Five years after IMRT

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Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    ob66 said:

    Doctor/Lawyer Kongo
    It is so interesting that GLM brought up the doctor/lawyer thing, for my wife and I have enjoyed Kongo's well informed and written posts for as long as we have visited this site, and both of us had conjured that you were a doctor, Kongo. I think it is the way you give your advice with such authority that gave us that impression along with you knowledge of some not too widely used terminology. Well, we were wrong. One question I have Kongo, is that you emphasize the non dairy, non red meat dietary approach and seem to espouse it very strongly. You do so to the point that any dairy or red meat usage I entertain is done with guilt. Yet, at the same time, you are somewhat casual about exercise. Since I am much the reverse, I wonder why someone who is so committed to diet, is not so much so to exercise??? Answer only if you care to, for it is really none of my business, but I would have guessed a stronger exercise program from someone so committed to diet. Wondering minds can be dangerous.

    Wondering Minds
    Ob,

    I had to smile when I read your post. Certainly no white jackets in my closet, as long as we don’t count the white dinner jacket I wear about once every two years. I don’t mean to sound heavy and don’t want anyone to misconstrue any advice so maybe I should “dumb it down” a bit. What do you think? And I am so sorry if I made you feel guilty about that nice cold glass of milk with your pancakes but I’m secretly delighted that you’re thinking about it.

    You DID make me feel guilty about the exercise and my seemingly casual approach to fitness. I really do think it is very, very important, particularly for those of us with cancer. I suppose that it’s one of my many failings that I can’t seem to muster the same energy toward a healthy exercise regimen as I do about other things. I know I should, I wish I could, and I have all the best intentions to do something in that area soon and it’s not that I am a complete slug. My most often used feeble excuse is that I do travel a lot and although some trips are longer than others it’s hard to get into a routine. But all my hotels have gyms so that excuse isn’t a very good one. I used to be a distance runner and logged 9-10 miles a day but a couple of moves, job changes, and schedule changes put it in the “too hard” category, but I know that’s just another excuse too. Thanks for making me face that aspect more realistically.

    I came into the diary thing in an interesting way. In the late 90s I had lunch with a woman in London who had just finished a book about her struggle with breast cancer and was meeting with my friend, a literary agent at his club just off Leicester Square in the West End. In any event we all had a long lunch and I heard first hand of how she beat breast cancer after a double mastectomy, radiation, other operations, chemotherapy and so forth. At the end a large, cancerous lump began growing in her neck and they basically gave her a month to live. She used her background to try to figure out why Chinese women don’t get breast cancer, at least at anywhere near the rates they do in the West, and identified dairy as the biggest difference in diets. She eliminated dairy and in six weeks her cancer had disappeared and hasn’t returned. My initial reaction was pretty much skeptical and “miracles happen” but she was so well credentialed, so well spoken, and so deeply passionate in an endearing way that I remembered her quite clearly ever since and kept a copy of her book. When I was diagnosed, I recalled our lunch and wondered how she was doing and discovered she is still going stronger than ever and has also published a book about prostate cancer and the correlation of dairy to both breast and prostate cancer which she termed “brother-sister” diseases. I got the prostate cancer book and re-read her breast cancer book and became a believer. I find it much easier to believe when something is affecting you personally. Her name is Professor Jane Plant and I commend her books to you without reservation. You can find her on Amazon. Basically, her premise is that while milk is great for baby cows, we don’t need milk at all after weaning and that the chemical makeup and enzymes in dairy and cattle products contain growth factors and hormones that are like candy to cancer.

    I also wondered about why the Chinese didn’t do dairy. Why was it that Western populations eat milk, cheese, yogurt, and so on it ever increasing quantities but yet the Chinese, other Asian cultures, and others in a few other parts of the world do not. I recalled a book I read several years ago by Jared Diamond called “Guns, Germs, and Steel” that basically examined the reasons why Western Civilizations ended up invading the New World and not the other way around. Part of the discussion concerns the domestication of animals and the effect that had on incumbent civilizations. Cattle were domesticated about 7,000 years ago in the Indus Valley and the cattle and dairy industry basically spread from there into Western and Northern Europe. There never were any cattle species in China that were suitable for domestication so they never developed cattle as a protein source from either meat or dairy. They domesticated ducks, pigs, geese, and some other fowl but no cattle. It wasn’t till much later in history, less than 1,000 years ago, that any cattle were introduced to China and by then the culture revolved around soy, supposed domesticated by a mythical Chinese Emperor named Shennong (I think it means Divine Farmer) about 5,000 years ago. Today, the Chinese consider dairy products “baby food.” Interestingly, as their diet has become more Westernized in the past generation, prostate cancer and breast cancer, particularly in urban areas, is increasing significantly.

    Anyway, that’s how I got onto the dairy thing. I’m not some mad cow wacko…and if I had never met Professor Jane Plant, I would still be putting extra cheese on just about everything and drinking a couple of glasses of milk a day. If you work on your dairy, I’ll work on my exercise.
  • Kongo
    Kongo Member Posts: 1,166 Member
    G.L.M_61 said:

    GLM / Kongo
    I have often wanted to be a private detective or an FBI profiler as I love to watch " criminal minds" and "without a trace" each night. :-). The part of your home that shows, your attire, and Palm tree leaves spells "success" is why I guessed San Diego.
    Well a quick update is that I am getting a repeat PSA next Monday, however in the meantime today I received, at my request, a detailed print out of my lab work that was done on the 13th of this month. My FREE PSA is "10" which by their standards and others, It appears to me that I have a 56% rate that my cancer has returned. Of course I am not happy about this, feel I was lied to in 2006, and would like to put my Oncologist head under that linier excellerator for 8 weeks............then just say when it is all over and he asked why the side effects, I will just say as he did, "I am sorry".
    However we are not the judge in this crazy world, as only God is and has a plan for everyone before they are even born. "He preparest a table before me in the presence of mine enimies". When I learned what this meant, I was quit taken by it, as many people do not.
    As for your remodeling job, it is just business as ladies shoes have a mark up of about 90%. LOL. If one has the tools and the ability to use them well with experience and is also a transplanted Yankee,:-), Remodeling was my "bag" and I loved it. We just loved smaller jobs and meeting people and have finsined projects from coast to coast that may last 100 years after we are gone. We offered 70 differnet services and for the last 12 years out of 42, my wife and I were a team, like a surgeon and a great surgical nurse.
    I know about the "sex" thing also. My wife is a georgeous Sicilian woman 10 years younger than me, and we have been married for 30 years, YIKES. Just remember what Dr. Phill McGraw says, " Sometimes it takes all night, to do what we used to do all night."

    Free PSA
    GLM,

    I don't know if free PSA following treatment has the same significance as before treatment. I guess it makes sense that it might, I just don't know for sure and can't recall reading anything that used free PSA after IMRT as a predictor for rising levels of prostate cancer. I would put that question at the top of my list of questions to ask your doctors. Maybe another member of the forum can shed some light on this. From what I have read free PSA is challenging to interpret as it has even more variability than regular PSA and can change levels in a single day for no apparent reason. Determining your PSA velocity and doubling time is, I believe, a more reliable indicator of future growth. Frequently, nothing is ever what it seems...for example, the picture you referred to was taken outside a Chinese restaurant at a resort in Cancun. So, don't come out of retirement for CSI just yet...LOL.

    You are awfully hard on your doctors. After all, you gave them "informed consent." At the time you were treated you had all the indications that you had a low risk cancer that was very treatable and you chose a state-of-the art treatment. Life is full of speed bumps no matter how carefully we try to navigate it. Since we can't rewind the clock but can only go forward, I think we should focus our energies on things that we can actually do something about and you seem to be pretty highly motivated in that direction.

    I'm looking forward to what you next PSA reading shows. I just had blood drawn today for my three month post treatment check up which is scheduled for a week from Friday. I think all of us with a PCa diagnosis begin to feel "PSA anxiety" every time one of those events occurs.
  • ob66
    ob66 Member Posts: 227 Member
    Kongo said:

    Wondering Minds
    Ob,

    I had to smile when I read your post. Certainly no white jackets in my closet, as long as we don’t count the white dinner jacket I wear about once every two years. I don’t mean to sound heavy and don’t want anyone to misconstrue any advice so maybe I should “dumb it down” a bit. What do you think? And I am so sorry if I made you feel guilty about that nice cold glass of milk with your pancakes but I’m secretly delighted that you’re thinking about it.

    You DID make me feel guilty about the exercise and my seemingly casual approach to fitness. I really do think it is very, very important, particularly for those of us with cancer. I suppose that it’s one of my many failings that I can’t seem to muster the same energy toward a healthy exercise regimen as I do about other things. I know I should, I wish I could, and I have all the best intentions to do something in that area soon and it’s not that I am a complete slug. My most often used feeble excuse is that I do travel a lot and although some trips are longer than others it’s hard to get into a routine. But all my hotels have gyms so that excuse isn’t a very good one. I used to be a distance runner and logged 9-10 miles a day but a couple of moves, job changes, and schedule changes put it in the “too hard” category, but I know that’s just another excuse too. Thanks for making me face that aspect more realistically.

    I came into the diary thing in an interesting way. In the late 90s I had lunch with a woman in London who had just finished a book about her struggle with breast cancer and was meeting with my friend, a literary agent at his club just off Leicester Square in the West End. In any event we all had a long lunch and I heard first hand of how she beat breast cancer after a double mastectomy, radiation, other operations, chemotherapy and so forth. At the end a large, cancerous lump began growing in her neck and they basically gave her a month to live. She used her background to try to figure out why Chinese women don’t get breast cancer, at least at anywhere near the rates they do in the West, and identified dairy as the biggest difference in diets. She eliminated dairy and in six weeks her cancer had disappeared and hasn’t returned. My initial reaction was pretty much skeptical and “miracles happen” but she was so well credentialed, so well spoken, and so deeply passionate in an endearing way that I remembered her quite clearly ever since and kept a copy of her book. When I was diagnosed, I recalled our lunch and wondered how she was doing and discovered she is still going stronger than ever and has also published a book about prostate cancer and the correlation of dairy to both breast and prostate cancer which she termed “brother-sister” diseases. I got the prostate cancer book and re-read her breast cancer book and became a believer. I find it much easier to believe when something is affecting you personally. Her name is Professor Jane Plant and I commend her books to you without reservation. You can find her on Amazon. Basically, her premise is that while milk is great for baby cows, we don’t need milk at all after weaning and that the chemical makeup and enzymes in dairy and cattle products contain growth factors and hormones that are like candy to cancer.

    I also wondered about why the Chinese didn’t do dairy. Why was it that Western populations eat milk, cheese, yogurt, and so on it ever increasing quantities but yet the Chinese, other Asian cultures, and others in a few other parts of the world do not. I recalled a book I read several years ago by Jared Diamond called “Guns, Germs, and Steel” that basically examined the reasons why Western Civilizations ended up invading the New World and not the other way around. Part of the discussion concerns the domestication of animals and the effect that had on incumbent civilizations. Cattle were domesticated about 7,000 years ago in the Indus Valley and the cattle and dairy industry basically spread from there into Western and Northern Europe. There never were any cattle species in China that were suitable for domestication so they never developed cattle as a protein source from either meat or dairy. They domesticated ducks, pigs, geese, and some other fowl but no cattle. It wasn’t till much later in history, less than 1,000 years ago, that any cattle were introduced to China and by then the culture revolved around soy, supposed domesticated by a mythical Chinese Emperor named Shennong (I think it means Divine Farmer) about 5,000 years ago. Today, the Chinese consider dairy products “baby food.” Interestingly, as their diet has become more Westernized in the past generation, prostate cancer and breast cancer, particularly in urban areas, is increasing significantly.

    Anyway, that’s how I got onto the dairy thing. I’m not some mad cow wacko…and if I had never met Professor Jane Plant, I would still be putting extra cheese on just about everything and drinking a couple of glasses of milk a day. If you work on your dairy, I’ll work on my exercise.

    To our mutual benefit
    I will work on my dairy/red meat....The challenge is not a betting/punitive one, but one that will help us both, hopefully....And please, please, do not dumb down any of your future posts, or I will not only miss your prose but have most of this board after my carcass.....So, cheers to Professor Jane Plant, and we shall check in on each other periodically...Bob
  • G.L.M_61
    G.L.M_61 Member Posts: 30
    Kongo said:

    Free PSA
    GLM,

    I don't know if free PSA following treatment has the same significance as before treatment. I guess it makes sense that it might, I just don't know for sure and can't recall reading anything that used free PSA after IMRT as a predictor for rising levels of prostate cancer. I would put that question at the top of my list of questions to ask your doctors. Maybe another member of the forum can shed some light on this. From what I have read free PSA is challenging to interpret as it has even more variability than regular PSA and can change levels in a single day for no apparent reason. Determining your PSA velocity and doubling time is, I believe, a more reliable indicator of future growth. Frequently, nothing is ever what it seems...for example, the picture you referred to was taken outside a Chinese restaurant at a resort in Cancun. So, don't come out of retirement for CSI just yet...LOL.

    You are awfully hard on your doctors. After all, you gave them "informed consent." At the time you were treated you had all the indications that you had a low risk cancer that was very treatable and you chose a state-of-the art treatment. Life is full of speed bumps no matter how carefully we try to navigate it. Since we can't rewind the clock but can only go forward, I think we should focus our energies on things that we can actually do something about and you seem to be pretty highly motivated in that direction.

    I'm looking forward to what you next PSA reading shows. I just had blood drawn today for my three month post treatment check up which is scheduled for a week from Friday. I think all of us with a PCa diagnosis begin to feel "PSA anxiety" every time one of those events occurs.

    FREE PSA
    I had a long reply composed and ready to send, then all of a sudden, "POOF", it was gone and lost. I will re answer ASAP and I will be more than happy to share any results with you, and also ask your opinion before taking anymore tests. Visit www.Allexperts.com some day where you can talk to a real professional about anything, and learn about them before hand. I used to be a member.
    There are no rewinds in life for sure and our goal is to learn at leats one thing a day. If you wish to learn more about us, or a little, go to www.google.com and type in 972-843-2649. See what comes up. Have a good day.
  • G.L.M_61
    G.L.M_61 Member Posts: 30
    Kongo said:

    Free PSA
    GLM,

    I don't know if free PSA following treatment has the same significance as before treatment. I guess it makes sense that it might, I just don't know for sure and can't recall reading anything that used free PSA after IMRT as a predictor for rising levels of prostate cancer. I would put that question at the top of my list of questions to ask your doctors. Maybe another member of the forum can shed some light on this. From what I have read free PSA is challenging to interpret as it has even more variability than regular PSA and can change levels in a single day for no apparent reason. Determining your PSA velocity and doubling time is, I believe, a more reliable indicator of future growth. Frequently, nothing is ever what it seems...for example, the picture you referred to was taken outside a Chinese restaurant at a resort in Cancun. So, don't come out of retirement for CSI just yet...LOL.

    You are awfully hard on your doctors. After all, you gave them "informed consent." At the time you were treated you had all the indications that you had a low risk cancer that was very treatable and you chose a state-of-the art treatment. Life is full of speed bumps no matter how carefully we try to navigate it. Since we can't rewind the clock but can only go forward, I think we should focus our energies on things that we can actually do something about and you seem to be pretty highly motivated in that direction.

    I'm looking forward to what you next PSA reading shows. I just had blood drawn today for my three month post treatment check up which is scheduled for a week from Friday. I think all of us with a PCa diagnosis begin to feel "PSA anxiety" every time one of those events occurs.

    FREE PSA / Kongo
    Yes , I would love to keep in touch , especially since you are just recently finished with your treatment. What type of trestment did you choose? if I may ask. Like a said, I am hardest on myself and there is no rewind, so forward we go to the next chapter. You say I am hard on my doctors? This is propbably because I listened to all of them, did what they said when they wanted me to, and found many inconsistencys alsong the way. I was not in two business for 42 years because I was a thief or a liar. I will have my new bloodwork back the middle of next week. I believe when I finsined mt IMRT, 40 visits, I was told that my PSA could take about 6 months to get to it's lowest point. Good luck with your tests and I would love to keep the ball rolling. BTW: You must have had your chopsticks in your pocket, however I did see some crumbs of fortune cookies on you suit, LOL. Of couse it was at a chinese resturant and Kongo is the name of your Dog as you shipped there many times when you were in the service. :-) Chat soon and take care.
  • Kongo
    Kongo Member Posts: 1,166 Member
    G.L.M_61 said:

    FREE PSA / Kongo
    Yes , I would love to keep in touch , especially since you are just recently finished with your treatment. What type of trestment did you choose? if I may ask. Like a said, I am hardest on myself and there is no rewind, so forward we go to the next chapter. You say I am hard on my doctors? This is propbably because I listened to all of them, did what they said when they wanted me to, and found many inconsistencys alsong the way. I was not in two business for 42 years because I was a thief or a liar. I will have my new bloodwork back the middle of next week. I believe when I finsined mt IMRT, 40 visits, I was told that my PSA could take about 6 months to get to it's lowest point. Good luck with your tests and I would love to keep the ball rolling. BTW: You must have had your chopsticks in your pocket, however I did see some crumbs of fortune cookies on you suit, LOL. Of couse it was at a chinese resturant and Kongo is the name of your Dog as you shipped there many times when you were in the service. :-) Chat soon and take care.

    Treatment
    GLM,

    I chose to have SBRT radiation with CyberKnife. It is similar to IMRT but somewhat updated from what was available when you were treated. My CyberKnife treatment was five sessions, each about 45 minutes long with a rest day in between. The CyberKnife systems tracks prostate movement in real time and adjusts for the movement so that all of the radiation is concentrated within the prostate, minimizing the potential for urinary or bowel toxcicity. I was treated in June and have my 3-month follow-up next week. So far there have been no side effects at all. A couple of others who post here have also recently chose this treatment and they all seem to be doing well, at least at this early stage following radiation.
  • G.L.M_61
    G.L.M_61 Member Posts: 30
    Kongo said:

    Treatment
    GLM,

    I chose to have SBRT radiation with CyberKnife. It is similar to IMRT but somewhat updated from what was available when you were treated. My CyberKnife treatment was five sessions, each about 45 minutes long with a rest day in between. The CyberKnife systems tracks prostate movement in real time and adjusts for the movement so that all of the radiation is concentrated within the prostate, minimizing the potential for urinary or bowel toxcicity. I was treated in June and have my 3-month follow-up next week. So far there have been no side effects at all. A couple of others who post here have also recently chose this treatment and they all seem to be doing well, at least at this early stage following radiation.

    Treatment / Kongo
    I have never heard of that treatment. I had the IMRT with 3 tatoos on my side and front. I was in a dark room and a sonogram was done before each treatment as all organs miove in the body dialy. After they located the exact position of my prostate, the table moved,with me on it staying still, and lined up my 3 dot like tattoos with the lazer beams all around the room and ceiling. The the treatment started hitting me with various strenghts of radiation and controled as best as possible to the carcer area. The beam started at my side, then about 2:00 as if you were looking at a clock, then 12:00 noon, then 10:00 AM, then finally at my left side. A total of 5 angles and it took about 4 minutes or less each time. I went 5 days a week for 8 weeks. I never felt anything except a little tired at the end of the last 3 weeks as they said I would. I also had to drink a full bottle of water before treatment and hold it for about an hour so my bladder would expand and they could see better. I think that was the hardest part. Twice the linier accelorator broke down right in the middle od a treatment. I had to drive 60 miles round trip, 5 days out of the week and rest on the weekend. I figured it out once and it was like driving from N.J. to your house in L.A. I get my PSA taken , etc. this coming monday and maybe 1 or 3 days for the results. I was happy as hell when this ordeal was over and they told me I was cancer free. After hearing that I was fine until this new BS poped up. Needless to say I am very shocked, however it is what it is and we must do what we have to, as the alternative is not my choice right now. I have too much left in me and things to do before I leave this earth. Only God knows when this will happen, and NO doctor has any right to tell another patient anything such as, you have 2 months to live. Good luck to you and we can keep each other posted if you like.
  • Kongo
    Kongo Member Posts: 1,166 Member
    G.L.M_61 said:

    Treatment / Kongo
    I have never heard of that treatment. I had the IMRT with 3 tatoos on my side and front. I was in a dark room and a sonogram was done before each treatment as all organs miove in the body dialy. After they located the exact position of my prostate, the table moved,with me on it staying still, and lined up my 3 dot like tattoos with the lazer beams all around the room and ceiling. The the treatment started hitting me with various strenghts of radiation and controled as best as possible to the carcer area. The beam started at my side, then about 2:00 as if you were looking at a clock, then 12:00 noon, then 10:00 AM, then finally at my left side. A total of 5 angles and it took about 4 minutes or less each time. I went 5 days a week for 8 weeks. I never felt anything except a little tired at the end of the last 3 weeks as they said I would. I also had to drink a full bottle of water before treatment and hold it for about an hour so my bladder would expand and they could see better. I think that was the hardest part. Twice the linier accelorator broke down right in the middle od a treatment. I had to drive 60 miles round trip, 5 days out of the week and rest on the weekend. I figured it out once and it was like driving from N.J. to your house in L.A. I get my PSA taken , etc. this coming monday and maybe 1 or 3 days for the results. I was happy as hell when this ordeal was over and they told me I was cancer free. After hearing that I was fine until this new BS poped up. Needless to say I am very shocked, however it is what it is and we must do what we have to, as the alternative is not my choice right now. I have too much left in me and things to do before I leave this earth. Only God knows when this will happen, and NO doctor has any right to tell another patient anything such as, you have 2 months to live. Good luck to you and we can keep each other posted if you like.

    Treatments
    GLM,

    CyberKnife was just emerging when you first sought treatment so I'm not surprised you haven't heard of it. IMRT was then and continues to be a first rate method to treat prostate cancer. Unfortunately in your case, you happened to be one of the relatively few where PCa was likely growing someplace other than the prostate and was undetectable. I would be very surprised if the PSA rise you are reporting is coming from a cancer within the prostate. It's certainly possible, of course, but most radiation failures (if that is indeed what you are experiencing) occur in sites distant from the prostate.

    In a similar vein, men with RP and negative margins and who are told everything was contained in the prostate and had low Gleason scores even after removal, find themselves facing a rising PSA.

    This disease never truly contains itself to the prostate. I think that when it first begins to form cancerous cells leak into the bloodstream, I also think biopsy needles might be a factor in spreading PCa as well as surgery itself when the prostate is cut out across the base.

    If you remember any of your high school physics, there is this principle called the Heisenberg Uncertainty Principle. It holds that for particles at the atomic level, the very act of measuring them changes their behavior. I think something like this occurs when biopsy needles go in and of out of the prostate and surgeons cut on it. While many experts say that biopsies and surgeries don't spread cancer there are several papers that suggest just such a thing occurs.

    In any event, prostate cancer spreads. Doctors should be more forthcoming in explaining the dynamics of it to new patients but most patients just want to know whether or not they've been cured and want things in black and white rather than shades of gray.
  • G.L.M_61
    G.L.M_61 Member Posts: 30
    Kongo said:

    Treatments
    GLM,

    CyberKnife was just emerging when you first sought treatment so I'm not surprised you haven't heard of it. IMRT was then and continues to be a first rate method to treat prostate cancer. Unfortunately in your case, you happened to be one of the relatively few where PCa was likely growing someplace other than the prostate and was undetectable. I would be very surprised if the PSA rise you are reporting is coming from a cancer within the prostate. It's certainly possible, of course, but most radiation failures (if that is indeed what you are experiencing) occur in sites distant from the prostate.

    In a similar vein, men with RP and negative margins and who are told everything was contained in the prostate and had low Gleason scores even after removal, find themselves facing a rising PSA.

    This disease never truly contains itself to the prostate. I think that when it first begins to form cancerous cells leak into the bloodstream, I also think biopsy needles might be a factor in spreading PCa as well as surgery itself when the prostate is cut out across the base.

    If you remember any of your high school physics, there is this principle called the Heisenberg Uncertainty Principle. It holds that for particles at the atomic level, the very act of measuring them changes their behavior. I think something like this occurs when biopsy needles go in and of out of the prostate and surgeons cut on it. While many experts say that biopsies and surgeries don't spread cancer there are several papers that suggest just such a thing occurs.

    In any event, prostate cancer spreads. Doctors should be more forthcoming in explaining the dynamics of it to new patients but most patients just want to know whether or not they've been cured and want things in black and white rather than shades of gray.

    Treatments / Kongo
    I thought that "proton" radiation was the best, however super expensive and at that time, I think there were only two of them in the country?
    Moving on, I did have a prostate biopsey and 1 out of 12 samples detected Pca. So the urologist said after sending the samples from Garland , TX to his own lab in San Antonio,and I waited two weeks for the results.I did meet another man with the same scenario, he did not want to talk about it at all, actually his wife told me to never bring up the subjuect to him, so I did not.
    Are you telling me that my cancer could have spread to other parts of my body even if it was not in my prostate anymore? and that is is still refered to as Pca. where ever it is? Is this is why they want me to have that bone scan, correct?
  • Kongo
    Kongo Member Posts: 1,166 Member
    G.L.M_61 said:

    Treatments / Kongo
    I thought that "proton" radiation was the best, however super expensive and at that time, I think there were only two of them in the country?
    Moving on, I did have a prostate biopsey and 1 out of 12 samples detected Pca. So the urologist said after sending the samples from Garland , TX to his own lab in San Antonio,and I waited two weeks for the results.I did meet another man with the same scenario, he did not want to talk about it at all, actually his wife told me to never bring up the subjuect to him, so I did not.
    Are you telling me that my cancer could have spread to other parts of my body even if it was not in my prostate anymore? and that is is still refered to as Pca. where ever it is? Is this is why they want me to have that bone scan, correct?

    Exactly
    GLM, that is exactly what I am telling you. When prostate cancer leaves the prostate and goes to the seminal vesicules, lymph nodes, bone or liver or lung, for example, it is still prostate cancer. When it leaves the prostate to another organ it also tends to grow faster and many prostate cancer experts believe that there are inherent built-it protectors that sort of keep it under control while it is within the prostate but that once its loose, there isn't anything to slow it down. In the lymph nodes, PCa grows about twice as fast as it does inside the prostate. In the bones it grows about four times as fast.

    The body generally does a pretty good job in fighting cancer with its own immune system but eventually, a few of those cells that leak out of the prostate will eventually find a home someplace else and start to grow. One of the most likely places is the tissue immediately surrounding the prostate area and the seminical vesicules and lymph nodes.

    Usually, as I understand the reports I have read, that radiation does a pretty good job in killing the PCa within the prostate, and IMRT is as good or better at that than most. Although for sure there could be some residual cancer there, I would think there is a pretty good chance it is somewhere else. Most likely it is at a microscopic level at this stage and is going to be very difficult to detect which is why follow-on testing we talked about in earlier posts are important. The bone scan is only one of many of the tests that can be done and given the numbers you have described, I would be surprised if they were able to see anything there but it can't really hurt you and at least they can say that there are no measurable lesions there that could be detected. There are other tests we discussed earlier that might be more relevant in your case.

    One thing you metioned in your last post sent an alarm bell off if I read it correctly. Are you saying that your doctor sent your biopsy sample to a laboratory that he owned in another city for analysis? Did anyone ever do a second opinion on the biopsy? I don't know if sending the biopy to a lab you own then using that to recommend treatment based on that result is illegal or not but it certainly seems borderline to me. Just my opinion.
  • Kongo
    Kongo Member Posts: 1,166 Member
    G.L.M_61 said:

    Treatments / Kongo
    I thought that "proton" radiation was the best, however super expensive and at that time, I think there were only two of them in the country?
    Moving on, I did have a prostate biopsey and 1 out of 12 samples detected Pca. So the urologist said after sending the samples from Garland , TX to his own lab in San Antonio,and I waited two weeks for the results.I did meet another man with the same scenario, he did not want to talk about it at all, actually his wife told me to never bring up the subjuect to him, so I did not.
    Are you telling me that my cancer could have spread to other parts of my body even if it was not in my prostate anymore? and that is is still refered to as Pca. where ever it is? Is this is why they want me to have that bone scan, correct?

    Email
    I sent you an email with my phone number.
  • G.L.M_61
    G.L.M_61 Member Posts: 30
    Kongo said:

    Exactly
    GLM, that is exactly what I am telling you. When prostate cancer leaves the prostate and goes to the seminal vesicules, lymph nodes, bone or liver or lung, for example, it is still prostate cancer. When it leaves the prostate to another organ it also tends to grow faster and many prostate cancer experts believe that there are inherent built-it protectors that sort of keep it under control while it is within the prostate but that once its loose, there isn't anything to slow it down. In the lymph nodes, PCa grows about twice as fast as it does inside the prostate. In the bones it grows about four times as fast.

    The body generally does a pretty good job in fighting cancer with its own immune system but eventually, a few of those cells that leak out of the prostate will eventually find a home someplace else and start to grow. One of the most likely places is the tissue immediately surrounding the prostate area and the seminical vesicules and lymph nodes.

    Usually, as I understand the reports I have read, that radiation does a pretty good job in killing the PCa within the prostate, and IMRT is as good or better at that than most. Although for sure there could be some residual cancer there, I would think there is a pretty good chance it is somewhere else. Most likely it is at a microscopic level at this stage and is going to be very difficult to detect which is why follow-on testing we talked about in earlier posts are important. The bone scan is only one of many of the tests that can be done and given the numbers you have described, I would be surprised if they were able to see anything there but it can't really hurt you and at least they can say that there are no measurable lesions there that could be detected. There are other tests we discussed earlier that might be more relevant in your case.

    One thing you metioned in your last post sent an alarm bell off if I read it correctly. Are you saying that your doctor sent your biopsy sample to a laboratory that he owned in another city for analysis? Did anyone ever do a second opinion on the biopsy? I don't know if sending the biopy to a lab you own then using that to recommend treatment based on that result is illegal or not but it certainly seems borderline to me. Just my opinion.

    Exactly / Kongo
    The last parragraph you read in my last post was exactly what I meant. After the biopsey that urologists that was recomended by by family physician at the time, they all run in cirlcles, the money circle. The drawings after my biosey looked like my 5 year old Grandson did it. I still have them. I asked several years ago to have my biopsey sent to me, however they would only send it to another Oncologist. I did not have the money to do so, and even if I did, who knows who's biopsey they would have sent me. Just like the new version of "The Fugitive" where his partner sent the same samples from the same liver in an attempt to give the public the new wonder "B S" drug, "provasic". REMEMBER? This was when I was still in business and my wife and I were working for this couple who he had the same urologist, and they also quetioned why he sent the lab work to San Antonio and made that poor couple wait over two weeks for the results.This Urologist office seemed more like a kennel if you ask me, and it was located right next to one of the best hospitals around. I attempted many times to cross refernce and catch that guy doing something wrong, hoping to find another complaint or something like that. Well, what would it matter any way as there is no rewind as the damage is done, right or wrong. The chances of that urologist finding cancer in my prostate at the time with only 12 biopsies was like finding a needle in a haystack. That needle he found most likely paid off his house, or the patients before me. I know, I bought him a beach house in Cancoon, next to that restuant you ate in. :-)
  • G.L.M_61
    G.L.M_61 Member Posts: 30
    Kongo said:

    Email
    I sent you an email with my phone number.

    E-mail?
    I must have gained your trust and you have done some reaseach maybe with the clue I gave you to find me. I did not read nor find an e-mail from you today for some reason. I might have deleted it by mistake or it went into my spam folder. Please resend it and if you wish, in the subject line, write KONGO, this was I will recognize it. I also put a photo in my profile of me and my wife however as I told you before, this is the first "discussion board" I have ever been a member of so I am not a PC wiz, for that is my son's forte. I eagerly await a new personal contact from you. Maybe I have missed something. I would send you mine however I do not know if this post is private or not. Thank you.
  • Kongo
    Kongo Member Posts: 1,166 Member
    G.L.M_61 said:

    E-mail?
    I must have gained your trust and you have done some reaseach maybe with the clue I gave you to find me. I did not read nor find an e-mail from you today for some reason. I might have deleted it by mistake or it went into my spam folder. Please resend it and if you wish, in the subject line, write KONGO, this was I will recognize it. I also put a photo in my profile of me and my wife however as I told you before, this is the first "discussion board" I have ever been a member of so I am not a PC wiz, for that is my son's forte. I eagerly await a new personal contact from you. Maybe I have missed something. I would send you mine however I do not know if this post is private or not. Thank you.

    EMAIL
    GLM

    The email is through this site...the American Cancer Site. If you look on the left hand side of this browser page you will see a link that says "CSN Email". Check that. Will send you another one just in case.
  • G.L.M_61
    G.L.M_61 Member Posts: 30
    Kongo said:

    EMAIL
    GLM

    The email is through this site...the American Cancer Site. If you look on the left hand side of this browser page you will see a link that says "CSN Email". Check that. Will send you another one just in case.

    Just checking
    Hi again as I have not been on this site for a while. Just to see how you all are doing with your post treatment. I am still off the dairy and driving my wife crazy, LOL. It is all good and my doctor told me as long as I feel OK due to the significant drop in my PSA in just two weeks, I do not have to go back until December for a recheck of my level. Hope you and yours are doing fine and next time, travel to the Dallas Metroplex. N.Y.C. ? Get a rope. LOL. C-YA