volume (>75%) and locally advanced (i.e. extra capsular extension or ECE).  These and other disease features of his PCa dx made his GS 3+4=7 a high risk case.  Together, before a tx decision was made, we did a ton of research 24/7 (at least that’s what it felt like!) for three months, including attending face to face PCa networking group meetings (where we received some excellent PCa info).  Ultimately, PJD’s tx decision process and rational were somewhat similar to yours.  I’m happy to share that my husband’s PSA is consistently low with no evidence of disease.  He is healthy and doing very well with no long term tx side effects.  We continue to enjoy life to the fullest and are hopeful for the future.  I wish the same for you and your wife.

     

    Congratulations on making a tx decision that is right for you, considering QoL priorities and PCa risk level. All the very best to you, your wife and family for a successful long term tx outcome.

     

    mrs pjd

    wife of a T3 stage PCa survivor

  • Mounty
    Mounty Member Posts: 42
    #44
    hopeful and optimistic said:

    My best wishes for you

    I am glad that you did research so you could make a decision that you are comfortable with.....I hope that this will bring peace of mind to you....wishing you the very best.

     

    best wishes

    Thanks Hopeful,

    I'm still at the very beginning of what promises to be a long and complicated process; I'll be looking forward to learning more things from you in the future.

    Best wishes,

    Bill

  • Mounty
    Mounty Member Posts: 42
    #45
    mrspjd said:

    Kudos

    Hi Bill,

     

    Welcome to the PCa forum.  I enjoyed reading your thoughtful and articulate posts.  Kudos for your insightful and enlightened perspective on PCa.  It’s obvious that you’ve taken some time to research and educate yourself about this insidious disease. 

     

    In April 2010, I posted a question like yours: “Open RP vs RT + Hormones for high volume PCa."  When all the diagnostic test findings, 2nd opinion clinical consults and expert pathology lab results were in, my husband’s PCa dx was determined to be T3 stage, high volume (>75%) and locally advanced (i.e. extra capsular extension or ECE).  These and other disease features of his PCa dx made his GS 3+4=7 a high risk case.  Together, before a tx decision was made, we did a ton of research 24/7 (at least that’s what it felt like!) for three months, including attending face to face PCa networking group meetings (where we received some excellent PCa info).  Ultimately, PJD’s tx decision process and rational were somewhat similar to yours.  I’m happy to share that my husband’s PSA is consistently low with no evidence of disease.  He is healthy and doing very well with no long term tx side effects.  We continue to enjoy life to the fullest and are hopeful for the future.  I wish the same for you and your wife.

     

    Congratulations on making a tx decision that is right for you, considering QoL priorities and PCa risk level. All the very best to you, your wife and family for a successful long term tx outcome.

     

    mrs pjd

    wife of a T3 stage PCa survivor

    Mrs. PJD.

    It's one thing for someone on the cusp of a T4 diagnosis (T3c) to learn from doctors and medical journals about abstract theoretical possibilities for a healthy future. It's far more meaningful  to hear concrete evidence from people like you about individuals with similar cases who actually achieve this outcome, such as your husband. You made me a very happy guy this morning and I'm grateful. I wish you and your husband continued success.

    Bill

  • Mounty
    Mounty Member Posts: 42
    #46
    VascodaGama said:

    Best wishes for a successful outcome

     

    Bill (Mounty) and TP23

     

    Your exchanging experiences made me recall the time when I was diagnosed, back in 2000. I also confronted the dilemma in choosing a treatment. Interestingly, I was given the same choices as that of yours (2013) and the same “views” in all aspects including the “sequentials” (salvage radiation after surgery failure, etc, etc.). However I was confronting a low risk diagnosis.
    Not much has changed regarding the way doctors advice on radicals. These two forms of treatment are still the ones linked by most studies to cure, and in young guys like you (with long life spans ahead) these therapies are commonly recommended; however, the successes belong to cases of localized and contained cancer. This is also more common to low risk cases with low Gleason scores.

     

    In fact the first though it comes to us is to get rid of the whole tumour “scrapping” it out or “zapping” it whole with rays. We will accept anything proposed by a well spoken doctor without realizing that most of the procedures are based on “guessing”, and the choice leans through wards the higher percentage of successes of past experiences. We forget about the failures and the consequences we will have to endure and live with. In high risk cases one should recall that “debulking” makes part of the decision process by the doctors and such idea has nothing to do with intent at cure but with intent in extending life and continuing sequential therapies. Failure may follow failure and the effects will superimpose the ones already existent.
    Considerations to the Quality of Life in the initial decision process are important, and we need to think about the possibility of a life with the unwanted guest.

     

    I am very please for your exchanging opinions and believe you have followed the best way to get into a conclusion on a treatment. This will help many reading your threads, even if the situations differ.
    Your high risk status in particular, has been commented in this forum before but not to the extent you have done. I feel sorry for the lack of feedback from those G9 participants in regards to the accomplishments in their treatments. They would have been very useful to you and all us.

     

    I wish you both the best of lucks in your treatments. You have done your “work” excellently and your choices will be the best you could get. They will lead your cases to success.  SmileSmile

     

    Best wishes.

     

    VGama  Wink

     

    Thanks VGama,

    I was hoping you would weigh in to this thread with your good advice at some point.

    The few posts to this thread from other patients initially diagnosed with advanced PCa was also a little surprising to me. There are fewer patients in this category though. Of course some of them may also need to focus on treatment. 

    In any case, your comment reinforced the notion that it might be useful for other advanced PCa patients to know how someone with a similar case is faring beyond the initial treatment decision. As you probably know there are several patients in this category who recently joined the forum after recent diagnoses.  In the future I'll post my information as it develops to a new thread (at the moment there's a lull in activity while I wait for radiation to begin).

    Given our remarkably similar cases, trading information with Tp has been especially useful to both of us. Tp and I are also trading emails about our various exploits unrelated to cancer but I think the plan is to continue to trade notes on our cases publicly with the idea this information might be useful to others.

    I'm guessing you are not the famous Vasco da Gama I learned about in grade school but I'm wondering if you are also from Portugal, one of my favorite places on earth.

    Best wishes,

    Bill

     

  • mrspjd
    mrspjd Member Posts: 694 Member
    #47
    Mounty said:

    Mrs. PJD.

    It's one thing for someone on the cusp of a T4 diagnosis (T3c) to learn from doctors and medical journals about abstract theoretical possibilities for a healthy future. It's far more meaningful  to hear concrete evidence from people like you about individuals with similar cases who actually achieve this outcome, such as your husband. You made me a very happy guy this morning and I'm grateful. I wish you and your husband continued success.

    Bill

    Locally advanced T3 staging

     

    Bill,

    Re your post "...someone on the cusp of a T4 diagnosis (T3c)..."  If that’s you, I wonder how your T3 clinical staging was determined and the extent of ECE.  Although you mentioned an MRI was scheduled, it’s unclear if you had an MRI and received results.  Since your “decision” post only mentions results of a bone scan and CT, not an MRI, perhaps this was an oversight.  There’s a difference between an MRI and an EMRI (endorectal).  In some high risk cases (like my husband's), conventional bone scan & pelvic CT and even a standard MRI may be negative for distal & local mets. A 3Tesla EMRI may identify locally advanced disease in cases where high volume PCa tumor burden is present.  According to the NCI "...MRI with an endorectal coil appears to be more accurate for identification of organ-confined and extra capsular disease."

    If you're clinically staged as T3c with locally advanced PCa, the extent of spread, i.e. seminal vesicle(s), and if local lymph node involvement is found/suspected, this info is important, especially with regard to the RT dose (Gy) and target planning by your RO and medical physicist/dosimetrist.

    IMHO, with any GS =/> 7, along with features such as a high volume tumor burden, nodule or firmness found @ DRE, and PNI (peri-neural invasion) on biopsy, there may be a greater likelihood for local or distal mets or undetectable micromets.  While those PCa cases are considered high risk, not all are initially locally/distally advanced.  If caught early, some cases may still be organ confined.  When diagnostic test findings confirm T3 locally advanced disease in high risk cases, IMHO a well planned aggressive RT tx protocol is critical for best outcome—ideally, at a Center of Excellence using the latest modern technology/medical equipment by an experienced and skilled medical team. 

    Effective RT dosing (Gy) & extent of targeted areas are important factors to consider in primary RT txs. For high risk T3 cases like my husband’s, we found that there was a range of opinions among PCa medical experts on these issues.  You may wish to research sites like PubMed for peer reviewed medical/scientific studies (such as those by M. Zelefsky) on safe/effective RT dosing for high risk PCa.  Also suggest that you peruse info re extent of whole pelvic RT (such as by Mack Roach). Then, you can form your own opinions and, along with your medical team, determine the best RT protocol for your tx.  I'm sorry that your father and brother both have had a previous PCa dx.  I wonder what their PCa experiences were and what insight you might have gained from them about your own dx and upcoming tx.  

  • yankeefan
    yankeefan Member Posts: 69
    #48
    Mounty said:

    surgery vs. radiation decision

     

    It's been two weeks since I asked for help from this forum deciding whether surgery or radiation + hormone therapy is the best course of treatment for the prostate cancer I was diagnosed with in late April. After numerous medical consults and valuable advice from many of you and other friends, I've arrived at a decision about treatment. I’m going to describe this decision and the reasoning behind it with the hope this information may help others with similar cases of high grade localized prostate cancer.

     

    A brief summary of my recent medical history: I'm 61 and in very good health other than PCa. There's a family history of PCa (father and one brother).  Gradually escalating symptoms of urinary blockage for several months eventually led to bloodwork that produced a PSA reading of 34. A biopsy several weeks later detected 30 - 90% malignant cells in 14 out of 14 cores, all  Gleason grades of 4 + 4 or 4 + 5, leading to a Gleason score of 9 (4 + 5). A second read of the slides by a pathologist at a NCI Cancer Center was similar except that the fraction of malignant cells was increased to 50 – 100%. A bone scan and multiple CT scans have failed to detect metastatic disease in bones or in pelvic lymph nodes.

     

    I consulted with five doctors after receiving the diagnosis from the community practice urologist who performed the biopsy - three were surgeons and two were radiation oncologists. All three surgeons were Chairs of Urology at major academic medical centers, including an NCI-designated Comprehensive Cancer Center. One radiation oncologist was the Chair of Radiation Medicine at the NCI Comprehensive Cancer Center. The other radiation oncologist practices medicine in a community practice setting. I'm lucky to have insurance that pays for multiple consults (although I did have to turn down one recommended consult because it was out of my insurance network).

     

    I've also obtained an enormous amount of information from books, this forum and other internet sources that I trust (National Institutes of Health and other government websites and organizations such as the American Cancer Society) and from the primary medical literature - that is, peer-reviewed studies published in medical journals. In evaluating all this information I employed two criteria to define what for me would be an ideal treatment outcome, in order of importance: 1. long term disease-free survival; 2. a quality of life that includes the following ranked in importance to me - no urinary or bowel incontinence > no permanent loss of sexual ability > no long term side effects of hormone therapy such as diabetes, heart disease and breast enlargement (the last was a big one). In deciding on treatment I also considered logistical factors that mostly applied to radiation therapy, which would take place over a period of several weeks. These included the ability to be treated without a requirement to travel great distances each day or the need to arrange for temporary housing in a distant city for a period of many weeks.

     

    Initially one surgeon recommended surgery and two recommended radiation + hormone therapy. The radiation oncologists rendered a split decision, one for surgery and one for radiation + HT. Recently the arguments for radiation + hormone therapy became so compelling that all these doctors now agree this is the best course of action for me. Their reasoning is that the combination of high Gleason score, high PSA, large tumor volume and digital rectal exams performed since the biopsy that strongly suggest extraprostatic invasion of the tumor into surrounding tissues all argue that surgery would be unlikely to remove all of the tumor and would carry a high risk of urinary incontinence. The argument for radiation therapy + hormone therapy for treatment of localized advanced disease is in my opinion supported by the medical literature.  Although some studies suggest (based on statistical analyses) that surgery might be the better option, many of these studies have been criticized by other experts as flawed. Other studies more clearly point to a small but statistically significant advantage to radiation + hormone therapy.   It's important for anyone reading this post to keep in mind that all of these considerations specifically apply to localized (i.e., not metastatic) advanced disease (Gleason 8 - 10 with evidence for extra-prostatic extension), and not less advanced prostate cancer.

     

    Consequently, I have decided to pursue image-guided radiation therapy + hormone therapy at the NCI Comprehensive Cancer Center I visited for consults. I considered a number of other treatment modalities as well. These included brachytherapy (radioactive implants), high-intensity focused ultrasound (HIFU), Cyberknife and proton beam therapy. Although each of these modalities has proven successful in some cases, I ruled them out in my case for a variety of reasons, mostly related to a lack of a well-established track record for success for treating prostate cancer or because they were inappropriate for treatment of more advanced prostate cancer.

    Please keep in mind that I'm describing what I think is the best decision for me; the best decision for others would need to take into account factors that are unique to other individuals, in addition to those that might be common to my case. I'm very grateful to everyone who posted valuable information to this thread and to many others who posted valuable information to other threads as well, all of which helped me to reach this decision.   If I didn't know any better, based on what I've learned from this forum I would argue that prostate cancer mostly afflicts people (men and women) who represent the best of humanity. I will continue to post  to other threads but I do not plan to post to this thread again except to respond to  questions, which I would be happy to answer.

     

    Best wishes,

     

    Bill (Mounty is my beloved dog)

     

    that was a good post.....

    hope it all works out....looks like you've done about all you could do to come to your conclusion....all the best....

    p.s. say hi to mounty too....dogs are a great friend for sure.....

  • Mounty
    Mounty Member Posts: 42
    #49
    mrspjd said:

    Locally advanced T3 staging

     

    Bill,

    Re your post "...someone on the cusp of a T4 diagnosis (T3c)..."  If that’s you, I wonder how your T3 clinical staging was determined and the extent of ECE.  Although you mentioned an MRI was scheduled, it’s unclear if you had an MRI and received results.  Since your “decision” post only mentions results of a bone scan and CT, not an MRI, perhaps this was an oversight.  There’s a difference between an MRI and an EMRI (endorectal).  In some high risk cases (like my husband's), conventional bone scan & pelvic CT and even a standard MRI may be negative for distal & local mets. A 3Tesla EMRI may identify locally advanced disease in cases where high volume PCa tumor burden is present.  According to the NCI "...MRI with an endorectal coil appears to be more accurate for identification of organ-confined and extra capsular disease."

    If you're clinically staged as T3c with locally advanced PCa, the extent of spread, i.e. seminal vesicle(s), and if local lymph node involvement is found/suspected, this info is important, especially with regard to the RT dose (Gy) and target planning by your RO and medical physicist/dosimetrist.

    IMHO, with any GS =/> 7, along with features such as a high volume tumor burden, nodule or firmness found @ DRE, and PNI (peri-neural invasion) on biopsy, there may be a greater likelihood for local or distal mets or undetectable micromets.  While those PCa cases are considered high risk, not all are initially locally/distally advanced.  If caught early, some cases may still be organ confined.  When diagnostic test findings confirm T3 locally advanced disease in high risk cases, IMHO a well planned aggressive RT tx protocol is critical for best outcome—ideally, at a Center of Excellence using the latest modern technology/medical equipment by an experienced and skilled medical team. 

    Effective RT dosing (Gy) & extent of targeted areas are important factors to consider in primary RT txs. For high risk T3 cases like my husband’s, we found that there was a range of opinions among PCa medical experts on these issues.  You may wish to research sites like PubMed for peer reviewed medical/scientific studies (such as those by M. Zelefsky) on safe/effective RT dosing for high risk PCa.  Also suggest that you peruse info re extent of whole pelvic RT (such as by Mack Roach). Then, you can form your own opinions and, along with your medical team, determine the best RT protocol for your tx.  I'm sorry that your father and brother both have had a previous PCa dx.  I wonder what their PCa experiences were and what insight you might have gained from them about your own dx and upcoming tx.  

    Mrs. PJD,

    The MRI has not yet been performed but is scheduled for later today (Monday, May 20) at a NCI CCC. It was scheduled earlier but I postponed it until I was able to confirm that 3-tesla EMRI technology is available at this institution (otherwise I would have gone elsewhere). The ECE determination and T3c staging were based in part on DREs by two urologists, one at this institution and one at another high patient-volume academic center 100 miles down the road. These two urologists compared notes and both agreed that the combination of Gleason 9, high tumor volume, PNI (I did not mention this finding earlier but this was  the read of the second group of pathologists who looked at the cores) and what they found in their DREs puts the odds of ECE at 100%, even in the absence of the MRI data. I don't know whether an ECE determination can be made in the absence of imaging but I guess I'll find out tonight if they were right.

    Frankly, I'm suffering from prostate cancer information fatigue and I was planning to let the radiation oncologists and physicists prepare a detailed plan without further research and input from me. Your post convinced me that I can't stop here.  I'll track down the studies by Zelefsky and Roach and get back on PUBMED to track down others as well - if you have any additional suggestions of relevant authors I would be grateful if you could pass them on.

    I have three questions I'm hoping you can answer if you can spare a little more time. First, do you think it would be worthwhile to pursue a more thorough assessment of whether metastasis has occurred, by PET for example? I understand how it might help to develop the RT plan if pelvic lymph nodes and/or seminal vesicles are found to have disease that escaped detection by the CT and MRI scans but my understanding is that radiation is planned for these areas regardless. An underlying question is this: what difference would it make at this point if distant metastases are found? I'm already on hormone therapy and so it's not clear how this would impact the treatment plan. Third, would you mind if I emailed you a few questions regarding the specific cancer center where I plan to be treated? Perhaps you don't have access to this sort of information and if so, not a problem, but if you do it would be helpful.

    Thanks very much again. The information in this post was enormously helpful and could very well make a big difference in outcome for me.

  • mrspjd
    mrspjd Member Posts: 694 Member
    #50
    Mounty said:

    Mrs. PJD,

    The MRI has not yet been performed but is scheduled for later today (Monday, May 20) at a NCI CCC. It was scheduled earlier but I postponed it until I was able to confirm that 3-tesla EMRI technology is available at this institution (otherwise I would have gone elsewhere). The ECE determination and T3c staging were based in part on DREs by two urologists, one at this institution and one at another high patient-volume academic center 100 miles down the road. These two urologists compared notes and both agreed that the combination of Gleason 9, high tumor volume, PNI (I did not mention this finding earlier but this was  the read of the second group of pathologists who looked at the cores) and what they found in their DREs puts the odds of ECE at 100%, even in the absence of the MRI data. I don't know whether an ECE determination can be made in the absence of imaging but I guess I'll find out tonight if they were right.

    Frankly, I'm suffering from prostate cancer information fatigue and I was planning to let the radiation oncologists and physicists prepare a detailed plan without further research and input from me. Your post convinced me that I can't stop here.  I'll track down the studies by Zelefsky and Roach and get back on PUBMED to track down others as well - if you have any additional suggestions of relevant authors I would be grateful if you could pass them on.

    I have three questions I'm hoping you can answer if you can spare a little more time. First, do you think it would be worthwhile to pursue a more thorough assessment of whether metastasis has occurred, by PET for example? I understand how it might help to develop the RT plan if pelvic lymph nodes and/or seminal vesicles are found to have disease that escaped detection by the CT and MRI scans but my understanding is that radiation is planned for these areas regardless. An underlying question is this: what difference would it make at this point if distant metastases are found? I'm already on hormone therapy and so it's not clear how this would impact the treatment plan. Third, would you mind if I emailed you a few questions regarding the specific cancer center where I plan to be treated? Perhaps you don't have access to this sort of information and if so, not a problem, but if you do it would be helpful.

    Thanks very much again. The information in this post was enormously helpful and could very well make a big difference in outcome for me.

    Opinions re T3

     

    Bill,

     

    Unfortunately, I have no hard and fast “answers” to your questions—only opinions based on what I’ve learned with my husband over the last three years.  With everything PCa, there is a wide variance of opinion among medical professionals and non-professionals alike.  As you know, even study data may be interpreted differently by different people. 

     

    I understand all too well the PCa info overload fatigue syndrome after initial dx.  Seems like all we did was eat-breathe-sleep (if possible) PCa.  My husband and I continue to learn about PCa.  The education process is never ending but it does get less intense.  I actually like reading PCa medical literature now.  With PJD’s T3 high risk PCa dx, and with three grown sons, we’re not naïve, but we remain hopeful and actively engaged in the face to face PCa community.  I have posted frequently to this forum in the past and some questions may be addressed in previous posts.  Here are some thoughts about the questions you asked above: 

     

    In the absence of diagnostic imaging that confirms ECE, PCa medical professionals may determine that ECE is suspected based on high risk PCa features, including those confirmed by an expert 2nd opinion path lab analysis on biopsy cores.  EMRI results, sometimes along with a CDU, may validate that ECE suspicion.  It did in PJD’s situation.  If local LN involvement is suspected due to inconclusive imaging studies, a lymph node biopsy may be preformed.  The findings may or may not change the RT tx protocol.

     

    If you’re having an EMRI later today and obtaining results the same day as you indicated, I’m impressed by your medical team.  It took a few days or longer for us to have the imaging results read, interpreted and a report generated.  Keep in mind that it’s possible that the ADT you started may have already begun to shrink tumor cells thus making the EMRI findings inconclusive or negative (that could be a good thing).  I’m a little confused about how/why the RO and dosimetrist are preparing a detailed tx plan without first considering the EMRI results. Perhaps I misunderstood or they didn’t feel the results would impact their tx plan.  PJD’s EMRI results influenced his RT tx decision and protocol.  

     

    You’ll be able to access the work of other relevant authors of related PCa studies when you search PubMed separately for Zelefsky and Roach. 

     

    The decision to pursue a “more thorough” diagnostic imaging assessment (not really sure what you mean by “more thorough”) will be based on the results of your EMRI and, possibly a CDU.  The F-18 sodium CT/PET (bone) and the C-11 Choline PET (soft organs/tissue) are usually indicated in cases of recurrence in the context of rising PSA when primary, adjuvant and/or salvage txs have failed.  IMO, this may change in the future and the tests may be offered to newly dx’d high risk patients sooner than later.  However, you can ask your PCa oncologist about this and even request the F-18 PET/CT.  Currently, the C-11 Choline PET (non-acetate) is only offered at the Mayo Clinic in MN and it’s somewhat experimental.  (It’s best to be off ADT for that test.) 

     

    Re your “…understanding that radiation is planned for these areas regardless.”  Perhaps, but we learned that with PCa you don’t “assume” or take anything for granted.  Ask questions; confirm answers (opinions) by continuing with your own research.  You are your own best medical advocate.  Obtain written copies of everything—doctors meeting notes, imaging tests and results, path reports, etc.

     

    Take a deep breath, exhale slowly, and repeat as necessary.  Include your wife.  Things have a way of working out. As trite as that may sound, trust me, they will.

     

    Be well.

  • Mounty
    Mounty Member Posts: 42
    #51
    mrspjd said:

    Opinions re T3

     

    Bill,

     

    Unfortunately, I have no hard and fast “answers” to your questions—only opinions based on what I’ve learned with my husband over the last three years.  With everything PCa, there is a wide variance of opinion among medical professionals and non-professionals alike.  As you know, even study data may be interpreted differently by different people. 

     

    I understand all too well the PCa info overload fatigue syndrome after initial dx.  Seems like all we did was eat-breathe-sleep (if possible) PCa.  My husband and I continue to learn about PCa.  The education process is never ending but it does get less intense.  I actually like reading PCa medical literature now.  With PJD’s T3 high risk PCa dx, and with three grown sons, we’re not naïve, but we remain hopeful and actively engaged in the face to face PCa community.  I have posted frequently to this forum in the past and some questions may be addressed in previous posts.  Here are some thoughts about the questions you asked above: 

     

    In the absence of diagnostic imaging that confirms ECE, PCa medical professionals may determine that ECE is suspected based on high risk PCa features, including those confirmed by an expert 2nd opinion path lab analysis on biopsy cores.  EMRI results, sometimes along with a CDU, may validate that ECE suspicion.  It did in PJD’s situation.  If local LN involvement is suspected due to inconclusive imaging studies, a lymph node biopsy may be preformed.  The findings may or may not change the RT tx protocol.

     

    If you’re having an EMRI later today and obtaining results the same day as you indicated, I’m impressed by your medical team.  It took a few days or longer for us to have the imaging results read, interpreted and a report generated.  Keep in mind that it’s possible that the ADT you started may have already begun to shrink tumor cells thus making the EMRI findings inconclusive or negative (that could be a good thing).  I’m a little confused about how/why the RO and dosimetrist are preparing a detailed tx plan without first considering the EMRI results. Perhaps I misunderstood or they didn’t feel the results would impact their tx plan.  PJD’s EMRI results influenced his RT tx decision and protocol.  

     

    You’ll be able to access the work of other relevant authors of related PCa studies when you search PubMed separately for Zelefsky and Roach. 

     

    The decision to pursue a “more thorough” diagnostic imaging assessment (not really sure what you mean by “more thorough”) will be based on the results of your EMRI and, possibly a CDU.  The F-18 sodium CT/PET (bone) and the C-11 Choline PET (soft organs/tissue) are usually indicated in cases of recurrence in the context of rising PSA when primary, adjuvant and/or salvage txs have failed.  IMO, this may change in the future and the tests may be offered to newly dx’d high risk patients sooner than later.  However, you can ask your PCa oncologist about this and even request the F-18 PET/CT.  Currently, the C-11 Choline PET (non-acetate) is only offered at the Mayo Clinic in MN and it’s somewhat experimental.  (It’s best to be off ADT for that test.) 

     

    Re your “…understanding that radiation is planned for these areas regardless.”  Perhaps, but we learned that with PCa you don’t “assume” or take anything for granted.  Ask questions; confirm answers (opinions) by continuing with your own research.  You are your own best medical advocate.  Obtain written copies of everything—doctors meeting notes, imaging tests and results, path reports, etc.

     

    Take a deep breath, exhale slowly, and repeat as necessary.  Include your wife.  Things have a way of working out. As trite as that may sound, trust me, they will.

     

    Be well.

    Thanks Mrs. PJD,

    Your discussion of the ECE read was helpful.  The question whether this could be accomplished without an MRI was in response to your earlier post and others that seemed to suggest this was not possible, and I'm happy to hear it is. I mostly wanted to know if these docs were taking non-standard approaches to diagnosis. The fact is, they wanted the MRI performed earlier but things kept getting in the way.

    By "more thorough diagnostic imaging assessment" I meant using technology other than CT scans and MRI scans. Your discussion of imaging confirms my understanding that PET and other approaches are often  employed for recurrent disease, although I do understand that some doctors employ them for initial staging as well.

    My medical team is good but not so good that they could arrange for a MRI read at 10 P.M. in the evening.  In fact I meant "tonight" figuratively since this is when the scan took place. I'll receive a copy of the report in a few hours and will meet with the urologist soon after.

    You're serving a very useful function by encouraging me and other patients and their spouses to not become lazy and complacent in dealing with our  prostate cancer. This was a good lesson for me. It's even more important now. My tumor (I still find it difficult to say this phrase!) appears to have transitioned into a rare androgen-independent tumor, something that rarely happens (as I think you know) this early into ADT. I fully understand the implications if this is confirmed. So now I have a whole new set of questions to research.  I'll continue posting what I learn.

    Very best wishes, and thanks again,

    Bill

  • Mounty
    Mounty Member Posts: 42
    #52
    yankeefan said:

    that was a good post.....

    hope it all works out....looks like you've done about all you could do to come to your conclusion....all the best....

    p.s. say hi to mounty too....dogs are a great friend for sure.....

    Thanks Yankeefan,

    I'm embarrassed to tell you that Mounty's name actually is Monty, which I mispelled. I have had  great friends over the years, but none so loyal as Monty - I mean, none of my other friends including my wife were willing to lick my ears (maybe I'm running around with the wrong crowd).

    Like many others, your posts to this forum have been really helpful to me.

    Best wishes,

    Bill

     

     

  • Samsungtech1
    Samsungtech1 Member Posts: 351
    #53
    Treatments

    Mounty,

     

    If it has gone that viral then it is not good.  I am sorry.  We never know where life will lead us.  Most Dr.s will not operate with this.  Unfortunately should RT and HT fail it is over.  You should be looking at trials.  There seems to be more, and more every couple months.  I have mentioned before that my Onc, Dr Tillinghast, said it either goes to the bone, or the organs.  Most men with your results would already have pain in the bones.  It might be that it is going to the organs.  I do not believe the pain in organs is as bad as the bones.  Depending on which organ it goes to is something you might find out if it goes that way. Your Onc should be testing you at leastevery three months with PET, and CT scans.  My Urologist did not believe in Prostate cancer metastisizing as soon as it started.  When my lungs started burning I went to the ER and paid for my X-ray.  Dr.'s are great, but you are the only one who can choose your path.  Good Luck!

     

    Mike

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