WATCHFUL WAITING

zman
zman Member Posts: 2
edited March 2014 in Prostate Cancer #1
I'M 46 AND WAS RECENTLY DIAGNOSED WITH LOCALIZED PROSTATE CANCER. MY PSA IS 0.4 AND I'M T2A. I'M SCHEDULED FOR A 2ND BIOPSIE IN APRIL TO SEE IF THERE IS A CHANGE. I'M CONSIDERING ALL OF THE TREATMENT OPTIONS AT THIS TIME BUT AM IN NO HURY AT THIS POINT. SEX IS VERY IMPORTANT. ANY SUGGESTIONS?
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Comments

  • nutt
    nutt Member Posts: 140
    I agree, there isn't anything better than sex, except your health.

    You seem to be in a good position. Have time to do the necessary research. Evaluate the possibilities with your doctors / family and make an INFORMED decision based on your DECISION. It has to be yours.

    Suggest you start by reading from this point back all of the postings and their replys. You will find a lot of good information by a lot of good, well meaning folks like you.

    List all of the terms, questions and options you glean from these emails and then, put them in another email back to this website and we can give your our various experiences / fears / thoughts etc... BUT, you need to do your part and do research. Use this webpage or type in cancer on any search engine and it will give you more than you wanted.

    During the meantime, I know sex is important to you but ask your doctor at what point if any he would consider hormone therapy while you watchfully wait. There are side effects (sexual disfunction) but at some point in your waiting it may be useful, especially in advance of any procedure being considered.

    Check with your doctor but research --- start here reading past questions / responses.

    Stay in touch and God bless.
    Joe
  • Benji48
    Benji48 Member Posts: 117
    I agree with Nutt whole-heartedly but I have one question/comment. I wonder how it was that you underwent a biopsy with such a low psa reading, 0.4? Did you have any prior procedures like a t.u.r.p. for example or is the # 0.4 a typo & should read 4.0??
    Benji
  • zman
    zman Member Posts: 2
    Benji48 said:

    I agree with Nutt whole-heartedly but I have one question/comment. I wonder how it was that you underwent a biopsy with such a low psa reading, 0.4? Did you have any prior procedures like a t.u.r.p. for example or is the # 0.4 a typo & should read 4.0??
    Benji

    I'VE HAD PROSTITITIS FOR ABOUT 13 YRS. AND DURING AN EXAM ABOUT 2 MONTHS AGO THE DR. FELT A HARD SPOT WHICH ACTUALLY WAS A CALCIUM DEPOSIT. THE CANCER WAS NOT IN THAT SPOT. MY PSA IS 0.4 AND MY GLEASON SCORE IS 4. THE BIOPSIE WAS DONE FOR THE ABOVE REASON PLUS MY DAD HAD HIS PROSTATE REMOVED WHEN HE WAS 65 DO TO CANCER AND HIS PSA WAS ALSO LOW. I MUST SAY WITH THE READING I'VE DONE SO FAR THE SEXUAL FUNCTIONS COMMENTS ARE NOT ENCOURAGING. I HONESTLY DON'T KNOW IF I CAN HANDLE IT MENTALLY, BUT I ALSO DON'T WANT TO WAIT TO LONG.
  • lindatn
    lindatn Member Posts: 229
    Have you considered alternative treatment? Like chainging your diet, herbs, My husband had a psa of 60, he did have radiation as that was the only thing they could do. Told him he would have to stay on Lupron after three months he said NO WAY. We gave up all sugar, all fat, all meat and all diary. His PSA is .3 today and considering his age and the high PSA with what the Drs thought was a untreatable cancer we are pleased. Sex life is fine. Linda
  • Benji48
    Benji48 Member Posts: 117
    lindatn said:

    Have you considered alternative treatment? Like chainging your diet, herbs, My husband had a psa of 60, he did have radiation as that was the only thing they could do. Told him he would have to stay on Lupron after three months he said NO WAY. We gave up all sugar, all fat, all meat and all diary. His PSA is .3 today and considering his age and the high PSA with what the Drs thought was a untreatable cancer we are pleased. Sex life is fine. Linda

    Hi,
    I have a couple of questions! What was your husbands age at the time of initial analysis & why was it "the only thing they could do"?? Did other health issues preclude any of the other treatments??
    Also,what is/was the time span between the radiation treatments & the measurement of 0.3 psa level??
    One final note, you mention that he has eliminated many items in his diet but specifically what is included??
    Thank you, Benji
  • lindatn
    lindatn Member Posts: 229
    Due to the high psa surgery was not even considered. He had 42 external radiation with 16 to just the prostate. They said he would have to stay on Lupron, he had the last shot on July 31 of 2003 after he finished radiation the week before. He said no more Lupron! Psa was last done on Dec 19th with the reading of .3 He is a very healthy 62 year old. Doctors had told him to expect to live maybe ten years. This was not good enough for us so we went to a alternative Dr in FL, She started him on herbs also we started on several proven cancer fighting minerals and plant extracts. He takes saw palmetto, Lycopene, Q-gel{COQ10} Selenium{SeMSC} zyFlamend, a pateneted SC-CASE product under study for cancer treatment. Grapeseed Extract and other vitamins C and E being the most important. Also Indole 3-Carbinol. As I said we eat no red meat, no sugar, no diary, some cold water fish and a egg a couple times a week. Will it continue to work time will tell but sure a better way of living then Lupron. Having had breast cancer two years ago I became interested in alternatives at that time but did subject my body to chemo, and radiation if I had to do it over again I would probably say no. Linda
  • lindatn
    lindatn Member Posts: 229
    Due to the high psa surgery was not even considered. He had 42 external radiation with 16 to just the prostate. They said he would have to stay on Lupron, he had the last shot on July 31 of 2003 after he finished radiation the week before. He said no more Lupron! Psa was last done on Dec 19th with the reading of .3 He is a very healthy 62 year old. Doctors had told him to expect to live maybe ten years. This was not good enough for us so we went to a alternative Dr in FL, She started him on herbs also we started on several proven cancer fighting minerals and plant extracts. He takes saw palmetto, Lycopene, Q-gel{COQ10} Selenium{SeMSC} zyFlamend, a pateneted SC-CASE product under study for cancer treatment. Grapeseed Extract and other vitamins C and E being the most important. Also Indole 3-Carbinol. As I said we eat no red meat, no sugar, no diary, some cold water fish and a egg a couple times a week. Will it continue to work time will tell but sure a better way of living then Lupron. Having had breast cancer two years ago I became interested in alternatives at that time but did subject my body to chemo, and radiation if I had to do it over again I would probably say no. Linda
  • nutt
    nutt Member Posts: 140
    lindatn said:

    Due to the high psa surgery was not even considered. He had 42 external radiation with 16 to just the prostate. They said he would have to stay on Lupron, he had the last shot on July 31 of 2003 after he finished radiation the week before. He said no more Lupron! Psa was last done on Dec 19th with the reading of .3 He is a very healthy 62 year old. Doctors had told him to expect to live maybe ten years. This was not good enough for us so we went to a alternative Dr in FL, She started him on herbs also we started on several proven cancer fighting minerals and plant extracts. He takes saw palmetto, Lycopene, Q-gel{COQ10} Selenium{SeMSC} zyFlamend, a pateneted SC-CASE product under study for cancer treatment. Grapeseed Extract and other vitamins C and E being the most important. Also Indole 3-Carbinol. As I said we eat no red meat, no sugar, no diary, some cold water fish and a egg a couple times a week. Will it continue to work time will tell but sure a better way of living then Lupron. Having had breast cancer two years ago I became interested in alternatives at that time but did subject my body to chemo, and radiation if I had to do it over again I would probably say no. Linda

    Linda,
    Most of the herbs / minerals etc.. are pretty much recognized to have some beneficial / preventative aspect so, I would also make the coupling to " it can't hurt particulairly for those of us that have / had cancer."

    Much of what I have read indicates that cancer is also genetic, to a large segment ,and our life style, including diet are not the best form of maintaining good health. It may help in a cure or prolong return of cancer.?? I don't know.

    There was also a study (Arizona?) going on (providing you elected RP) where my doctor injects the patient with high doses of selenium for several weeks prior to RP, and then has the prostate (samples) sent to this Dr. for followup study. Not sure what the results were but I believe you when you say these things can help. There are / were many studies. How much help or what effect if done early in life, are all guesses but, if he is comfortable doing them, go for it. I still take selenium, Vitamin C and eat tomatoes etc.. .

    As I have always stressed, as long as WE, the patients with cancer, research all the possibilities and make OUR own decision, I respect his not to have Lupron further and he need not justify any of it. I however, may have choosen otherwise or a combination of both. Much for the same reason you went to non-meat and herbs. If, it has some proven benefit why not? To much of a herb etc.. can have a negative impact as well - similiar to side effects with Lupron.

    I was extremetly pleased to see that you all took control and explored another opinion / option. To many of our brethen take what they are told literally, as being final. Our doctors are human and are very experienced in maybe one or two aspects of treatment and do not claim to know it all.

    I was on Lupron 3 months before and 3 months after radiated seed implant. Had mood swings (loved to go shopping) etc..., etc.. but it was my informed decision.

    He, at 62, me at <60 would most likely consideer doing something similiar in his shoes. We wish him well, and will, as with all our members (women & men), will be praying for all of us.

    Stay in touch and let us know how the herbs/diet is working. Lork knows it can't hurt, it is just our way of life (indifference, ignorance and maybe some stupidy) that prevents us from doing it until some major event happens.

    For those of us where sex is an important part of "us", I can only reflect on how important it would be if I were not alive? I have, as everyone does in life, made adjustments (cancer, job, marriage etc..), altered what, where and how I do things --similiar to you all, going to non-meats etc... You adapted. That is not bad, it is a matter of choice or "free will". I would have adapted for the Lupron, even if lower dosage.

    God Bless
    Joe
  • Benji48
    Benji48 Member Posts: 117
    nutt said:

    Linda,
    Most of the herbs / minerals etc.. are pretty much recognized to have some beneficial / preventative aspect so, I would also make the coupling to " it can't hurt particulairly for those of us that have / had cancer."

    Much of what I have read indicates that cancer is also genetic, to a large segment ,and our life style, including diet are not the best form of maintaining good health. It may help in a cure or prolong return of cancer.?? I don't know.

    There was also a study (Arizona?) going on (providing you elected RP) where my doctor injects the patient with high doses of selenium for several weeks prior to RP, and then has the prostate (samples) sent to this Dr. for followup study. Not sure what the results were but I believe you when you say these things can help. There are / were many studies. How much help or what effect if done early in life, are all guesses but, if he is comfortable doing them, go for it. I still take selenium, Vitamin C and eat tomatoes etc.. .

    As I have always stressed, as long as WE, the patients with cancer, research all the possibilities and make OUR own decision, I respect his not to have Lupron further and he need not justify any of it. I however, may have choosen otherwise or a combination of both. Much for the same reason you went to non-meat and herbs. If, it has some proven benefit why not? To much of a herb etc.. can have a negative impact as well - similiar to side effects with Lupron.

    I was extremetly pleased to see that you all took control and explored another opinion / option. To many of our brethen take what they are told literally, as being final. Our doctors are human and are very experienced in maybe one or two aspects of treatment and do not claim to know it all.

    I was on Lupron 3 months before and 3 months after radiated seed implant. Had mood swings (loved to go shopping) etc..., etc.. but it was my informed decision.

    He, at 62, me at <60 would most likely consideer doing something similiar in his shoes. We wish him well, and will, as with all our members (women & men), will be praying for all of us.

    Stay in touch and let us know how the herbs/diet is working. Lork knows it can't hurt, it is just our way of life (indifference, ignorance and maybe some stupidy) that prevents us from doing it until some major event happens.

    For those of us where sex is an important part of "us", I can only reflect on how important it would be if I were not alive? I have, as everyone does in life, made adjustments (cancer, job, marriage etc..), altered what, where and how I do things --similiar to you all, going to non-meats etc... You adapted. That is not bad, it is a matter of choice or "free will". I would have adapted for the Lupron, even if lower dosage.

    God Bless
    Joe</p>

    I'll start by saying it's a sure fact that our western (non-asian) diet is the major culprit BUT I would question the "beneficial/preventitive" results of these items afterthe fact. Does his doctor know for example that he's taking Saw Palmetto which is know to mask the psa readings, but whether it attacks the cancer cells is another argument! If it makes him feel good to have a psa of 0.3, so be it, but lets not delude ourselves!
    Secondly I suspect with such a short time span between the last Lupron shot & the reading its most likely due to the residules of the Lupron!Plus what level of shot did hge recieve?? 7.5cc lasts for a month, 30cc for 4 months! By the way that's what therapy I'm on & I don't have any problems with it at all! I don't mean to poo poo all this herbal treatment stuff only lets be realistic when we wish to publish what might be contrued as "data".
    Benji
  • lindatn
    lindatn Member Posts: 229
    Benji, Husband had his last 30 day shot on July 31 so not likely by the third week in Dec was it the Lupron. Please give me the article that says Saw Palmetto changes the reading of PSA, I hate to tell you but that is what Lupron does. His testosterome reading in Dec was normal for a man his age. I only thought the young man with the low psa and gleason maybe should look at one more thing before he rushed into anything. Read Dr.Patrick Walsh book 'Guide to Surviving Prostate Cancer if nothing else. I quot no proven data on herbs but there is a fair amount out there. I did say Will it work, Time will tell. We do have a lot of trust in the Lord going on here. Thanks Nutt for your great letter we are really here to help and support each other. Breast cancer gals have 18,000+ posts so thought I would put a few opinions on here. Our diet is wonderful for the heart and blood sugar, must look at the bright side of everything. Linda
  • Benji48
    Benji48 Member Posts: 117
    lindatn said:

    Benji, Husband had his last 30 day shot on July 31 so not likely by the third week in Dec was it the Lupron. Please give me the article that says Saw Palmetto changes the reading of PSA, I hate to tell you but that is what Lupron does. His testosterome reading in Dec was normal for a man his age. I only thought the young man with the low psa and gleason maybe should look at one more thing before he rushed into anything. Read Dr.Patrick Walsh book 'Guide to Surviving Prostate Cancer if nothing else. I quot no proven data on herbs but there is a fair amount out there. I did say Will it work, Time will tell. We do have a lot of trust in the Lord going on here. Thanks Nutt for your great letter we are really here to help and support each other. Breast cancer gals have 18,000+ posts so thought I would put a few opinions on here. Our diet is wonderful for the heart and blood sugar, must look at the bright side of everything. Linda

    Hi Linda,
    As I said I don't wish to poo-poo or ridicule the herb therapies, I only wish to convey the thought that persons need to be careful. You don't have to "hate to tell me that that is what Lupron does", I know fully well that Lupron is NOT curative but only affects those cells which are testosterone dependent & not the others, and someday those on the therapy reach refractory, where it doesn't work.Anyway with that said here's a link to an article (one of many) about the masking effects of Saw Palmetto.
    I wish your husband well and success with his treatments.
    http://www.priory.com/med/saw.htm
    yours, Benji
  • edami
    edami Member Posts: 2
    Benji48 said:

    Hi Linda,
    As I said I don't wish to poo-poo or ridicule the herb therapies, I only wish to convey the thought that persons need to be careful. You don't have to "hate to tell me that that is what Lupron does", I know fully well that Lupron is NOT curative but only affects those cells which are testosterone dependent & not the others, and someday those on the therapy reach refractory, where it doesn't work.Anyway with that said here's a link to an article (one of many) about the masking effects of Saw Palmetto.
    I wish your husband well and success with his treatments.
    http://www.priory.com/med/saw.htm
    yours, Benji

    Benji,
    You are correct about saw palmetto, here is a question and answer my wife found in http://www.rcog.com/homeyahoo.htm.:
    Q53. How do hormones (Lupron, Zoladex, Casodex, Flutamide, PC-SPES) affect the PSA nadir test?
    A. Hormones ruin the PSA nadir test by artificially causing the PSA to become undetectable. Hormones do not cure prostate cancer. Men getting hormones plus radiation cannot determine whether or not they are being cured.

    Note: Hormones do not
  • nodawgs
    nodawgs Member Posts: 116
    lindatn said:

    Benji, Husband had his last 30 day shot on July 31 so not likely by the third week in Dec was it the Lupron. Please give me the article that says Saw Palmetto changes the reading of PSA, I hate to tell you but that is what Lupron does. His testosterome reading in Dec was normal for a man his age. I only thought the young man with the low psa and gleason maybe should look at one more thing before he rushed into anything. Read Dr.Patrick Walsh book 'Guide to Surviving Prostate Cancer if nothing else. I quot no proven data on herbs but there is a fair amount out there. I did say Will it work, Time will tell. We do have a lot of trust in the Lord going on here. Thanks Nutt for your great letter we are really here to help and support each other. Breast cancer gals have 18,000+ posts so thought I would put a few opinions on here. Our diet is wonderful for the heart and blood sugar, must look at the bright side of everything. Linda

    I'm a bachelor and a recently-turned, too-young-for-my-age 63. When it comes to dealing with cancer, I feel like I'm doing something wrong, but don't think so.

    I've been living every day like it was my last for most of my life, long before cancer ever reared its head. I thought cancer was stuff other folks got, certainly not me and Superman.

    On the thinking Superman and I were invulnerable to about anything but Krypton, I was negligent about checkups and had a far too-late diagnosis for prostate cancer. A screw-up like that on my part resulted in a helpful, but too-late cryoblation procedure. Only months later, danged if lung cancer didn't rear its head...a double whammy. The lung cancer was metastasized to adjacent lymph nodes and the brain. All that was fixed with neurosurgery to remove the brain metastasis, immediately followed by a lung resection to remove the primary tumor. That was done by removing the entire upper, left lobe of my lung and a six-pak of adjacent lymph nodes, two of which were cancerous. I had no post-op radiation or chemo...nuttin, zero, nada. Although the surgical procedures were as successful as it gets, I formed the opinion that neurosurgeons are lousy barbers and cardiothoracic surgeons have been watching too many magicians saw their assistants in half.

    I was sitting there on the couch one day bored with this completely unaccustomed, sitting-around mode while attached to this stupid machine pumping post-operative oxygen up my snoot. Hell with this. I turned the machine off and took a short walk....huffing and puffing with the upper half of a lung gone before I even made it to the end of the block. In days following, I did another, and another...eventually moving up to 1.7 miles on the park trails, then a run! Piece of cake, though lots of sweat. Although nearly falling on my face the first try, I built up to a daily, 1.7 mile run in only a few short months. Any reduced lung capacity is now hardly noticed. So much for this lung cancer business...back to my routine of living and enjoying the heck out of every moment possible!

    For the past, going on 3 years now, I've been monitored with CT scans and MRIs so frequently, I think I glow in the dark, yet there's still no sign of recurrence of the lung cancer. As far as I'm concerned, it's history. Life is good.

    Uh-oh...a prob. By the time I could get back on this prostate cancer business, my PSA had shot up to 142.2 with bone metastases spread to the right shoulder, neck, spine, a couple of ribs, and the pelvis. All of my treatment had been at M.D. Anderson-Houston...and here again...without radiation and/or androgen ablation. A simple anti-androgen treatment works by "blinding" the hormone receptors of prostate cancer cells to the presence of testosterone without the far drastic and aggressive treatment of total androgen ablation, aka testosterone cancellation. My PSA plunged from the previous 142.2 to 72.3 in a mere 16 days. It's now down to 11.0 as of Feb 5, 04 and graphs of PSA trends indicate my PSA is continuing downward...well, for now, anyway. I'll worry about any rise, later. My personal "do list" has me shooting for a negative numbered PSA although there is no such thing. I expect to reach a low-PSA plateau by around May 04. My "do list" also includes maintaining a low-PSA plateau for at least 2-3 years. All systemic pain is gone, I have no side effects worthy of mention, or so much as feel like I have any form of cancer at all. As to sexual side effect of prostate cancer, once you've determined that the nerve bundle is irreversibly nonfunctional, spring for one of the new, 3-piece, saline inflatable penile implants. All of that is done out-patient through a single, small incision, and is undetectable. As this magic, robo-member expands in both girth and length on demand, you're a new King Kong...with an unbelievably better attitude.

    I attribute a lot of success to my M.D. Anderson-Houston, research-based treatment protocol and intense monitoring, but give as much or more credit to my own "mental chemo", exercise, and nutritional supplements.

    My nutritional supplements include meeting a bunch of nice, but rowdy folks at Hooter's for Hot Wings washed down with a few cold beers. On other occasions, it might be a pre-dinner martini followed by a medium-rare porterhouse steak along with a couple of glasses of a good Merlot or Cabernet, a baked spud drenched in butter and smothered in sour cream/chives, all in the company of a long-legged, voluptuous female bud. Other supplements include baby back ribs, lobster and crab dinners, and being reasonable, always plenty of veggies.

    My exercise regimen consists of sitting in a hot spa with a bunch of nutty friends while sipping a Kahlua on the rocks and smoking a smooth, Macanudo ceegar while studying the buoyancy coefficients of mammary glands. Anaerobic exercise involves swinging a leg over a big, hot Harley every time the weather permits. More intense aerobics consists of frequent 1.7 mile fast-walks a few paces behind a bunch of ladies doing same while attempting to wear their spandex out from the inside. Other supplements consist of double doses of kids and grandkids, firing up the charcoal grill for group family gatherings while exceeding my digital camera's memory with lots of memorable pics of family and friends. I could go on and on, but you get the picture.

    The graveyards are of full of people that either won't or don't know how to get their attitude in gear. Consequently, they fall into a woe-is-me, self-imposed depression, and leave everything to divine intervention without lifting a finger in their own behalf. It wasn't meant to be that way, folks. As a species, our natural instinct for survival makes us pretty darn sturdy hominoids capable of overcoming many threats on our own.

    Having multiple types of unrelated cancer at the same time, I'm probably as close to the cancer picture as many. For instance, try this one on as a visual: sitting in a waiting room and seeing a cute little, bald-headed 6 or 7 year old girl wearing a sailor hat and hopping on the only leg she has to retreive a Winnie-the-Pooh book from the kiddie book shelf...all with a cute smile. Whew! I have grandkids that age, man! I don't care how tough you are, that'll make any dad or granddad get up and go look out the window to prevent folks from seeing a less than dry eye. Here's another: another waiting room and a kick-butt, gorgeous, young soccer mom probably in her early 30s being treated for ovarian cancer...sitting there holding a styrofoam head with a wig perched on it. Holy Cow! How about her kiddos?...her hubby?...her parents and in-laws? For some reason, I'm having a tough time feeling sorry for myself. When I cease to see those sights, I'll give credence to correctly focused divine intervention.

    For me, I'm back to doing the same as before...living like each day was my last.

    Best to you!

    Perry in Texas
  • lindatn
    lindatn Member Posts: 229
    edami said:

    Benji,
    You are correct about saw palmetto, here is a question and answer my wife found in http://www.rcog.com/homeyahoo.htm.:
    Q53. How do hormones (Lupron, Zoladex, Casodex, Flutamide, PC-SPES) affect the PSA nadir test?
    A. Hormones ruin the PSA nadir test by artificially causing the PSA to become undetectable. Hormones do not cure prostate cancer. Men getting hormones plus radiation cannot determine whether or not they are being cured.

    Note: Hormones do not

    Perhaps, maybe and might do not a fact make. It seems the European study implied saw palmetto didn't change the PSA reading. In this country there is no money to be made on herbs so Dr don't use them. Good Luck and prayers to all as we each walk a different path with this terrible condition called cancer. Maybe someday it will be cured but as long as it is such a wonderful money making condition I wonder? As one of my favorites on bc writes, Love, Light and Laughter. Linda
  • lindatn
    lindatn Member Posts: 229
    edami said:

    Benji,
    You are correct about saw palmetto, here is a question and answer my wife found in http://www.rcog.com/homeyahoo.htm.:
    Q53. How do hormones (Lupron, Zoladex, Casodex, Flutamide, PC-SPES) affect the PSA nadir test?
    A. Hormones ruin the PSA nadir test by artificially causing the PSA to become undetectable. Hormones do not cure prostate cancer. Men getting hormones plus radiation cannot determine whether or not they are being cured.

    Note: Hormones do not

    Perhaps, maybe and might do not a fact make. It seems the European study implied saw palmetto didn't change the PSA reading. In this country there is no money to be made on herbs so Dr don't use them. Good Luck and prayers to all as we each walk a different path with this terrible condition called canceer. Maybe someday it will be cured but as long as it is such a wonderful money making condition I wonder? As one of my favorites on bc writes, Love, Light and Laughter. Linda
  • nutt
    nutt Member Posts: 140
    nodawgs said:

    I'm a bachelor and a recently-turned, too-young-for-my-age 63. When it comes to dealing with cancer, I feel like I'm doing something wrong, but don't think so.

    I've been living every day like it was my last for most of my life, long before cancer ever reared its head. I thought cancer was stuff other folks got, certainly not me and Superman.

    On the thinking Superman and I were invulnerable to about anything but Krypton, I was negligent about checkups and had a far too-late diagnosis for prostate cancer. A screw-up like that on my part resulted in a helpful, but too-late cryoblation procedure. Only months later, danged if lung cancer didn't rear its head...a double whammy. The lung cancer was metastasized to adjacent lymph nodes and the brain. All that was fixed with neurosurgery to remove the brain metastasis, immediately followed by a lung resection to remove the primary tumor. That was done by removing the entire upper, left lobe of my lung and a six-pak of adjacent lymph nodes, two of which were cancerous. I had no post-op radiation or chemo...nuttin, zero, nada. Although the surgical procedures were as successful as it gets, I formed the opinion that neurosurgeons are lousy barbers and cardiothoracic surgeons have been watching too many magicians saw their assistants in half.

    I was sitting there on the couch one day bored with this completely unaccustomed, sitting-around mode while attached to this stupid machine pumping post-operative oxygen up my snoot. Hell with this. I turned the machine off and took a short walk....huffing and puffing with the upper half of a lung gone before I even made it to the end of the block. In days following, I did another, and another...eventually moving up to 1.7 miles on the park trails, then a run! Piece of cake, though lots of sweat. Although nearly falling on my face the first try, I built up to a daily, 1.7 mile run in only a few short months. Any reduced lung capacity is now hardly noticed. So much for this lung cancer business...back to my routine of living and enjoying the heck out of every moment possible!

    For the past, going on 3 years now, I've been monitored with CT scans and MRIs so frequently, I think I glow in the dark, yet there's still no sign of recurrence of the lung cancer. As far as I'm concerned, it's history. Life is good.

    Uh-oh...a prob. By the time I could get back on this prostate cancer business, my PSA had shot up to 142.2 with bone metastases spread to the right shoulder, neck, spine, a couple of ribs, and the pelvis. All of my treatment had been at M.D. Anderson-Houston...and here again...without radiation and/or androgen ablation. A simple anti-androgen treatment works by "blinding" the hormone receptors of prostate cancer cells to the presence of testosterone without the far drastic and aggressive treatment of total androgen ablation, aka testosterone cancellation. My PSA plunged from the previous 142.2 to 72.3 in a mere 16 days. It's now down to 11.0 as of Feb 5, 04 and graphs of PSA trends indicate my PSA is continuing downward...well, for now, anyway. I'll worry about any rise, later. My personal "do list" has me shooting for a negative numbered PSA although there is no such thing. I expect to reach a low-PSA plateau by around May 04. My "do list" also includes maintaining a low-PSA plateau for at least 2-3 years. All systemic pain is gone, I have no side effects worthy of mention, or so much as feel like I have any form of cancer at all. As to sexual side effect of prostate cancer, once you've determined that the nerve bundle is irreversibly nonfunctional, spring for one of the new, 3-piece, saline inflatable penile implants. All of that is done out-patient through a single, small incision, and is undetectable. As this magic, robo-member expands in both girth and length on demand, you're a new King Kong...with an unbelievably better attitude.

    I attribute a lot of success to my M.D. Anderson-Houston, research-based treatment protocol and intense monitoring, but give as much or more credit to my own "mental chemo", exercise, and nutritional supplements.

    My nutritional supplements include meeting a bunch of nice, but rowdy folks at Hooter's for Hot Wings washed down with a few cold beers. On other occasions, it might be a pre-dinner martini followed by a medium-rare porterhouse steak along with a couple of glasses of a good Merlot or Cabernet, a baked spud drenched in butter and smothered in sour cream/chives, all in the company of a long-legged, voluptuous female bud. Other supplements include baby back ribs, lobster and crab dinners, and being reasonable, always plenty of veggies.

    My exercise regimen consists of sitting in a hot spa with a bunch of nutty friends while sipping a Kahlua on the rocks and smoking a smooth, Macanudo ceegar while studying the buoyancy coefficients of mammary glands. Anaerobic exercise involves swinging a leg over a big, hot Harley every time the weather permits. More intense aerobics consists of frequent 1.7 mile fast-walks a few paces behind a bunch of ladies doing same while attempting to wear their spandex out from the inside. Other supplements consist of double doses of kids and grandkids, firing up the charcoal grill for group family gatherings while exceeding my digital camera's memory with lots of memorable pics of family and friends. I could go on and on, but you get the picture.

    The graveyards are of full of people that either won't or don't know how to get their attitude in gear. Consequently, they fall into a woe-is-me, self-imposed depression, and leave everything to divine intervention without lifting a finger in their own behalf. It wasn't meant to be that way, folks. As a species, our natural instinct for survival makes us pretty darn sturdy hominoids capable of overcoming many threats on our own.

    Having multiple types of unrelated cancer at the same time, I'm probably as close to the cancer picture as many. For instance, try this one on as a visual: sitting in a waiting room and seeing a cute little, bald-headed 6 or 7 year old girl wearing a sailor hat and hopping on the only leg she has to retreive a Winnie-the-Pooh book from the kiddie book shelf...all with a cute smile. Whew! I have grandkids that age, man! I don't care how tough you are, that'll make any dad or granddad get up and go look out the window to prevent folks from seeing a less than dry eye. Here's another: another waiting room and a kick-butt, gorgeous, young soccer mom probably in her early 30s being treated for ovarian cancer...sitting there holding a styrofoam head with a wig perched on it. Holy Cow! How about her kiddos?...her hubby?...her parents and in-laws? For some reason, I'm having a tough time feeling sorry for myself. When I cease to see those sights, I'll give credence to correctly focused divine intervention.

    For me, I'm back to doing the same as before...living like each day was my last.

    Best to you!

    Perry in Texas

    Perry,
    Your article wore me out just reading it.
    I will be "watchfully waiting" for your next installment. Enjoyed your enthusiam and zest for living life to its fullest.
    Joe
  • nodawgs
    nodawgs Member Posts: 116
    edami said:

    Benji,
    You are correct about saw palmetto, here is a question and answer my wife found in http://www.rcog.com/homeyahoo.htm.:
    Q53. How do hormones (Lupron, Zoladex, Casodex, Flutamide, PC-SPES) affect the PSA nadir test?
    A. Hormones ruin the PSA nadir test by artificially causing the PSA to become undetectable. Hormones do not cure prostate cancer. Men getting hormones plus radiation cannot determine whether or not they are being cured.

    Note: Hormones do not

    You referenced a Q&A numbered Q53 from http://www.rcog.com (Radiotherapy Clinics of Georgie aka RCOG). The originator of the Q53 answer you reference is grossly misinformed.

    For one, the drugs listed are combinations of antiandrogens as well as those used for total androgen ablation (apples and oranges).

    For example, Casodex is not a hormone at all, but is a drug that merely "blinds" hormone receptors of prostate cancerous cells to the presence of testosterone. Until prostate cancer cells mutate to an androgen independency (refractory) state, testosterone is required for cell replication. The "blinding" effect of Casodex dramatically slows cell replication (cancer progression) to a near halt over the course of several weeks/months. There is no reliable data on how long a patient can maintain a low-PSA plateau and virtual arrest of progression due to wide variances among patients. However, some have maintained it for a year, others for 2 years and beyond. Prostate cancer cell mutation during this period eventually causes replication to start up once again as now-mutated cancerous cells become hyper-responsive to minute levels of testerone seen through "holes" in the Casodex "blindfold."

    Although Casodex is a prostate cancer cell targeting drug that does not interfere with testosterone production, other drugs mentioned do, causing total androgen ablation to eliminate testosterone needed by prostate cancer cells for replication. Here again, after some period of time varying greatly from patient to patient, prostate cancer cells become androgen independent (refractory) and commence to replicate in the absence of testosterone. At this point, a patients may opt for androgen-independent salvage therapy involving yet another treatment protocol altogether.

    Bottom line:

    (1)The Radiotherapy Clinics of Georgia are a "for-profit" business. If the answer to Q53 was intentionally allowed to stand after review by responsible parties within their medical staff, there is an indication they are fraudulently promulgating false information for purposes of swaying patient treatment decisions in favor of their particular specialty.

    OR

    (2)They have their heads up their prostate.

    For additional information, I suggest patients reference M.D. Anderson's "Prostate Cancer Treatment Guidelines." These guidelines are rather complex flow diagrams for individualization of patient treatment for every conceivable level of aggressiveness and stage of the disease, including radiotherapy and numerous other options. At this time, there is no magic bullet by anyone. I might also add that the University of Texas M.D. Anderson Cancer Clinic is not only a non-profit instituion, but has for years been rated as the No. 1 cancer clinic in the nation by nationally recognized rating authorities as well as No. 1 in the world by the WHO (World Health Organization).

    "Perry"
    (a long-term, M.D. Anderson-Houston patient)
  • Benji48
    Benji48 Member Posts: 117
    nodawgs said:

    I'm a bachelor and a recently-turned, too-young-for-my-age 63. When it comes to dealing with cancer, I feel like I'm doing something wrong, but don't think so.

    I've been living every day like it was my last for most of my life, long before cancer ever reared its head. I thought cancer was stuff other folks got, certainly not me and Superman.

    On the thinking Superman and I were invulnerable to about anything but Krypton, I was negligent about checkups and had a far too-late diagnosis for prostate cancer. A screw-up like that on my part resulted in a helpful, but too-late cryoblation procedure. Only months later, danged if lung cancer didn't rear its head...a double whammy. The lung cancer was metastasized to adjacent lymph nodes and the brain. All that was fixed with neurosurgery to remove the brain metastasis, immediately followed by a lung resection to remove the primary tumor. That was done by removing the entire upper, left lobe of my lung and a six-pak of adjacent lymph nodes, two of which were cancerous. I had no post-op radiation or chemo...nuttin, zero, nada. Although the surgical procedures were as successful as it gets, I formed the opinion that neurosurgeons are lousy barbers and cardiothoracic surgeons have been watching too many magicians saw their assistants in half.

    I was sitting there on the couch one day bored with this completely unaccustomed, sitting-around mode while attached to this stupid machine pumping post-operative oxygen up my snoot. Hell with this. I turned the machine off and took a short walk....huffing and puffing with the upper half of a lung gone before I even made it to the end of the block. In days following, I did another, and another...eventually moving up to 1.7 miles on the park trails, then a run! Piece of cake, though lots of sweat. Although nearly falling on my face the first try, I built up to a daily, 1.7 mile run in only a few short months. Any reduced lung capacity is now hardly noticed. So much for this lung cancer business...back to my routine of living and enjoying the heck out of every moment possible!

    For the past, going on 3 years now, I've been monitored with CT scans and MRIs so frequently, I think I glow in the dark, yet there's still no sign of recurrence of the lung cancer. As far as I'm concerned, it's history. Life is good.

    Uh-oh...a prob. By the time I could get back on this prostate cancer business, my PSA had shot up to 142.2 with bone metastases spread to the right shoulder, neck, spine, a couple of ribs, and the pelvis. All of my treatment had been at M.D. Anderson-Houston...and here again...without radiation and/or androgen ablation. A simple anti-androgen treatment works by "blinding" the hormone receptors of prostate cancer cells to the presence of testosterone without the far drastic and aggressive treatment of total androgen ablation, aka testosterone cancellation. My PSA plunged from the previous 142.2 to 72.3 in a mere 16 days. It's now down to 11.0 as of Feb 5, 04 and graphs of PSA trends indicate my PSA is continuing downward...well, for now, anyway. I'll worry about any rise, later. My personal "do list" has me shooting for a negative numbered PSA although there is no such thing. I expect to reach a low-PSA plateau by around May 04. My "do list" also includes maintaining a low-PSA plateau for at least 2-3 years. All systemic pain is gone, I have no side effects worthy of mention, or so much as feel like I have any form of cancer at all. As to sexual side effect of prostate cancer, once you've determined that the nerve bundle is irreversibly nonfunctional, spring for one of the new, 3-piece, saline inflatable penile implants. All of that is done out-patient through a single, small incision, and is undetectable. As this magic, robo-member expands in both girth and length on demand, you're a new King Kong...with an unbelievably better attitude.

    I attribute a lot of success to my M.D. Anderson-Houston, research-based treatment protocol and intense monitoring, but give as much or more credit to my own "mental chemo", exercise, and nutritional supplements.

    My nutritional supplements include meeting a bunch of nice, but rowdy folks at Hooter's for Hot Wings washed down with a few cold beers. On other occasions, it might be a pre-dinner martini followed by a medium-rare porterhouse steak along with a couple of glasses of a good Merlot or Cabernet, a baked spud drenched in butter and smothered in sour cream/chives, all in the company of a long-legged, voluptuous female bud. Other supplements include baby back ribs, lobster and crab dinners, and being reasonable, always plenty of veggies.

    My exercise regimen consists of sitting in a hot spa with a bunch of nutty friends while sipping a Kahlua on the rocks and smoking a smooth, Macanudo ceegar while studying the buoyancy coefficients of mammary glands. Anaerobic exercise involves swinging a leg over a big, hot Harley every time the weather permits. More intense aerobics consists of frequent 1.7 mile fast-walks a few paces behind a bunch of ladies doing same while attempting to wear their spandex out from the inside. Other supplements consist of double doses of kids and grandkids, firing up the charcoal grill for group family gatherings while exceeding my digital camera's memory with lots of memorable pics of family and friends. I could go on and on, but you get the picture.

    The graveyards are of full of people that either won't or don't know how to get their attitude in gear. Consequently, they fall into a woe-is-me, self-imposed depression, and leave everything to divine intervention without lifting a finger in their own behalf. It wasn't meant to be that way, folks. As a species, our natural instinct for survival makes us pretty darn sturdy hominoids capable of overcoming many threats on our own.

    Having multiple types of unrelated cancer at the same time, I'm probably as close to the cancer picture as many. For instance, try this one on as a visual: sitting in a waiting room and seeing a cute little, bald-headed 6 or 7 year old girl wearing a sailor hat and hopping on the only leg she has to retreive a Winnie-the-Pooh book from the kiddie book shelf...all with a cute smile. Whew! I have grandkids that age, man! I don't care how tough you are, that'll make any dad or granddad get up and go look out the window to prevent folks from seeing a less than dry eye. Here's another: another waiting room and a kick-butt, gorgeous, young soccer mom probably in her early 30s being treated for ovarian cancer...sitting there holding a styrofoam head with a wig perched on it. Holy Cow! How about her kiddos?...her hubby?...her parents and in-laws? For some reason, I'm having a tough time feeling sorry for myself. When I cease to see those sights, I'll give credence to correctly focused divine intervention.

    For me, I'm back to doing the same as before...living like each day was my last.

    Best to you!

    Perry in Texas

    Amen brother!!!, Boy did this turn out to be a hot topic! They're gonna run out of colors pretty soon, heh,heh.I hope everyone reads your complete treatise & do not skim over it because you've got the right picture man.
    Benji
  • lindatn
    lindatn Member Posts: 229
    Perry, I think you are a great story writer but are you for real? This is fast becoming a long post and hopefully this time mine will only get posted once! Good week to all. Linda
  • nodawgs
    nodawgs Member Posts: 116
    lindatn said:

    Perry, I think you are a great story writer but are you for real? This is fast becoming a long post and hopefully this time mine will only get posted once! Good week to all. Linda

    Hon-bun, sometimes I wonder that myself. However, I'm still vertical and above ground, so I must be real. I'm now coming up on 3-years as a survivor of late stage, NSCLC (non-small cell lung cancer) metastasized to the lymph nodes and brain. Leaping that hurdle alone, represents a major exception to ACS's survivability statistics. Ever since then, I've been having to sit on my hands just to keep from hugging myself.

    I don't mean to take metastasized prostate cancer lightly. Heck no, I have that stuff as well, big time...with well-establish metastases to the bones all over the place. However, after going through 9-months of horrifically painful post-op recovery from cardiothoracic surgery, I was beginning to look at prostate cancer about like I would a poison ivy rash. What the deal is, the incision that wraps half-way around your body to gain access to the lung, severs large numbers of peripheral nerves. Those dudes think surgery is still in process for months after the surgery. After they yanked out the epidural, I took so many high-powered, addictive Vicodins, an X-ray of my stomach would have looked like a sack of black-eyed peas. Afterwards, I had to do a doc-assisted addiction withdrawal...and did it.

    As to my advanced prostate cancer, my current treatment regimen has the stuff in temporary suspension with a simple anti-androgen while avoiding androgen ablation...well, for now, anyway. With the individualized type of treatment I'm receiving, I have no symptoms worthy of mention and feel fantastic...like I have nothing at all. That's another reason worthy of daily celebration.

    If you need further proof and are in these parts, bring your leathers and drop by. We can ride 2-up, go have a few long-necks, and wrap a lip around a possum rib. If you aren't partial to Harleys, bring your clubs because the club entrance is only a couple of hundred yards from my front door.

    Here's to "real" (clink)

    "Perry"