Guest guest Posted April 14, 2012 Report Share Posted April 14, 2012 ***If your one of my friends via facebook please don't post anything there. I haven't gone public with family or friends about my recent situation*** I'm in a little bit of quandary. I'm trying to stay positive but it's hard, especially worrisome I won't be around to raise my 20 month old son. Per both doctors I'm sort of out of curative options. My doctor at National Institute of Health who performed the surgery and my local urologist both mentioned ADT either starting now or waiting another 3 months. The thought was in 3 months see if it rises again and if so start ADT and get all new scans to start a new baseline. They both feel its my PSA is very low but the cancer is somewhere but to microscopic to find. I was diagnosed at the age of 42 with prostate cancer in 2009. During a routine physical by my family physician discovered my PSA was higher than normal (6.8). I have never had any symptoms of PCa. I've always considered myself a healthy athletic person. Running several marathons and working out at gym on a regular basis, etc…. To this day I still feel very healthy and actually ran 6 miles the day before surgery and during radiation ran every day. Even now 6 months post surgery and again back into my routine of running, working out and just daily life stuff. My point is I never felt any symptoms before and after my treatments. I feel healthy and physically fit to this day. My biggest issue I'm experiencing is stress and I'm worrisome. Again having a 20 month old son, I just want to find a curative solution or at the very least a plan to manage this disease so I can be around for my son. If anyone has any experience or in a similar situation i'm looking for ideas. Here is brief chronological summary of my history of prostate cancer: • February 2009-had my 1st biopsy by my local Urologist. Pathology came back positive 4 out of 12 cores positive. Gleason score 7 (4+3), PSA 8.6 • Summer 2009-Received Proton Beam Radiation at Loma Medical University. 45 sessions of all protons, no photons. • 2 years post proton treatment my lowest nadir was 3.2. My psa has jumped around from the 4's to as high as 5.4 since my proton treatment. The concern with my psa was the fluctuation and rising PSA. My local urologist believes I had reoccurrence of prostate cancer • Also prior to protons and post treatment I have had multiple scans to see if cancer could be found (i.e., prostascint, CAT, MRI, Dexa, etc…) all have came back negative for signs of metastatic cancer. Note: My local urologist and I concern was my PSA was fluctuating and rising which means reoccurrence. Even though all my scans have come back negative for any signs of metastatic cancer my urologist has explained it could be microscopic which the scans are not able to detect. My hope and prayers during my journey with PCa was and still is to find a curative solution. • Spring of 2011-I had another biopsy performed by my local urologist which all 12 cores came back negative. (The thought was to see if we could find localized and if so remove my prostate in hope of a curative solution) • Summer of 2011-I flew back to consult with my Loma doctor. He suggested to have a special type of MRI called endorectal MRI with the hopes of having could a better image of prostate/pelvic region and if found to have my prostate removed. • August 2011- my local urologist sent me to to the National Institute of Health to have this type of MRI and a guided biopsy per the images they got back from my endorectal MRI. NIH found suspicious areas and performed a guided biopsy. • August 2011--NIH pathology came back with 8 out of 16 cores positive with a new gleason score of 8 and 9 and one involvement in my seminal vesicles. • October 6, 2011-After speaking with my NIH doctor (Dr. Pinto) we decided to have a prostatectomy at NIH in hopes of maybe cancer was still localized. Dr. Pinto and his team went wide in surgical terms removing my (robotically) prostate, 34 lymph nodes and my seminal vesicles. • NIH pathology results came back approx 2 weeks later after my surgery showing a gleason score of 10 and out of the 34 lymph nodes 2 came back positive. • Post prostatectomy PSA- at 6 weeks was .07, at 3 months .07 again, April of 2012 was my 6 month psa the results came back at .12 which is a rise of .05. (All psa's have been performed at the same laboratory) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2012 Report Share Posted April 14, 2012 .... > I'm in a little bit of quandary. ... .... Don, I'm not a doctor and not qualified to give medical advice. All I can do is give you some layman's opinions. The first thing I recommend is to find a good medical oncologist who specializes in prostate cancer. If you live in the land area, which I presume that you do if you were treated at NIH, you could inquire at NIH in Bethesda, at s Hopkins or the University of land Hospitals in Baltimore (Hopkins is especially renowned for prostate cancer), or possibly at town University Hospital. A very famous, and very expensive private prostate cancer specialist not far away is Dr. " Snuffy " Myers. At any of those places you are likely to find someone with significant experience with prostate cancer who is up to date with the latest research - which has been advancing very quickly. From everything I know about the disease, the advice that Chuck gave is likely to be the adivce you'd get from a specialist - to go on androgen deprivation therapy relatively soon. A Gleason 10 cancer is very aggressive. Getting cancer at such a relatively young age also indicates aggressiveness. I would inquire about very aggressive treatment, i.e., ADT3, treatment with a drug such as Lupron to suppress testosterone production, a drug like bicalutamide to block the uptake of testosterone in the prostate cells, and a drug like Dutasteride to block conversion of testosterone to the more potent prostate cancer stimulator dihydrotestosterone. Recently, some patients have even tried a combination of chemotherapy and ADT. Some seem to have gotten a pretty complete remission - though it's too early to tell how long it will last. There are some trials underway on this approach. ADT drugs will change your life. They'll reduce your athletic ability, take away some of your stamina, and destroy your libido. On the other hand they won't destroy your ability to work, to care for and about your family, or to find joy in life. And most importantly, they may also suppress your cancer - possibly for many, many years. A number of new drugs have recently been approved for prostate cancer that can take up where the ADT3 drugs leave off and continue to extend life after the ADT3 drugs have stopped working. There are also a number of additional new drugs in the pipeline. You've been dealt a tough hand, but your low PSA indicates that your cancer is still very small. I think there is a good chance that you can suppress it and keep it from growing. I think there is a good chance that you'll still be here 10 years from, and still have a very small cancer with no symptoms. At that time I expect there will be new options that will help you get another ten years and, who knows, maybe ten or more years after that. > I'm trying to stay positive but it's hard, especially worrisome > I won't be around to raise my 20 month old son. I understand. I wasn't as young as you when I was diagnosed. My children were already grown. And yet I still had many, many sleepless nights and, I must admit, I was depresesed and found myself crying sometimes. I think I know how you must feel. Here's what I recommend: 1. Get the best medical advice that you can. I see that you've been doing that and it is obvious that you have the intelligence and resourcefulness to keep doing that. 2. Ask about aggressive treatment. I _think_ from my layman's point of view, that the most aggressive treatment is desirable. Inquire about clinical trials at NIH and visit these pages to see what is available: http://cancer.gov/clinicaltrials/search/results?protocolsearchid=6158092 & vers=1 3. Stay committed to athletics. I don't think you'll be able to run any marathons on ADT, but you will be able to do something. Don't let the drugs turn you into a couch potato. If you can't run 25 miles, maybe you can still jog 5. Maybe you can still ride a bike, play tennis, hike, or do something. Don't judge yourself a failure if you have to cut back from where you are now. If you can continue to engage in athletics, even at a reduced level, then you're a winner! 4. I suggest that you tell your friends and family everything. I found that it made everything easier. Tell them what's happening but also put them at their ease. Many of them will not know how to talk to you about it and so will avoid the subject for fear of upsetting you, and you may avoid the subject for fear of upsetting them or having them pity you. But open communication, if you can manage it, may make your life easier. It made my life easier. 5. Focus on your family. Your wife is going through a difficult trial along with you. Help her out. Many patients withdraw into their own world of fear and depression, avoiding their wives and the one relationship that can help them more than any other. ADT will destroy your desire for sex but keep doing it anyway as an expression of love for your wife - and you will find that both of you will get a great deal out of it - even if all you can do is oral and manual sex. Continue to offer physical warmth and love to your wife. 6. Stay committed to your career. I like my work and think it is valuable to others (I'm a computer programmer at the National Cancer Institute.) Initially I found it hard to focus on work. I was wrapped up in my own problems. But I found that by forcing myself to work I took my mind away from negative feelings and felt better about myself. I wish the very best of luck to you and your family. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2012 Report Share Posted April 15, 2012 Alan, Thank you very much for the information and your words of encouragement. I live just outside of Seattle, WA. However, I made contact with Dr. Snuffy Myers office and hope to see him soon but I expect that to be unlikely since his waiting list is long. I have his recent book and been watching his videos. I wasn't aware of the difference between ADT3 (triple blockade) vs a single shot of lupron. My local urologist only mentioned lupron. I will visit the links provided by Chuck so I have a better understanding. My psa is at .12 but do you think waiting an additional 3 months just to see how my psa behaves will be detrimental? I'm also thinking of having my local urologist order a complete set of scans (CAT, MRI) to see if anything can be seen. I had scans done at NIH and locally before surgery and all came back negative. I know that may be a difficult question to answer. From your experience do most men experience these side effects from ADT during the entire duration or are these just initial side effects until the body gets use to the drugs? don > > ... > > I'm in a little bit of quandary. ... > ... > > Don, > > I'm not a doctor and not qualified to give medical advice. All I > can do is give you some layman's opinions. > > The first thing I recommend is to find a good medical oncologist > who specializes in prostate cancer. If you live in the land > area, which I presume that you do if you were treated at NIH, you > could inquire at NIH in Bethesda, at s Hopkins or the > University of land Hospitals in Baltimore (Hopkins is > especially renowned for prostate cancer), or possibly at > town University Hospital. A very famous, and very > expensive private prostate cancer specialist not far away is Dr. > " Snuffy " Myers. At any of those places you are likely to > find someone with significant experience with prostate cancer who > is up to date with the latest research - which has been advancing > very quickly. > > From everything I know about the disease, the advice that Chuck > gave is likely to be the adivce you'd get from a specialist - to > go on androgen deprivation therapy relatively soon. A Gleason 10 > cancer is very aggressive. Getting cancer at such a relatively > young age also indicates aggressiveness. I would inquire about > very aggressive treatment, i.e., ADT3, treatment with a drug such > as Lupron to suppress testosterone production, a drug like > bicalutamide to block the uptake of testosterone in the prostate > cells, and a drug like Dutasteride to block conversion of > testosterone to the more potent prostate cancer stimulator > dihydrotestosterone. Recently, some patients have even tried a > combination of chemotherapy and ADT. Some seem to have gotten a > pretty complete remission - though it's too early to tell how > long it will last. There are some trials underway on this > approach. > > ADT drugs will change your life. They'll reduce your athletic > ability, take away some of your stamina, and destroy your libido. > On the other hand they won't destroy your ability to work, to > care for and about your family, or to find joy in life. And most > importantly, they may also suppress your cancer - possibly for > many, many years. > > A number of new drugs have recently been approved for prostate > cancer that can take up where the ADT3 drugs leave off and > continue to extend life after the ADT3 drugs have stopped > working. There are also a number of additional new drugs in the > pipeline. > > You've been dealt a tough hand, but your low PSA indicates that > your cancer is still very small. I think there is a good chance > that you can suppress it and keep it from growing. I think there > is a good chance that you'll still be here 10 years from, and > still have a very small cancer with no symptoms. At that time I > expect there will be new options that will help you get another > ten years and, who knows, maybe ten or more years after that. > > > I'm trying to stay positive but it's hard, especially worrisome > > I won't be around to raise my 20 month old son. > > I understand. I wasn't as young as you when I was diagnosed. My > children were already grown. And yet I still had many, many > sleepless nights and, I must admit, I was depresesed and found > myself crying sometimes. I think I know how you must feel. > > Here's what I recommend: > > 1. Get the best medical advice that you can. I see that you've > been doing that and it is obvious that you have the intelligence > and resourcefulness to keep doing that. > > 2. Ask about aggressive treatment. I _think_ from my layman's > point of view, that the most aggressive treatment is desirable. > Inquire about clinical trials at NIH and visit these pages to see > what is available: > > http://cancer.gov/clinicaltrials/search/results?protocolsearchid=6158092 & vers=1 > > 3. Stay committed to athletics. I don't think you'll be able to > run any marathons on ADT, but you will be able to do something. > Don't let the drugs turn you into a couch potato. If you can't > run 25 miles, maybe you can still jog 5. Maybe you can still > ride a bike, play tennis, hike, or do something. Don't judge > yourself a failure if you have to cut back from where you are > now. If you can continue to engage in athletics, even at a > reduced level, then you're a winner! > > 4. I suggest that you tell your friends and family everything. I > found that it made everything easier. Tell them what's happening > but also put them at their ease. Many of them will not know how > to talk to you about it and so will avoid the subject for fear of > upsetting you, and you may avoid the subject for fear of > upsetting them or having them pity you. But open communication, > if you can manage it, may make your life easier. It made my life > > easier. > > 5. Focus on your family. Your wife is going through a difficult > trial along with you. Help her out. Many patients withdraw into > their own world of fear and depression, avoiding their wives and > the one relationship that can help them more than any other. ADT > will destroy your desire for sex but keep doing it anyway as an > expression of love for your wife - and you will find that both of > you will get a great deal out of it - even if all you can do is > oral and manual sex. Continue to offer physical warmth and love > to your wife. > > 6. Stay committed to your career. I like my work and think it is > valuable to others (I'm a computer programmer at the National > Cancer Institute.) Initially I found it hard to focus on work. > I was wrapped up in my own problems. But I found that by forcing > myself to work I took my mind away from negative feelings and > felt better about myself. > > I wish the very best of luck to you and your family. > > Alan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2012 Report Share Posted April 15, 2012 Thank you Larry. I appreciate your input. Sounds like we may have similar situation. If you don't mind I want to email you with some questions since your presently on this particular road so to speak. don > > > > > > ... > > > > I'm in a little bit of quandary. ... > > > ... > > > > > > Don, > > > > > > I'm not a doctor and not qualified to give medical advice. All I > > > can do is give you some layman's opinions. > > > > > > The first thing I recommend is to find a good medical oncologist > > > who specializes in prostate cancer. If you live in the land > > > area, which I presume that you do if you were treated at NIH, you > > > could inquire at NIH in Bethesda, at s Hopkins or the > > > University of land Hospitals in Baltimore (Hopkins is > > > especially renowned for prostate cancer), or possibly at > > > town University Hospital. A very famous, and very > > > expensive private prostate cancer specialist not far away is Dr. > > > " Snuffy " Myers. At any of those places you are likely to > > > find someone with significant experience with prostate cancer who > > > is up to date with the latest research - which has been advancing > > > very quickly. > > > > > > From everything I know about the disease, the advice that Chuck > > > gave is likely to be the adivce you'd get from a specialist - to > > > go on androgen deprivation therapy relatively soon. A Gleason 10 > > > cancer is very aggressive. Getting cancer at such a relatively > > > young age also indicates aggressiveness. I would inquire about > > > very aggressive treatment, i.e., ADT3, treatment with a drug such > > > as Lupron to suppress testosterone production, a drug like > > > bicalutamide to block the uptake of testosterone in the prostate > > > cells, and a drug like Dutasteride to block conversion of > > > testosterone to the more potent prostate cancer stimulator > > > dihydrotestosterone. Recently, some patients have even tried a > > > combination of chemotherapy and ADT. Some seem to have gotten a > > > pretty complete remission - though it's too early to tell how > > > long it will last. There are some trials underway on this > > > approach. > > > > > > ADT drugs will change your life. They'll reduce your athletic > > > ability, take away some of your stamina, and destroy your libido. > > > On the other hand they won't destroy your ability to work, to > > > care for and about your family, or to find joy in life. And most > > > importantly, they may also suppress your cancer - possibly for > > > many, many years. > > > > > > A number of new drugs have recently been approved for prostate > > > cancer that can take up where the ADT3 drugs leave off and > > > continue to extend life after the ADT3 drugs have stopped > > > working. There are also a number of additional new drugs in the > > > pipeline. > > > > > > You've been dealt a tough hand, but your low PSA indicates that > > > your cancer is still very small. I think there is a good chance > > > that you can suppress it and keep it from growing. I think there > > > is a good chance that you'll still be here 10 years from, and > > > still have a very small cancer with no symptoms. At that time I > > > expect there will be new options that will help you get another > > > ten years and, who knows, maybe ten or more years after that. > > > > > > > I'm trying to stay positive but it's hard, especially worrisome > > > > I won't be around to raise my 20 month old son. > > > > > > I understand. I wasn't as young as you when I was diagnosed. My > > > children were already grown. And yet I still had many, many > > > sleepless nights and, I must admit, I was depresesed and found > > > myself crying sometimes. I think I know how you must feel. > > > > > > Here's what I recommend: > > > > > > 1. Get the best medical advice that you can. I see that you've > > > been doing that and it is obvious that you have the intelligence > > > and resourcefulness to keep doing that. > > > > > > 2. Ask about aggressive treatment. I _think_ from my layman's > > > point of view, that the most aggressive treatment is desirable. > > > Inquire about clinical trials at NIH and visit these pages to see > > > what is available: > > > > > > http://cancer.gov/clinicaltrials/search/results?protocolsearchid=6158092 & vers=1 > > > > > > 3. Stay committed to athletics. I don't think you'll be able to > > > run any marathons on ADT, but you will be able to do something. > > > Don't let the drugs turn you into a couch potato. If you can't > > > run 25 miles, maybe you can still jog 5. Maybe you can still > > > ride a bike, play tennis, hike, or do something. Don't judge > > > yourself a failure if you have to cut back from where you are > > > now. If you can continue to engage in athletics, even at a > > > reduced level, then you're a winner! > > > > > > 4. I suggest that you tell your friends and family everything. I > > > found that it made everything easier. Tell them what's happening > > > but also put them at their ease. Many of them will not know how > > > to talk to you about it and so will avoid the subject for fear of > > > upsetting you, and you may avoid the subject for fear of > > > upsetting them or having them pity you. But open communication, > > > if you can manage it, may make your life easier. It made my life > > > > > > easier. > > > > > > 5. Focus on your family. Your wife is going through a difficult > > > trial along with you. Help her out. Many patients withdraw into > > > their own world of fear and depression, avoiding their wives and > > > the one relationship that can help them more than any other. ADT > > > will destroy your desire for sex but keep doing it anyway as an > > > expression of love for your wife - and you will find that both of > > > you will get a great deal out of it - even if all you can do is > > > oral and manual sex. Continue to offer physical warmth and love > > > to your wife. > > > > > > 6. Stay committed to your career. I like my work and think it is > > > valuable to others (I'm a computer programmer at the National > > > Cancer Institute.) Initially I found it hard to focus on work. > > > I was wrapped up in my own problems. But I found that by forcing > > > myself to work I took my mind away from negative feelings and > > > felt better about myself. > > > > > > I wish the very best of luck to you and your family. > > > > > > Alan > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2012 Report Share Posted April 15, 2012 Great info Alan. I do plan on contacting Hutchinson. I've seen an medical oncologist there prior to my surgery her name was Dr. Hagano. I would love to meet Dr. Myers. I belong to a local support group called " Tacoma Prostate Support Group " which is part of the USToo organization. I'm hoping I can pull some strings and get an earlier consult. If not i'll call her office. She's local and it may make better sense. Don > >> > >> ... > >> > I'm in a little bit of quandary. ... > >> ... > >> > >> Don, > >> > >> I'm not a doctor and not qualified to give medical advice. All I > >> can do is give you some layman's opinions. > >> > >> The first thing I recommend is to find a good medical oncologist > >> who specializes in prostate cancer. If you live in the land > >> area, which I presume that you do if you were treated at NIH, you > >> could inquire at NIH in Bethesda, at s Hopkins or the > >> University of land Hospitals in Baltimore (Hopkins is > >> especially renowned for prostate cancer), or possibly at > >> town University Hospital. A very famous, and very > >> expensive private prostate cancer specialist not far away is Dr. > >> " Snuffy " Myers. At any of those places you are likely to > >> find someone with significant experience with prostate cancer who > >> is up to date with the latest research - which has been advancing > >> very quickly. > >> > >> From everything I know about the disease, the advice that Chuck > >> gave is likely to be the adivce you'd get from a specialist - to > >> go on androgen deprivation therapy relatively soon. A Gleason 10 > >> cancer is very aggressive. Getting cancer at such a relatively > >> young age also indicates aggressiveness. I would inquire about > >> very aggressive treatment, i.e., ADT3, treatment with a drug such > >> as Lupron to suppress testosterone production, a drug like > >> bicalutamide to block the uptake of testosterone in the prostate > >> cells, and a drug like Dutasteride to block conversion of > >> testosterone to the more potent prostate cancer stimulator > >> dihydrotestosterone. Recently, some patients have even tried a > >> combination of chemotherapy and ADT. Some seem to have gotten a > >> pretty complete remission - though it's too early to tell how > >> long it will last. There are some trials underway on this > >> approach. > >> > >> ADT drugs will change your life. They'll reduce your athletic > >> ability, take away some of your stamina, and destroy your libido. > >> On the other hand they won't destroy your ability to work, to > >> care for and about your family, or to find joy in life. And most > >> importantly, they may also suppress your cancer - possibly for > >> many, many years. > >> > >> A number of new drugs have recently been approved for prostate > >> cancer that can take up where the ADT3 drugs leave off and > >> continue to extend life after the ADT3 drugs have stopped > >> working. There are also a number of additional new drugs in the > >> pipeline. > >> > >> You've been dealt a tough hand, but your low PSA indicates that > >> your cancer is still very small. I think there is a good chance > >> that you can suppress it and keep it from growing. I think there > >> is a good chance that you'll still be here 10 years from, and > >> still have a very small cancer with no symptoms. At that time I > >> expect there will be new options that will help you get another > >> ten years and, who knows, maybe ten or more years after that. > >> > >> > I'm trying to stay positive but it's hard, especially > > worrisome > >> > I won't be around to raise my 20 month old son. > >> > >> I understand. I wasn't as young as you when I was diagnosed. My > >> children were already grown. And yet I still had many, many > >> sleepless nights and, I must admit, I was depresesed and found > >> myself crying sometimes. I think I know how you must feel. > >> > >> Here's what I recommend: > >> > >> 1. Get the best medical advice that you can. I see that you've > >> been doing that and it is obvious that you have the intelligence > >> and resourcefulness to keep doing that. > >> > >> 2. Ask about aggressive treatment. I _think_ from my layman's > >> point of view, that the most aggressive treatment is desirable. > >> Inquire about clinical trials at NIH and visit these pages to see > >> what is available: > >> > >> > > http://cancer.gov/clinicaltrials/search/results?protocolsearchid=6158092 & vers=1 > >> > >> 3. Stay committed to athletics. I don't think you'll be able to > >> run any marathons on ADT, but you will be able to do something. > >> Don't let the drugs turn you into a couch potato. If you can't > >> run 25 miles, maybe you can still jog 5. Maybe you can still > >> ride a bike, play tennis, hike, or do something. Don't judge > >> yourself a failure if you have to cut back from where you are > >> now. If you can continue to engage in athletics, even at a > >> reduced level, then you're a winner! > >> > >> 4. I suggest that you tell your friends and family everything. I > >> found that it made everything easier. Tell them what's happening > >> but also put them at their ease. Many of them will not know how > >> to talk to you about it and so will avoid the subject for fear of > >> upsetting you, and you may avoid the subject for fear of > >> upsetting them or having them pity you. But open communication, > >> if you can manage it, may make your life easier. It made my life > >> > >> easier. > >> > >> 5. Focus on your family. Your wife is going through a difficult > >> trial along with you. Help her out. Many patients withdraw into > >> their own world of fear and depression, avoiding their wives and > >> the one relationship that can help them more than any other. ADT > >> will destroy your desire for sex but keep doing it anyway as an > >> expression of love for your wife - and you will find that both of > >> you will get a great deal out of it - even if all you can do is > >> oral and manual sex. Continue to offer physical warmth and love > >> to your wife. > >> > >> 6. Stay committed to your career. I like my work and think it is > >> valuable to others (I'm a computer programmer at the National > >> Cancer Institute.) Initially I found it hard to focus on work. > >> I was wrapped up in my own problems. But I found that by forcing > >> myself to work I took my mind away from negative feelings and > >> felt better about myself. > >> > >> I wish the very best of luck to you and your family. > >> > >> Alan > Quote Link to comment Share on other sites More sharing options...
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