Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 > When my husband was first diagnosed with Prostate cancer in August/2005 > his Gleason was 4-3. He chose a nerve sparing lapro-surgery. At the time > all this was happening, I really didn't even know what a prostate was, > let alone the choices he was making. I found out that my husband had > been aware of an increasing PSA for two years before we went for a > routine physical and our doctor told him to immediately get a biopsy > with a urologist. My wonderful husband of then 35 years even kept that a > secret and did not make an appointment. That's called " denial. " As well as disregard of Sally's feelings. > Our doctor followed up one Friday evening with a phone call to tell me that my husband had not made > an appointment with the urologist! That is one excellent and thoughtful medic! Don't let him get away. (snip nightmarish story) > His PSA is rising. It has never stopped rising. After his surgery, when > his PSA and results of the post-op biopsy, we chose to follow up with > radiation. After the radiation, which was in 2006, the PSA was at 0.07 > and last week it is at 0.65. Three months ago it was at 0.4. He still > believes that PSA can exist and is not necessarily related to the > cancer. Is this true or is this a myth? > > Is it possible to have PSA after all of this and NOT have it mean that there is cancer somewhere in his > body? After treatment, that amount of PSA is evidence of prostate cancer (PCa) until proven otherwise. If treatments had been effective in eradicating the cancer, the PSA should be undetectable, defined as =/< 0.05 ng/mL. > These last few years can best be described as taking the happiest couple > and putting them into the twilight zone and not letting them out. I > still have no clue how a man thinks about all of this and we have been > married for 37 years. Bluntly stated, as that's the only way to do it, some men suck it up, stand up, study, learn, take charge of their cases, and help their ladies to cope with what is in truth and fact a *couple's* disease. Others don't. > He always makes the best of what is happening and I don't know if he is ignoring the latest increase in PSA or not. I suspect that he is living in a dream, hoping the Bad Thing will go away if it is ignored. It won't. It will get worse. > Women talk about everything, and men tend to keep things private. I understand > that there is a difference in the way we think. The ladies have done a wonderful job of advocating research and education about breast cancer, which after all is said and done has roughly the same statistics of incidence and death. We men have failed miserably, and pay the price every day. > The effects from the > radiation were awful to watch him go through. But, He is positive, > happy, and quietly switched from playing golf, because of leakage and > other problems that related to radiation, to setting a goal to become a > world class soaring pilot for the rest of his life. As a pilot myself, I can understand that desire. But there will come a time when he is simply unable even to climb into the cockpit unless he acts, and soon, to deal with his cancer. If I correctly understand the situation, Husband (name?) has chronic PCa. So do many of us. It means incurable. It does NOT mean a death sentence -- if treated. The best any of us can hope for is death from some other cause. Death from PCa is a horror not to be contemplated. Where are Sally and Husband located? Perhaps I can recommend a true cancer specialist, a medical oncologist. The uro and the rad onc have done their jobs and are of no further use. Here is a link to a portal on the encyclopedic and authoritative site of the Prostate Cancer Research Institute where listings of some experts in treatment (tx) of PCa can be found: http://prostate-cancer.org/resource/find-a-physician.html Scroll down to the link. And there is a huge amount of helpful information on the PCRI site, none of it rooted in advocacy of a particular viewpoint. > When do you seek out other options? One studies and learns and makes a choice and does not look back. > Is hormone therapy worth it? Correctly called androgen deprivation therapy. Sorry: worth what? The side effects? That's for the patient to decide. There are several means of dealing with SEs. And any individual might experience some, none, or all of them, and in varying degrees. The only certainty is UNcertainty. And bear in mind the SEs of failing to treat. Lastly, remember that, if the SEs are just too much, one can simply stop. > Is chemotherapy worth it? See answer above. > Would it be better to just wait another 3 months for another test? Or six months? While whatever is happening continues to happen? > Do I bring this up to him? Do I just let him live his life the way he chooses and try and forget this is > happening? No one can answer that. But my amateur's opinion is that he is committing slow suicide. > He is now 58. Am I making too much out of this increase in PSA? Do you > wait until it gets to be 20 or 40? Not if he wants to live. See above. > If any of you would like to share advice I am listening. I want him to live to be 100,too! I have been straightforward, even blunt, because I hope for the best possible outcome for my brothers and sisters in adversity. But facts are facts, and Mother Nature is red of tooth and claw and she will not be merciful. So She must be opposed with all the determination we, each of us, can muster to our defense. Regards, Steve J " Empowerment: taking responsibility for and authority over one's own outcomes based on education and knowledge of the consequences and contingencies involved in one's own decisions. This focus provides the uplifting energy that can sustain in the face of crisis. " --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled " The Empowered Patient's Guide. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Thank you. I realized after I sent this first post in an emotional frenzy, that I did not mean to write " if " he should consider therapy, but " when " should he consider therapy. We wondered if we hadn't reacted too quickly to the surgical results, and immediately went into radiation, but we first got several opinions prior to proceed with radiation first and not do it in conjunction with androgen therapy. (which from my research I wanted him to do both at the same time) So, with advice from heads of depts at University of Wisc and University of CO, we proceeded with only the radiation therapy at the U of CO. His lapro-surgeon is also the head of a multi-state wide Pca " oncology group..its name escapes me " and has become a good friend in the last 3 1/2 years. I know Bob's surgeon, has also just gotten these results, along with us, because he has remained Bob's " urologist " and doctor since his surgery. What can I say, my husband is one of those guys that everyone likes, even his doctors. I wanted to get out into cyber-world and get some real life knowledge, before Bob calls the Dr or the Dr calls me. (If it is not positive news, he graciously calls me before telling Bob, because he is sensitive to the wife in his practice, and has made a point of always calling me and asking me if I have questions, etc, and also knows that Bob probably would not be telling me the truth, if anything at all.) The real blessing in this is that the Internal med Dr who called me that night, also liked Bob and probably had him figured out after his exam. It was a miracle he called me on a Friday night. You have been extremely straightforward and I really appreciate that. I now know that Bob is in denial or has been given some misinformation about PSA not being associated with cancer. Or, more likely, he has and is trying to convince me not to worry by " inventing " this story. I now know that Bob knows he has Pca. He is pretty smart. I don't think he is trying to convince himself as much as he is trying to convince me. Switched easily from a powered plane to a glider and is circling the fourteener's and can fly for 6 hours without an engine. I know that I am concerned as his " crew " as to wanting to prepare and be prepared for all that might be going on in the coming years. My uncle has been on androgen therapy for six years and last year road a bike all over Europe and is 70 years old, and he wanted my husband to begin the therapy immediately. Uncle vrs University advice. We went with the University. Perhaps the idea of let's give the radiation a try to see if it will work was reasonable. I really appreciate your answers. Knowledge is power. I need to be prepared for the Dr's call, and Bob's argument. The denial part is what I have to deal with now. Slow suicide is an interesting idea. I have to think about that one. I know we have the best oncologist at least in the western US but I appreciate your offer for help. We just haven't used him in this capacity yet. I think. Sally > > > When my husband was first diagnosed with Prostate cancer in August/2005 > > his Gleason was 4-3. He chose a nerve sparing lapro-surgery. At the time > > all this was happening, I really didn't even know what a prostate was, > > let alone the choices he was making. I found out that my husband had > > been aware of an increasing PSA for two years before we went for a > > routine physical and our doctor told him to immediately get a biopsy > > with a urologist. My wonderful husband of then 35 years even kept that a > > secret and did not make an appointment. > > That's called " denial. " > > As well as disregard of Sally's feelings. > > > Our doctor followed up one Friday evening with a phone call to tell me that my husband had not made > > an appointment with the urologist! > > That is one excellent and thoughtful medic! Don't let him get away. > > (snip nightmarish story) > > > His PSA is rising. It has never stopped rising. After his surgery, when > > his PSA and results of the post-op biopsy, we chose to follow up with > > radiation. After the radiation, which was in 2006, the PSA was at 0.07 > > and last week it is at 0.65. Three months ago it was at 0.4. He still > > believes that PSA can exist and is not necessarily related to the > > cancer. Is this true or is this a myth? > > > > Is it possible to have PSA after all of this and NOT have it mean that there is cancer somewhere in his > > body? > > After treatment, that amount of PSA is evidence of prostate cancer (PCa) > until proven otherwise. If treatments had been effective in eradicating > the cancer, the PSA should be undetectable, defined as =/< 0.05 ng/mL. > > > These last few years can best be described as taking the happiest couple > > and putting them into the twilight zone and not letting them out. I > > still have no clue how a man thinks about all of this and we have been > > married for 37 years. > > Bluntly stated, as that's the only way to do it, some men suck it up, > stand up, study, learn, take charge of their cases, and help their > ladies to cope with what is in truth and fact a *couple's* disease. > Others don't. > > > He always makes the best of what is happening and I don't know if he is ignoring the latest increase in PSA or not. > > I suspect that he is living in a dream, hoping the Bad Thing will go > away if it is ignored. It won't. It will get worse. > > > Women talk about everything, and men tend to keep things private. I understand > > that there is a difference in the way we think. > > The ladies have done a wonderful job of advocating research and > education about breast cancer, which after all is said and done has > roughly the same statistics of incidence and death. We men have failed > miserably, and pay the price every day. > > > The effects from the > > radiation were awful to watch him go through. But, He is positive, > > happy, and quietly switched from playing golf, because of leakage and > > other problems that related to radiation, to setting a goal to become a > > world class soaring pilot for the rest of his life. > > As a pilot myself, I can understand that desire. But there will come a > time when he is simply unable even to climb into the cockpit unless he > acts, and soon, to deal with his cancer. > > If I correctly understand the situation, Husband (name?) has chronic > PCa. So do many of us. It means incurable. It does NOT mean a death > sentence -- if treated. The best any of us can hope for is death from > some other cause. Death from PCa is a horror not to be contemplated. > > Where are Sally and Husband located? Perhaps I can recommend a true > cancer specialist, a medical oncologist. The uro and the rad onc have > done their jobs and are of no further use. > > Here is a link to a portal on the encyclopedic and authoritative site of > the Prostate Cancer Research Institute where listings of some experts in > treatment (tx) of PCa can be found: > > http://prostate-cancer.org/resource/find-a-physician.html > > Scroll down to the link. > > And there is a huge amount of helpful information on the PCRI site, none > of it rooted in advocacy of a particular viewpoint. > > > When do you seek out other options? > > One studies and learns and makes a choice and does not look back. > > > Is hormone therapy worth it? > > Correctly called androgen deprivation therapy. Sorry: worth what? The > side effects? That's for the patient to decide. There are several means > of dealing with SEs. And any individual might experience some, none, or > all of them, and in varying degrees. The only certainty is UNcertainty. > > And bear in mind the SEs of failing to treat. > > Lastly, remember that, if the SEs are just too much, one can simply stop. > > > Is chemotherapy worth it? > > See answer above. > > > Would it be better to just wait another 3 months for another test? Or six months? > > While whatever is happening continues to happen? > > > Do I bring this up to him? Do I just let him live his life the way he chooses and try and forget this is > > happening? > > No one can answer that. > > But my amateur's opinion is that he is committing slow suicide. > > > He is now 58. Am I making too much out of this increase in PSA? Do you > > wait until it gets to be 20 or 40? > > Not if he wants to live. See above. > > > If any of you would like to share advice I am listening. I want him to live to be 100,too! > > I have been straightforward, even blunt, because I hope for the best > possible outcome for my brothers and sisters in adversity. But facts are > facts, and Mother Nature is red of tooth and claw and she will not be > merciful. > > So She must be opposed with all the determination we, each of us, can > muster to our defense. > > Regards, > > Steve J > > " Empowerment: taking responsibility for and authority over one's own > outcomes based on education and knowledge of the consequences and > contingencies involved in one's own decisions. This focus provides the > uplifting energy that can sustain in the face of crisis. " > --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled > " The Empowered Patient's Guide. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Thank you. I realized after I sent this first post in an emotional frenzy, that I did not mean to write " if " he should consider therapy, but " when " should he consider therapy. We wondered if we hadn't reacted too quickly to the surgical results, and immediately went into radiation, but we first got several opinions prior to proceed with radiation first and not do it in conjunction with androgen therapy. (which from my research I wanted him to do both at the same time) So, with advice from heads of depts at University of Wisc and University of CO, we proceeded with only the radiation therapy at the U of CO. His lapro-surgeon is also the head of a multi-state wide Pca " oncology group..its name escapes me " and has become a good friend in the last 3 1/2 years. I know Bob's surgeon, has also just gotten these results, along with us, because he has remained Bob's " urologist " and doctor since his surgery. What can I say, my husband is one of those guys that everyone likes, even his doctors. I wanted to get out into cyber-world and get some real life knowledge, before Bob calls the Dr or the Dr calls me. (If it is not positive news, he graciously calls me before telling Bob, because he is sensitive to the wife in his practice, and has made a point of always calling me and asking me if I have questions, etc, and also knows that Bob probably would not be telling me the truth, if anything at all.) The real blessing in this is that the Internal med Dr who called me that night, also liked Bob and probably had him figured out after his exam. It was a miracle he called me on a Friday night. You have been extremely straightforward and I really appreciate that. I now know that Bob is in denial or has been given some misinformation about PSA not being associated with cancer. Or, more likely, he has and is trying to convince me not to worry by " inventing " this story. I now know that Bob knows he has Pca. He is pretty smart. I don't think he is trying to convince himself as much as he is trying to convince me. Switched easily from a powered plane to a glider and is circling the fourteener's and can fly for 6 hours without an engine. I know that I am concerned as his " crew " as to wanting to prepare and be prepared for all that might be going on in the coming years. My uncle has been on androgen therapy for six years and last year road a bike all over Europe and is 70 years old, and he wanted my husband to begin the therapy immediately. Uncle vrs University advice. We went with the University. Perhaps the idea of let's give the radiation a try to see if it will work was reasonable. I really appreciate your answers. Knowledge is power. I need to be prepared for the Dr's call, and Bob's argument. The denial part is what I have to deal with now. Slow suicide is an interesting idea. I have to think about that one. I know we have the best oncologist at least in the western US but I appreciate your offer for help. We just haven't used him in this capacity yet. I think. Sally > > > When my husband was first diagnosed with Prostate cancer in August/2005 > > his Gleason was 4-3. He chose a nerve sparing lapro-surgery. At the time > > all this was happening, I really didn't even know what a prostate was, > > let alone the choices he was making. I found out that my husband had > > been aware of an increasing PSA for two years before we went for a > > routine physical and our doctor told him to immediately get a biopsy > > with a urologist. My wonderful husband of then 35 years even kept that a > > secret and did not make an appointment. > > That's called " denial. " > > As well as disregard of Sally's feelings. > > > Our doctor followed up one Friday evening with a phone call to tell me that my husband had not made > > an appointment with the urologist! > > That is one excellent and thoughtful medic! Don't let him get away. > > (snip nightmarish story) > > > His PSA is rising. It has never stopped rising. After his surgery, when > > his PSA and results of the post-op biopsy, we chose to follow up with > > radiation. After the radiation, which was in 2006, the PSA was at 0.07 > > and last week it is at 0.65. Three months ago it was at 0.4. He still > > believes that PSA can exist and is not necessarily related to the > > cancer. Is this true or is this a myth? > > > > Is it possible to have PSA after all of this and NOT have it mean that there is cancer somewhere in his > > body? > > After treatment, that amount of PSA is evidence of prostate cancer (PCa) > until proven otherwise. If treatments had been effective in eradicating > the cancer, the PSA should be undetectable, defined as =/< 0.05 ng/mL. > > > These last few years can best be described as taking the happiest couple > > and putting them into the twilight zone and not letting them out. I > > still have no clue how a man thinks about all of this and we have been > > married for 37 years. > > Bluntly stated, as that's the only way to do it, some men suck it up, > stand up, study, learn, take charge of their cases, and help their > ladies to cope with what is in truth and fact a *couple's* disease. > Others don't. > > > He always makes the best of what is happening and I don't know if he is ignoring the latest increase in PSA or not. > > I suspect that he is living in a dream, hoping the Bad Thing will go > away if it is ignored. It won't. It will get worse. > > > Women talk about everything, and men tend to keep things private. I understand > > that there is a difference in the way we think. > > The ladies have done a wonderful job of advocating research and > education about breast cancer, which after all is said and done has > roughly the same statistics of incidence and death. We men have failed > miserably, and pay the price every day. > > > The effects from the > > radiation were awful to watch him go through. But, He is positive, > > happy, and quietly switched from playing golf, because of leakage and > > other problems that related to radiation, to setting a goal to become a > > world class soaring pilot for the rest of his life. > > As a pilot myself, I can understand that desire. But there will come a > time when he is simply unable even to climb into the cockpit unless he > acts, and soon, to deal with his cancer. > > If I correctly understand the situation, Husband (name?) has chronic > PCa. So do many of us. It means incurable. It does NOT mean a death > sentence -- if treated. The best any of us can hope for is death from > some other cause. Death from PCa is a horror not to be contemplated. > > Where are Sally and Husband located? Perhaps I can recommend a true > cancer specialist, a medical oncologist. The uro and the rad onc have > done their jobs and are of no further use. > > Here is a link to a portal on the encyclopedic and authoritative site of > the Prostate Cancer Research Institute where listings of some experts in > treatment (tx) of PCa can be found: > > http://prostate-cancer.org/resource/find-a-physician.html > > Scroll down to the link. > > And there is a huge amount of helpful information on the PCRI site, none > of it rooted in advocacy of a particular viewpoint. > > > When do you seek out other options? > > One studies and learns and makes a choice and does not look back. > > > Is hormone therapy worth it? > > Correctly called androgen deprivation therapy. Sorry: worth what? The > side effects? That's for the patient to decide. There are several means > of dealing with SEs. And any individual might experience some, none, or > all of them, and in varying degrees. The only certainty is UNcertainty. > > And bear in mind the SEs of failing to treat. > > Lastly, remember that, if the SEs are just too much, one can simply stop. > > > Is chemotherapy worth it? > > See answer above. > > > Would it be better to just wait another 3 months for another test? Or six months? > > While whatever is happening continues to happen? > > > Do I bring this up to him? Do I just let him live his life the way he chooses and try and forget this is > > happening? > > No one can answer that. > > But my amateur's opinion is that he is committing slow suicide. > > > He is now 58. Am I making too much out of this increase in PSA? Do you > > wait until it gets to be 20 or 40? > > Not if he wants to live. See above. > > > If any of you would like to share advice I am listening. I want him to live to be 100,too! > > I have been straightforward, even blunt, because I hope for the best > possible outcome for my brothers and sisters in adversity. But facts are > facts, and Mother Nature is red of tooth and claw and she will not be > merciful. > > So She must be opposed with all the determination we, each of us, can > muster to our defense. > > Regards, > > Steve J > > " Empowerment: taking responsibility for and authority over one's own > outcomes based on education and knowledge of the consequences and > contingencies involved in one's own decisions. This focus provides the > uplifting energy that can sustain in the face of crisis. " > --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled > " The Empowered Patient's Guide. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Sally, I am not qualified to give you the advice you are seeking. I have no medical qualifications, and even if I did, each case must be dealt with on its merits – including full medical history etc. But what I can do is give you my personal views which have been built up over the last 12+ years, so here goes, in answer to your specific questions. As you will see many of my views differ considerably from those of Steve J. Please understand that I am not contradicting his advice; I do not believe he is wrong in what he says – I just have a different view and perhaps that illustrates the problem of prostate cancer – the lack of certainty, the differing views. Anyhow, just to confuse you, here goes: 1. He still believes that PSA can exist and is not necessarily related to the cancer. Is this true or is this a myth? The truth is that PSA is NOT prostate cancer specific. NOT prostate cancer specific. So yes, PSA does exist frequently and is not related to prostate cancer. It is not even prostate gland specific, being produced, albeit in very small quantities, by other glands in the body, which is what makes ultra sensitive PSA tests unreliable at times. 2. Is it possible to have PSA after all of this and NOT have it mean that there is cancer somewhere in his body? Theoretically it may be possible. You may have seen from another post “PSA after radical prostatectomy” that it is less unusual than many people think to have a PSA reading even after complete removal of the gland. In your husband’s case, having had surgery and radiation therapy, I would have to say that some small tumours may be behind this small but constant rise in PSA numbers. But before you hit the panic button, keep in mind that not all cancers are equal: some need immediate attention, others can wait a while 3. When do you seek out other options? That depends on your outlook on life and how concerned you are. In my early days I came across this story by Tom Feeney (it’s at http://www.prostatepointers.org/ww/ - just page down the index on the left side of the page and click on About Tom Feeney if you are interested.) In it Tom describes how he dealt with a rising PSA after failed EBRT (External Beam Radiation Therapy) I’m not suggesting that what suited Tom would suit your position, but it certainly gave me a different view and one which influenced the areas I then studied very closely. As you will see the page hasn’t been updated since 1999 and that is because Tom has passed on – from a heart condition, still the major cause of death in men, even men with PCa. 4. Is hormone therapy worth it? I think that ADT (Androgen Deprivation Therapy) as hormone therapy is normally referred to is worthwhile in managing the disease and increasing potential lifespan – I am on intermittent therapy now. The studies, as ever, are not conclusive, but there is enough evidence to convince me that for my particular ‘brand’ of PCa it is a good choice. In line with my minimal intervention approach I tried Zoladex initially and had no serious side effects and certainly no side effects that continued after I stopped the therapy. This is not the case with all men, some of whom have severe reactions to these drugs – but if one drug gives a problem another might not and you have the option of trying out various options and combinations. 5. Is chemotherapy worth it? It is my belief that you should not even be contemplating chemotherapy now. This is usually kept in reserve for what is termed Androgen Independent or Hormone Resistant prostate cancer, which is to say when hormone therapy fails. It is a very complex issue, with many options and some success stories, but, as I say this seems an inappropriate option for you right now. 6. Would it be better to just wait another 3 months for another test? Or six months? If you’d feel happier with another test, then get one – but make sure that it is from the same organization using the same test system – all labs have been known to change systems from time to time without telling patients and the differing results can cause anxiety. I assume you know what actions can cause an elevated PSA - so make sure your husband avoids those before having the test ( and bear in mind that German studies have shown that PSA levels tend to be a little higher in Spring than they are in Fall) 7. Do I bring this up to him? Do I just let him live his life the way he chooses and try and forget this is happening? Well, now we’re into a very personal area where no-one but you can know what to do. I still correspond with a woman whose husband was diagnosed at about the same time as I was – 1996. He read up what he wanted to and decided that, as he had a greater chance of dying from any number of causes (prostate cancer accounts for only 3% of male deaths) he would just get on with his life. His only concession to her concerns was that he would have regular PSA checks – every 6 months. His PSA has varied from about 7 to about 20 over that period, up and down like a roller coaster. His wife is still concerned, but apparently he is not. Does that make him selfish or her a worry-guts? I don’t know. 8. He is now 58. Am I making too much out of this increase in PSA? Do you wait until it gets to be 20 or 40? My personal decision was that I would not take any action until either the rate of my PSA increase was such that the probabilities were that it was PCa related and not from any other cause or if I developed symptoms or there was other evidence, from the bone scans I had every two years. That time arrived when my PSA was 42.0 and my oncologist suggested that I might like to think about doing something – or leave it a bit longer: my choice. As I say I chose intermittent ADT, with his agreement and my PSA dropped to 0.20. Since I stopped the ADT it has gone up a bit to 0.36. so where do I go from here? My oncologist says he’s happy to wait until it gets to about 40.0 again, all things being equal: my MD says I should go back on to the therapy now. Who is ‘right’; who is ‘wrong’, whose advice should I take? My money is on the oncologist. As I say, this is my personal view. It is not one shared by the majority of doctors, especially those in the USA For what it is worth, I think that you might both benefit by both finding a friendly oncologist, especially if you can find one who specializes in prostate cancer and discuss your issues with him. The way I have approached my decision making from the start has been along the following lines: A. What are my options? B. Which option is best for me, in your opinion C. If you were in my position would you choose this option (that produces some very interesting responses, I can tell you) D. Why have you recommended this option and is there any literature I can read supporting that recommendation so that I understand it fully before I make my decision? I hope this helps some. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of ragamuffin1951 Sent: Tuesday, 17 March 2009 9:25 AM To: ProstateCancerSupport Subject: I NEED ADVICE HI, everyone, When my husband was first diagnosed with Prostate cancer in August/2005 his Gleason was 4-3. He chose a nerve sparing lapro-surgery. At the time all this was happening, I really didn't even know what a prostate was, let alone the choices he was making. I found out that my husband had been aware of an increasing PSA for two years before we went for a routine physical and our doctor told him to immediately get a biopsy with a urologist. My wonderful husband of then 35 years even kept that a secret and did not make an appointment. Our doctor followed up one Friday evening with a phone call to tell me that my husband had not made an appointment with the urologist! Talk about the beginning of a nightmare. I was with him when he had the biopsy, and I have been with him at every appointment, surgery, radiation, and consultations. We have sought the best advice, found the best doctors, and I think I have Prostate for Dummies memorized. This has taken place over a period of now 3 1/2 years. His PSA is rising. It has never stopped rising. After his surgery, when his PSA and results of the post-op biopsy, we chose to follow up with radiation. After the radiation, which was in 2006, the PSA was at 0.07 and last week it is at 0.65. Three months ago it was at 0.4. He still believes that PSA can exist and is not necessarily related to the cancer. Is this true or is this a myth? Is it possible to have PSA after all of this and NOT have it mean that there is cancer somewhere in his body? These last few years can best be described as taking the happiest couple and putting them into the twilight zone and not letting them out. I still have no clue how a man thinks about all of this and we have been married for 37 years. He always makes the best of what is happening and I don't know if he is ignoring the latest increase in PSA or not. Women talk about everything, and men tend to keep things private. I understand that there is a difference in the way we think. The effects from the radiation were awful to watch him go through. But, He is positive, happy, and quietly switched from playing golf, because of leakage and other problems that related to radiation, to setting a goal to become a world class soaring pilot for the rest of his life. He wants to live to be 100. I decided to enter this site because I would like to hear from someone who has taken this path, and tell me what is ahead for us right now? When do you seek out other options? Is hormone therapy worth it? Is chemotherapy worth it? Would it be better to just wait another 3 months for another test? Or six months? Do I bring this up to him? Do I just let him live his life the way he chooses and try and forget this is happening? He is now 58. Am I making too much out of this increase in PSA? Do you wait until it gets to be 20 or 40? If any of you would like to share advice I am listening. I want him to live to be 100,too! Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Sally, I am not qualified to give you the advice you are seeking. I have no medical qualifications, and even if I did, each case must be dealt with on its merits – including full medical history etc. But what I can do is give you my personal views which have been built up over the last 12+ years, so here goes, in answer to your specific questions. As you will see many of my views differ considerably from those of Steve J. Please understand that I am not contradicting his advice; I do not believe he is wrong in what he says – I just have a different view and perhaps that illustrates the problem of prostate cancer – the lack of certainty, the differing views. Anyhow, just to confuse you, here goes: 1. He still believes that PSA can exist and is not necessarily related to the cancer. Is this true or is this a myth? The truth is that PSA is NOT prostate cancer specific. NOT prostate cancer specific. So yes, PSA does exist frequently and is not related to prostate cancer. It is not even prostate gland specific, being produced, albeit in very small quantities, by other glands in the body, which is what makes ultra sensitive PSA tests unreliable at times. 2. Is it possible to have PSA after all of this and NOT have it mean that there is cancer somewhere in his body? Theoretically it may be possible. You may have seen from another post “PSA after radical prostatectomy” that it is less unusual than many people think to have a PSA reading even after complete removal of the gland. In your husband’s case, having had surgery and radiation therapy, I would have to say that some small tumours may be behind this small but constant rise in PSA numbers. But before you hit the panic button, keep in mind that not all cancers are equal: some need immediate attention, others can wait a while 3. When do you seek out other options? That depends on your outlook on life and how concerned you are. In my early days I came across this story by Tom Feeney (it’s at http://www.prostatepointers.org/ww/ - just page down the index on the left side of the page and click on About Tom Feeney if you are interested.) In it Tom describes how he dealt with a rising PSA after failed EBRT (External Beam Radiation Therapy) I’m not suggesting that what suited Tom would suit your position, but it certainly gave me a different view and one which influenced the areas I then studied very closely. As you will see the page hasn’t been updated since 1999 and that is because Tom has passed on – from a heart condition, still the major cause of death in men, even men with PCa. 4. Is hormone therapy worth it? I think that ADT (Androgen Deprivation Therapy) as hormone therapy is normally referred to is worthwhile in managing the disease and increasing potential lifespan – I am on intermittent therapy now. The studies, as ever, are not conclusive, but there is enough evidence to convince me that for my particular ‘brand’ of PCa it is a good choice. In line with my minimal intervention approach I tried Zoladex initially and had no serious side effects and certainly no side effects that continued after I stopped the therapy. This is not the case with all men, some of whom have severe reactions to these drugs – but if one drug gives a problem another might not and you have the option of trying out various options and combinations. 5. Is chemotherapy worth it? It is my belief that you should not even be contemplating chemotherapy now. This is usually kept in reserve for what is termed Androgen Independent or Hormone Resistant prostate cancer, which is to say when hormone therapy fails. It is a very complex issue, with many options and some success stories, but, as I say this seems an inappropriate option for you right now. 6. Would it be better to just wait another 3 months for another test? Or six months? If you’d feel happier with another test, then get one – but make sure that it is from the same organization using the same test system – all labs have been known to change systems from time to time without telling patients and the differing results can cause anxiety. I assume you know what actions can cause an elevated PSA - so make sure your husband avoids those before having the test ( and bear in mind that German studies have shown that PSA levels tend to be a little higher in Spring than they are in Fall) 7. Do I bring this up to him? Do I just let him live his life the way he chooses and try and forget this is happening? Well, now we’re into a very personal area where no-one but you can know what to do. I still correspond with a woman whose husband was diagnosed at about the same time as I was – 1996. He read up what he wanted to and decided that, as he had a greater chance of dying from any number of causes (prostate cancer accounts for only 3% of male deaths) he would just get on with his life. His only concession to her concerns was that he would have regular PSA checks – every 6 months. His PSA has varied from about 7 to about 20 over that period, up and down like a roller coaster. His wife is still concerned, but apparently he is not. Does that make him selfish or her a worry-guts? I don’t know. 8. He is now 58. Am I making too much out of this increase in PSA? Do you wait until it gets to be 20 or 40? My personal decision was that I would not take any action until either the rate of my PSA increase was such that the probabilities were that it was PCa related and not from any other cause or if I developed symptoms or there was other evidence, from the bone scans I had every two years. That time arrived when my PSA was 42.0 and my oncologist suggested that I might like to think about doing something – or leave it a bit longer: my choice. As I say I chose intermittent ADT, with his agreement and my PSA dropped to 0.20. Since I stopped the ADT it has gone up a bit to 0.36. so where do I go from here? My oncologist says he’s happy to wait until it gets to about 40.0 again, all things being equal: my MD says I should go back on to the therapy now. Who is ‘right’; who is ‘wrong’, whose advice should I take? My money is on the oncologist. As I say, this is my personal view. It is not one shared by the majority of doctors, especially those in the USA For what it is worth, I think that you might both benefit by both finding a friendly oncologist, especially if you can find one who specializes in prostate cancer and discuss your issues with him. The way I have approached my decision making from the start has been along the following lines: A. What are my options? B. Which option is best for me, in your opinion C. If you were in my position would you choose this option (that produces some very interesting responses, I can tell you) D. Why have you recommended this option and is there any literature I can read supporting that recommendation so that I understand it fully before I make my decision? I hope this helps some. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of ragamuffin1951 Sent: Tuesday, 17 March 2009 9:25 AM To: ProstateCancerSupport Subject: I NEED ADVICE HI, everyone, When my husband was first diagnosed with Prostate cancer in August/2005 his Gleason was 4-3. He chose a nerve sparing lapro-surgery. At the time all this was happening, I really didn't even know what a prostate was, let alone the choices he was making. I found out that my husband had been aware of an increasing PSA for two years before we went for a routine physical and our doctor told him to immediately get a biopsy with a urologist. My wonderful husband of then 35 years even kept that a secret and did not make an appointment. Our doctor followed up one Friday evening with a phone call to tell me that my husband had not made an appointment with the urologist! Talk about the beginning of a nightmare. I was with him when he had the biopsy, and I have been with him at every appointment, surgery, radiation, and consultations. We have sought the best advice, found the best doctors, and I think I have Prostate for Dummies memorized. This has taken place over a period of now 3 1/2 years. His PSA is rising. It has never stopped rising. After his surgery, when his PSA and results of the post-op biopsy, we chose to follow up with radiation. After the radiation, which was in 2006, the PSA was at 0.07 and last week it is at 0.65. Three months ago it was at 0.4. He still believes that PSA can exist and is not necessarily related to the cancer. Is this true or is this a myth? Is it possible to have PSA after all of this and NOT have it mean that there is cancer somewhere in his body? These last few years can best be described as taking the happiest couple and putting them into the twilight zone and not letting them out. I still have no clue how a man thinks about all of this and we have been married for 37 years. He always makes the best of what is happening and I don't know if he is ignoring the latest increase in PSA or not. Women talk about everything, and men tend to keep things private. I understand that there is a difference in the way we think. The effects from the radiation were awful to watch him go through. But, He is positive, happy, and quietly switched from playing golf, because of leakage and other problems that related to radiation, to setting a goal to become a world class soaring pilot for the rest of his life. He wants to live to be 100. I decided to enter this site because I would like to hear from someone who has taken this path, and tell me what is ahead for us right now? When do you seek out other options? Is hormone therapy worth it? Is chemotherapy worth it? Would it be better to just wait another 3 months for another test? Or six months? Do I bring this up to him? Do I just let him live his life the way he chooses and try and forget this is happening? He is now 58. Am I making too much out of this increase in PSA? Do you wait until it gets to be 20 or 40? If any of you would like to share advice I am listening. I want him to live to be 100,too! Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hello Sally Get your husbands vitamin D levels checked. There is a good deal of data suggesting that low levels predispose to the disease and affect outcomes. take a look at www.vitaminD3world.com under cancer treatment. Also sign up for the sites newsletter, they are following a number of trials using high dose vitmain d and issues updates when the results come out good luck Mike To: ProstateCancerSupport Sent: Monday, March 16, 2009 6:25:19 PMSubject: I NEED ADVICE HI, everyone,When my husband was first diagnosed with Prostate cancer in August/2005 his Gleason was 4-3. He chose a nerve sparing lapro-surgery. At the time all this was happening, I really didn't even know what a prostate was, let alone the choices he was making. I found out that my husband had been aware of an increasing PSA for two years before we went for a routine physical and our doctor told him to immediately get a biopsy with a urologist. My wonderful husband of then 35 years even kept that a secret and did not make an appointment. Our doctor followed up one Friday evening with a phone call to tell me that my husband had not made an appointment with the urologist! Talk about the beginning of a nightmare. I was with him when he had the biopsy, and I have been with him at every appointment, surgery, radiation, and consultations. We have sought the best advice, found the best doctors, and I think I have Prostate for Dummies memorized. This has taken place over a period of now 3 1/2 years. His PSA is rising. It has never stopped rising. After his surgery, when his PSA and results of the post-op biopsy, we chose to follow up with radiation. After the radiation, which was in 2006, the PSA was at 0.07 and last week it is at 0.65. Three months ago it was at 0.4. He still believes that PSA can exist and is not necessarily related to the cancer. Is this true or is this a myth? Is it possible to have PSA after all of this and NOT have it mean that there is cancer somewhere in his body? These last few years can best be described as taking the happiest couple and putting them into the twilight zone and not letting them out. I still have no clue how a man thinks about all of this and we have been married for 37 years. He always makes the best of what is happening and I don't know if he is ignoring the latest increase in PSA or not. Women talk about everything, and men tend to keep things private. I understand that there is a difference in the way we think. The effects from the radiation were awful to watch him go through. But, He is positive, happy, and quietly switched from playing golf, because of leakage and other problems that related to radiation, to setting a goal to become a world class soaring pilot for the rest of his life. He wants to live to be 100. I decided to enter this site because I would like to hear from someone who has taken this path, and tell me what is ahead for us right now? When do you seek out other options? Is hormone therapy worth it? Is chemotherapy worth it? Would it be better to just wait another 3 months for another test? Or six months? Do I bring this up to him? Do I just let him live his life the way he chooses and try and forget this is happening? He is now 58. Am I making too much out of this increase in PSA? Do you wait until it gets to be 20 or 40? If any of you would like to share advice I am listening. I want him to live to be 100,too!Sally Quote Link to comment Share on other sites More sharing options...
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