Just Diagnosed.....

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Uh_Oh said:

    Thanks

    I appreciate the thoughts here. I guess my main concern is the "not knowing" if the cancer is worse than the biopsy was able to find. I'm mostly coming into the acceptance that I'll just have it removed. While not particlarly happy with that decision, I feel it's less worrisome to me than always thinking about this thing inside of me. I haven't made the appointment yet, cuz I'm a big CHICKEN!!!

    Ideal

    Uh-Oh,

    PCa is the best cancer to have for people who are (your term) "chickens," and can't decide on a treatment. It is usually indolent and very slow-moving.

    However, cancer by definiton is "abnormally rapidly dividing cells."  That is how and why chemo works -- it focuses only on rapidly dividing cells.  Hair and the stomach lining are also naturally very fast growing, which is why chemo kills hair and causes nausea.

    PCa grows slowly, but it does grow.  You can take a long time to decide, but in most cases, a man can't take forever.

    .

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member

    SBRT, 7 year study, quality of life and toxicity

    http://csn.cancer.org/node/291691

     

    OBJECTIVES: Stereotactic body radiation therapy (SBRT) yields excellent disease control for low- and intermediate-risk prostate cancer by delivering high doses of radiation in a small number of fractions.

    Our report presents a 7-year update on treatment toxicity and quality of life (QOL) from 515 patients treated with prostate SBRT.

    METHODS: From 2006 to 2009, 515 patients with clinically localized, low-, intermediate-, and high-risk prostate cancer were treated with SBRT using Cyberknife technology. Treatment consisted of 35-36.25 Gy in 5 fractions. Seventy-two patients received hormone therapy. Toxicity was assessed at each follow-up visit using the expanded prostate cancer index composite (EPIC) questionnaire and the radiation therapy oncology group urinary and rectal toxicity scale.

    RESULTS: Median follow-up was 72 months. The actuarial 7-year freedom from biochemical failure was 95.8, 89.3, and 68.5% for low-, intermediate-, and high-risk groups, respectively (p < 0.001). No patients experienced acute Grade 3 or 4 acute complications. Fewer than 5% of patients had any acute Grade 2 urinary or rectal toxicity. Late toxicity was low, with Grade 2 rectal and urinary toxicity of 4 and 9.1%, respectively, and Grade 3 urinary toxicity of 1.7%. Mean EPIC urinary and bowel QOL declined at 1 month post-treatment, returned to baseline by 2 years and remained stable thereafter. EPIC sexual QOL declined by 23% at 6-12 months and remained stable afterwards. Of patients potent at baseline evaluation, 67% remained potent at last follow-up.

    CONCLUSION: This study suggests that SBRT, when administered to doses of 35-36.25 Gy, is efficacious and safe. With long-term follow-up in our large patient cohort, we continue to find low rates of late toxicity and excellent rates of biochemical control.

    Written by: 
    Katz AJ, Kang J.   Are you the author? 
    Flushing Radiation Oncology Services, Flushing, NY, USA; Department of Medicine, NYU Langone Medical Center, New York, NY, USA.

     

    Reference: Front Oncol. 2014 Oct 28;4:301. 
    doi: 10.3389/fonc.2014.00301

    PubMed Abstract
    PMID: 25389521

    UroToday.com Prostate Cancer Section

    Good assessment

    Uh-Oh,

    In reference to hopeful and optimisitc's article above on Cyberknife assessments:

    Be aware that CyberKnife is a form of hypofractionated radiation, which simply means Image Guided (IGRT or IMRT) radiation delivered in fewer (but larger) individual doses.  IGRT and IMRT typically take 30 to 40 treatments (daily visits) to deliver 76 or more Gray (abbreviated "Gr") of radiation, where as Cyberknife can be done in one week or so. The radiation oncologist with whom I discussed RT proposed that I get IGRT over 38 sessions, for 76 Gray, for instance (2 Gray per treatment).  He told my wife and I that he is not a CyberKnife fan, for reasons that he mentioned to us. 

    Everything I have read in Journal articles says there is essentially parity, or equivalence, in IMRT/IGRT, and Cyberknife.  Both are excellent choices, with excellent outcomes.  I am in no way "against" CyberKnife, just sharing what I have come across.

    Dr. Peter Scardino, head of Surgery at Sloan-Kettering Cancer Center, is seemingly not a Cyberknife fan. He writes in his Dr Peter Scardino's Prostate Book (Revised ed, 2010) the following:

    Cyberknife is a commercially produced, proprietary (private) technology, meaning it is a particular company's brand of IMRT.  It is not, as the name implies, a surgical proceedure, and no knife is involved. The company that developed and is aggressively marketing this device uses it to administer hypofractionated radiation doses, meaning the therapy is delivered in a few weeks instead of the standard eight or nine weeks. Knowledgeable radiotherapists prefer standard IMRT to the CyberKnife variation for prostate cancer therapy.   (Page 335)

     

    .

     

  • Uh_Oh
    Uh_Oh Member Posts: 17

    Ideal

    Uh-Oh,

    PCa is the best cancer to have for people who are (your term) "chickens," and can't decide on a treatment. It is usually indolent and very slow-moving.

    However, cancer by definiton is "abnormally rapidly dividing cells."  That is how and why chemo works -- it focuses only on rapidly dividing cells.  Hair and the stomach lining are also naturally very fast growing, which is why chemo kills hair and causes nausea.

    PCa grows slowly, but it does grow.  You can take a long time to decide, but in most cases, a man can't take forever.

    .

     

    Right Max.....

    I decided to go the surgery route. I'm awaiting a return call from doc's surgical coordinator to set up a date. It'll probably be about 2 months out or so before I can get in. I'm NOT looking forward to it, but I feel I need to put this chapter behind me and, hopefully, my relatively young age will be a "plus" for my recovery. In the meantime, I plan to use the time until then to get some exercise in, lose a few pounds, and prepare. My uncle just turned 73. He had his surgery in 1997 and his last PSA reading was .001, so hopefully I inherited _that_ part of the "gene equation" too!

     

    Like you said, "a man can't take forever!"

     

    Ron

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member

    Good assessment

    Uh-Oh,

    In reference to hopeful and optimisitc's article above on Cyberknife assessments:

    Be aware that CyberKnife is a form of hypofractionated radiation, which simply means Image Guided (IGRT or IMRT) radiation delivered in fewer (but larger) individual doses.  IGRT and IMRT typically take 30 to 40 treatments (daily visits) to deliver 76 or more Gray (abbreviated "Gr") of radiation, where as Cyberknife can be done in one week or so. The radiation oncologist with whom I discussed RT proposed that I get IGRT over 38 sessions, for 76 Gray, for instance (2 Gray per treatment).  He told my wife and I that he is not a CyberKnife fan, for reasons that he mentioned to us. 

    Everything I have read in Journal articles says there is essentially parity, or equivalence, in IMRT/IGRT, and Cyberknife.  Both are excellent choices, with excellent outcomes.  I am in no way "against" CyberKnife, just sharing what I have come across.

    Dr. Peter Scardino, head of Surgery at Sloan-Kettering Cancer Center, is seemingly not a Cyberknife fan. He writes in his Dr Peter Scardino's Prostate Book (Revised ed, 2010) the following:

    Cyberknife is a commercially produced, proprietary (private) technology, meaning it is a particular company's brand of IMRT.  It is not, as the name implies, a surgical proceedure, and no knife is involved. The company that developed and is aggressively marketing this device uses it to administer hypofractionated radiation doses, meaning the therapy is delivered in a few weeks instead of the standard eight or nine weeks. Knowledgeable radiotherapists prefer standard IMRT to the CyberKnife variation for prostate cancer therapy.   (Page 335)

     

    .

     

    CK is NOT the same as IMRT/IGRT

    Scardino's comment was made in 2010 -- 5 years ago -- and IMO his opinion is severely outdated and does not take into account recent studies of CK's effectiveness.

    While CK and IMRT/IGRT both deliver radiation in hypofractionated doses (CK in fewer and higher doses than IMRT/IGRT) the greatest advtange of CK is the superior mapping technology used to reduce the potential for any collateral tissue damage caused by radiation delivery.  The radiation levels used in CK was based on the delivery of radiation via HDR BT -- high dose rate brachytherapy.  CK's techonolgy allows 3D mapping and radiation delivery to the sub-mm level which almost entirely reduces the possibility of such damage which in turn substantialy reduces the possibility of ED, incontience, etc, which are more likely with HDR BT and IMRT/IGRT because of their mapping/delivery limitations.

    Bottom line, even prior studies indicate that survival rates are not better w/CK than w/surgery or IMRT/IGRT, the quality of life benefits of using CK (substantially reduced likelihoold of ED, incontinence, etc. over other methods) is reason enough to choose CK over the other technologies.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member

    CK is NOT the same as IMRT/IGRT

    Scardino's comment was made in 2010 -- 5 years ago -- and IMO his opinion is severely outdated and does not take into account recent studies of CK's effectiveness.

    While CK and IMRT/IGRT both deliver radiation in hypofractionated doses (CK in fewer and higher doses than IMRT/IGRT) the greatest advtange of CK is the superior mapping technology used to reduce the potential for any collateral tissue damage caused by radiation delivery.  The radiation levels used in CK was based on the delivery of radiation via HDR BT -- high dose rate brachytherapy.  CK's techonolgy allows 3D mapping and radiation delivery to the sub-mm level which almost entirely reduces the possibility of such damage which in turn substantialy reduces the possibility of ED, incontience, etc, which are more likely with HDR BT and IMRT/IGRT because of their mapping/delivery limitations.

    Bottom line, even prior studies indicate that survival rates are not better w/CK than w/surgery or IMRT/IGRT, the quality of life benefits of using CK (substantially reduced likelihoold of ED, incontinence, etc. over other methods) is reason enough to choose CK over the other technologies.

    Most commonly, IGRT is

    Most commonly, IGRT is fractionated, but not hypofractionated.  My radiation oncologist offered me "Calipso" radiation delivery, which is a Varian product, a competitor to CK. You and I discussed these two some time ago, if I recall correctly.  Calipso claims to be "4-D," with delivery acaccuracy about the same as CK.  Obviously, both are great products. I'm delighted it worked well for you, and many others, both in PCa, lung, and brain cancers, and any other cancers that thy are now commonly utilized against.

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    CK is NOT the same as IMRT/IGRT

    Scardino's comment was made in 2010 -- 5 years ago -- and IMO his opinion is severely outdated and does not take into account recent studies of CK's effectiveness.

    While CK and IMRT/IGRT both deliver radiation in hypofractionated doses (CK in fewer and higher doses than IMRT/IGRT) the greatest advtange of CK is the superior mapping technology used to reduce the potential for any collateral tissue damage caused by radiation delivery.  The radiation levels used in CK was based on the delivery of radiation via HDR BT -- high dose rate brachytherapy.  CK's techonolgy allows 3D mapping and radiation delivery to the sub-mm level which almost entirely reduces the possibility of such damage which in turn substantialy reduces the possibility of ED, incontience, etc, which are more likely with HDR BT and IMRT/IGRT because of their mapping/delivery limitations.

    Bottom line, even prior studies indicate that survival rates are not better w/CK than w/surgery or IMRT/IGRT, the quality of life benefits of using CK (substantially reduced likelihoold of ED, incontinence, etc. over other methods) is reason enough to choose CK over the other technologies.

     SBRT versus IMRT

     

    SBRT delivers radiation in hypofractionated doses, Cyberknife is one of the delivery systems for SBRT.. There are other delivery systems such as Novalis. So there are delivery systems from various companies that deliver SBRT. The results of these delivery systems are comparable. Basically these delivery systems must be very precise, to avoid damage. SBRT was first done  about 9 or 10 years ago by C. King while he was at Stanford. At that time of development,  he used the Cyberknife system.He now uses the Novalis system. As indicated in the above study by Katz that now shows 7 years of results, SBRT using Cyberknife  is very successful. There are other studies that also include results of other SBRT delivery systems that provide similar results. For the most part there are four or five sessions of delivery of hypofractioned radiation that are delivered. SBRT achieves comparable results to IMRT,in a shorter more convenient time,  since SBRT is hypofractioned, Eventhough there is more radiation given in each SBRT session,  there is also less total radiation  that are delivered to each patient when compared with total amount of radiation by IMRT type systems, which may very well  be a long term benefit. Of course more time is required to measure this.

    There are variations of IMRT with various names that delivers fractionated radiation over approximately eight weeks or so with approximately 40 sessions. As I understand, although  IMRT is very precise, it is not as precise as SBRT.

  • stoniphi
    stoniphi Member Posts: 54

     SBRT versus IMRT

     

    SBRT delivers radiation in hypofractionated doses, Cyberknife is one of the delivery systems for SBRT.. There are other delivery systems such as Novalis. So there are delivery systems from various companies that deliver SBRT. The results of these delivery systems are comparable. Basically these delivery systems must be very precise, to avoid damage. SBRT was first done  about 9 or 10 years ago by C. King while he was at Stanford. At that time of development,  he used the Cyberknife system.He now uses the Novalis system. As indicated in the above study by Katz that now shows 7 years of results, SBRT using Cyberknife  is very successful. There are other studies that also include results of other SBRT delivery systems that provide similar results. For the most part there are four or five sessions of delivery of hypofractioned radiation that are delivered. SBRT achieves comparable results to IMRT,in a shorter more convenient time,  since SBRT is hypofractioned, Eventhough there is more radiation given in each SBRT session,  there is also less total radiation  that are delivered to each patient when compared with total amount of radiation by IMRT type systems, which may very well  be a long term benefit. Of course more time is required to measure this.

    There are variations of IMRT with various names that delivers fractionated radiation over approximately eight weeks or so with approximately 40 sessions. As I understand, although  IMRT is very precise, it is not as precise as SBRT.

    The tool they used on me...

    ...was a machine head that revolved 359 degrees around a table upon which I lay. A cast of my lower body was attached to the table and the machine head revolved around me. They tatooed 3 blue dots on me (front and both sides at waist level) which were targeted by green lasers when I laid down in my body cast. I wore my own sweat pants and a T shirt. No metal allowed in pockets. There was a Cartesian grid in red lasers as well, projected from above onto the table. I was told there were 11 separate x - ray generators that acted in harmony with each other and a system of shades and reflectors with varying intensity. I took a close look at the shade setup inside the machine head. It was exactly what they said it was and appeared to be quite capable of targeting a 3 - D space smaller than a millimeter in diameter deep in your body up to maybe 10 centimeters wide. The computer system that ran things was very main - frame large and current, everything was top - notch equipment. They started out with a 3 dimensional image of my internal layout and I was adjusted to exactly the same position every day. I got to pee right before they set me up so I was comfortable. I laid down and shut my eyes, the table slid under the machine head, it fired up went around me once then shut down. They slid the table back out and I opened my eyes. Done for that 2 Gy session, usually there and back home in about an hour.

     

    I was aware the the number 1 side effect of the radiation treatment is ED. Numbers 2 and 3 are the urinary and bowel difficulties I have previously mentioned. Others are also possible, but less likely. You will wait 3 years to discover what all the side effects of the radation will be. Your relationship with those side effects will continue pretty much as long as you do after you receive the radiation treatment.

     

    It is said that a cut will heal relatively quickly while a burn takes a very long time by comparison. Surgery is the cut here and radiation is the burn.

    Being a relatively scheduled person, I just scheduled the daily treatments into my days for 2 months, enjoyed the short ride and meeting my fellow patients. Some were afraid, I was not, so I tasked myself to cheering everyone else up as best I could. That worked out well for all of us.

     

    There is so very much more to life than the size of your penis and/or having/not having ED. A year or 2 invested in oneself is not such a long time. If it is a cost, then there is a commensurate profit as well, our task is to find and appreciate that profit. While it is important to know of the possible hazards of any of these treatments, it is not beneficial to dwell on them too much.

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    stoniphi said:

    The tool they used on me...

    ...was a machine head that revolved 359 degrees around a table upon which I lay. A cast of my lower body was attached to the table and the machine head revolved around me. They tatooed 3 blue dots on me (front and both sides at waist level) which were targeted by green lasers when I laid down in my body cast. I wore my own sweat pants and a T shirt. No metal allowed in pockets. There was a Cartesian grid in red lasers as well, projected from above onto the table. I was told there were 11 separate x - ray generators that acted in harmony with each other and a system of shades and reflectors with varying intensity. I took a close look at the shade setup inside the machine head. It was exactly what they said it was and appeared to be quite capable of targeting a 3 - D space smaller than a millimeter in diameter deep in your body up to maybe 10 centimeters wide. The computer system that ran things was very main - frame large and current, everything was top - notch equipment. They started out with a 3 dimensional image of my internal layout and I was adjusted to exactly the same position every day. I got to pee right before they set me up so I was comfortable. I laid down and shut my eyes, the table slid under the machine head, it fired up went around me once then shut down. They slid the table back out and I opened my eyes. Done for that 2 Gy session, usually there and back home in about an hour.

     

    I was aware the the number 1 side effect of the radiation treatment is ED. Numbers 2 and 3 are the urinary and bowel difficulties I have previously mentioned. Others are also possible, but less likely. You will wait 3 years to discover what all the side effects of the radation will be. Your relationship with those side effects will continue pretty much as long as you do after you receive the radiation treatment.

     

    It is said that a cut will heal relatively quickly while a burn takes a very long time by comparison. Surgery is the cut here and radiation is the burn.

    Being a relatively scheduled person, I just scheduled the daily treatments into my days for 2 months, enjoyed the short ride and meeting my fellow patients. Some were afraid, I was not, so I tasked myself to cheering everyone else up as best I could. That worked out well for all of us.

     

    There is so very much more to life than the size of your penis and/or having/not having ED. A year or 2 invested in oneself is not such a long time. If it is a cost, then there is a commensurate profit as well, our task is to find and appreciate that profit. While it is important to know of the possible hazards of any of these treatments, it is not beneficial to dwell on them too much.

     

     

    Indeed

    Stoniphi,

    I have found that I agree with virtually everything you write, especially as regards attitude and keeping the "big picture."  I will be 60 next year, and cannot fathom the concern many men my age or older have with "penis length" and such. Who are we kidding ?  Me -- no one !

  • stoniphi
    stoniphi Member Posts: 54

    Indeed

    Stoniphi,

    I have found that I agree with virtually everything you write, especially as regards attitude and keeping the "big picture."  I will be 60 next year, and cannot fathom the concern many men my age or older have with "penis length" and such. Who are we kidding ?  Me -- no one !

    Thank you Max,

    It took me along time to decide to particpate in this forum. I thought I should try and bring some cheer and perspective to what can be a very frightening and sad expereince. Being alive is so much fun that the treatment side effects and such should not bring us down too much. Laughing

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    stoniphi said:

    Thank you Max,

    It took me along time to decide to particpate in this forum. I thought I should try and bring some cheer and perspective to what can be a very frightening and sad expereince. Being alive is so much fun that the treatment side effects and such should not bring us down too much. Laughing

    Minor point

    Stoniphi,

    I love the Uncle Fester pic  !

    My current pic is from the same era of vintage TV: Voyage to the Bottom of the Sea.  The show began in 1961, or around the time the nuclear Navy was beginning in real life.   I like it, having been a sub sailor for many years myself. 

    I am very glad you made the decision to join here,

    max

  • stoniphi
    stoniphi Member Posts: 54

    Minor point

    Stoniphi,

    I love the Uncle Fester pic  !

    My current pic is from the same era of vintage TV: Voyage to the Bottom of the Sea.  The show began in 1961, or around the time the nuclear Navy was beginning in real life.   I like it, having been a sub sailor for many years myself. 

    I am very glad you made the decision to join here,

    max

    Thanks Max

    I watched Voyage to the Bottom of the Sea every week while it was on back then too. Great show! Obviously I was a huge fan of the Adams Family as well. Always loved Uncle Fester. I do look somewhat like him as well......

     

    ...and some of my projects turn out a lot like his did. Embarassed

  • gumbyrun
    gumbyrun Member Posts: 58 Member
    5 years later...

    Uh-oh, one of your comments hit home with me and while I was going thorugh the thread I knew it had to be part of my input:

    "Of course, everyone feels differently about what treatment is best for him...."

    I had Davinci RP in Feb 2010 in Pittsburgh. My uro had done a couple thousand prior to mine. I still have (what I believe to be) excessive stress incontinence and came back to the forum after a few years absence to do some research on stress incontinence and slings.

    Anyways, back to your comment. Everyone makes their own decision based on their own research, gut feeling, family situation, etc. BUT - everyone OWNS there own decision and noone has the right , be it well meaning or otherwise, to criticize that decision. That being said, I have never seen a post on this forum that criticized someone's decision. This is a stake I have put in the sand, perhaps not needed, but it gives me a rallying point.

    That being said, I have had periods where I question my decision myself, wondering if...why...etc. I'm (ridiculously) optiistic about everything in my life; love my family, where I live, love my job, etc. Getting PCA at 51 was a life changing event for sure. But frustrations do occur. 

  • Old-timer
    Old-timer Member Posts: 196
    gumbyrun said:

    5 years later...

    Uh-oh, one of your comments hit home with me and while I was going thorugh the thread I knew it had to be part of my input:

    "Of course, everyone feels differently about what treatment is best for him...."

    I had Davinci RP in Feb 2010 in Pittsburgh. My uro had done a couple thousand prior to mine. I still have (what I believe to be) excessive stress incontinence and came back to the forum after a few years absence to do some research on stress incontinence and slings.

    Anyways, back to your comment. Everyone makes their own decision based on their own research, gut feeling, family situation, etc. BUT - everyone OWNS there own decision and noone has the right , be it well meaning or otherwise, to criticize that decision. That being said, I have never seen a post on this forum that criticized someone's decision. This is a stake I have put in the sand, perhaps not needed, but it gives me a rallying point.

    That being said, I have had periods where I question my decision myself, wondering if...why...etc. I'm (ridiculously) optiistic about everything in my life; love my family, where I live, love my job, etc. Getting PCA at 51 was a life changing event for sure. But frustrations do occur. 

    I like what you say, gumbyrun!

    Your post is uplifting, and correct, in my judgement. I especially like your last paragraph. It describes how I feel as I approach my 89th birthday and the 24th anniversary of learning that I have prostate cancer.

    Old-timer (Jerry)