WATCHFUL WAITING

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  • nodawgs
    nodawgs Member Posts: 116
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    This is for all of you "watchful waiting" guys. Sorry for my typical long-windedness, but this may be some handy, outlook-boosting poop you're anxious to hear.

    Although I've already been through cryoablation, I consider myself in a second period of "watchful waiting" in that the disease is temporarily "suspended" with a drug that targets and blinds hormone receptors of prostate cancer cells to the presence of the testosterone needed for prostate cancer cell replication. Testosterone production is unaffected. In other words, the gearshift has been shoved up into "neutral," though the motor is still running until it runs out of gas...watchful waiting.

    The only gold-standard "cure" for prostate cancer at this time is a radical prostatectomy at the earliest detectable stage of the disease while it's totally confined to the prostate capsule. Of course, a low Gleason score (measure of aggressiveness) is darn sure helpful. Even then, there is a 30% rate of recurrence, but that also means a 70% cure rate...again, only if caught at the earliest detectable stage.

    Unfortunately, many men won't or don't act soon enough for an early diagnosis, much less get excited about having the earliest possible radical prostatectomy and the associated quality-of-life altering side effects. On the other side of the coin, if the disease is caught in its earliest stages, there is a far better chance a patient may be a candidate for a nerve-sparing procedure or nerve-grafting. If the prostate cancer is too far advanced, a nerve-sparing or nerve-grafting procedure may be out of the question because the remaining, spared nerve tissue or nerve-grafted tissue could provide a propagation path for further spread to metastatic sites beyond the prostate. Of course, very few have the capability to perform nerve sparing and nerve grafting integral to a radical prostatectomy surgical procedure. Even then, these are extremely delicate procedures performed that don't come with a guarantee, but are having higher success rates than ever.

    Speaking of quality-of-life altering side-effects, there are all kinds of counseling available on solving problems with erectile dysfunction. However, for reasons I'll never figure out, most of these self-annointed counselors are estrogenated women having no clue how the testosterone-driven mind works at onset. I mean no offense, but until someone stiches up their vagina and gives them a massive dose of an aphrodesiac, they never will truly relate. The psychological and neurologically-driven orientations between genders are night and day different. In my opinion, all of the erectile dysfunction solutions more popularly offered suck...totally suck, and are far from a spontaneous norm. As far as I'm concerned, the only real-world solution is one of the new, saline-inflatable penile implants. Do a web-search, you'll find them...then go to the page featuring what I call a "Gorilla version or high-performance, sports version" that expands in both length and girth. I'll put it this way: you'll be swapping your old jockeys for 34DD underwear with underwire support...I guess what Victoria's Secret would call "Miracle Shorts." Currently, they are experiencing a 14-year reliability before having to replace a failed part, which usually winds up being the concealed pump...no major biggie. Anyway, until you make a bold decision on that subject, hang in there...pun intended.

    There are other reasons to boost your thinking on prostate cancer. In cancer circles, you hear the word "hope" a lot. I hate that friggin word. It sounds too "iffy." I need something more definitive and concrete. In that pursuit, I can say that a more active stance to prostate cancer-focused research has been going on for only the last 10 short years. I conjecture that other forms of highly lethal cancer affecting much younger age groups resulted in putting middle-age to older males on the back burner. That is now no longer true and prostate cancer microbiological research is at an unprecedented high. Development of a "magic bullet" might come in the form of (1) being able to simply manage the disease to the point patients are provided an acceptable quality of long life, winding up dying with it, rather than dying from it or (2) a true-blue cure by developing drugs having the ability to target prostate cancer cells to induce apoptosis (normal cell life-cycles involving triggered, self-destruction). Research is now so active that someone being diagnosed with early-stage prostate cancer today, could very likely have their entire treatment protocol hit a new fork in the road due to development of new treatments since their original diagnosis. Of course, I'm in reference to research-based treatment protocols as opposed to treatment by cancer clinics using follow-the-leader methods or samo, samo, yesteryear treatments. As cancer is a profitable enterprise, it seems like cancer clinics have sprung up like gasoline service stations...one on every corner. Other enterprises are making their bucks by hawking magic pills and weird herbs from some remote corner of the planet.

    I'll never be one that's into herbal or snake oil solutions. Obviously, if any of that stuff worked, it'd be in the forefront of treatment in pill or injectionable form...of course, with a pharmaceutically modified price tag. The big pharmaceuticals will go after anything for which there's a market, presuming it provingly works. Think about that. As to something more scientific and research-based, there are currently large-scale trials going on in major cancer research clinics involving nutritional supplements found in ordinary everyday foods that appear to be of preventative value. Do a search on ACS's site. You'll find it. However, once you have this stuff, you're probably spinning your wheels by gobbling supplements like M&Ms. If you are, inform your doc immediately.

    As to lab, research-based, potential solutions, here's one on the horizon that will knock your socks off...yet, it's an existing drug used for an entirely different purpose:

    http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Bone_Density_Drug_May_Fight_Prostate_Cancer.asp

    Pretty shocking, huh? Yeah...and that comes from the most respected and reliable source of cancer info there is: ACS. Like many other studies in the past, I also downloaded the detailed lab studies and reports on Raloxifene from the NCI (National Cancer Institute). Of course, one has to understand that cancer has already been "cured" a zillion times in lab dishes and sometimes in animals, only to find it doesn't do squat in a human model. This may be one such case, but animal studies are now underway, and until human trials are performed, no one knows.

    The only prob I found with the study above is that 1000X the dosage found in a Raloxifene tablet was required to induce targeted apoptosis (cell death) in prostate cancer cells. For all I know, peanut butter would do the same at that level of concentration. The study's last paragraphs contained a caveat candidly posing the question on how to obtain a level in human blood serum equal to 1000x the dosage of Raloxifene...which they had no answer at the time. I suggested to my onco, I could take a several 100 tablets orally, another 100 or so as a mega-suppository, grind some up and smoke it, while sticking the rest up my nose.

    The bottom line is, this "watchful waiting" could be a dynamic period because it is also a time when new diagnostic research, microbiology research in labs, and treatment technologies are being improved, all on the move faster than ever.

    The key thing is, instead of "hoping" for tomorrow, make today a good one! I had advanced prostate cancer long before my diagnosis in late 2000 amd before being biopsied in early 2001...and am doing great!

    Good Luck!

    "Perry"
  • cooleydd
    cooleydd Member Posts: 7
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    With a PSA of 0.4 and a positive diagnosis you need to have your Gleason read by an expert - see Gleason Grading - Understanding Gleason Grading System for Prostate Cancer" at http://www.prostate-help.org/caglegr.htm and "Gleason Experts" at http://www.prostate-help.org/cagleas.htm. We see in young men a very aggressive, high Gleason cancer that throws out very low PSA. If you have a high Gleason you will wnat to be in a hurry.

    You can find some answers at my websites - go to the Gateway to start your research at http://www.prostate-help.net. Yuo may want to join some of the discussion groups at "Prostate-Help PHCa Cancer Groups" at http://www.phcagroups.org or join the Chats. It all starts at the Gateway.
  • positive4U
    positive4U Member Posts: 2
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    I WAS 45 WITH A PSA OF 4.6 & GLEASON 6. BIOPSY SHOWED ONLY 1 CORE SAMPLE WITH LESS THAN 5% CANCER OUT OF 6 CORE SAMPLES. THE YOUNGER THE PATIENT THE MORE AGGRESSIVE THE CANCER CAN BE, SO I OPTED FOR SURGERY. AND YES SEX IS VERY IMPORTANT TO ME TOO! EVEN THOUGH DRE WAS NORMAL, THEY FOUND 3 TUMORS IN ALL-ONE OF WHICH WAS 1/2 INCH IN SIZE & VERY NEAR THE TOP OF THE PROSTATE WITH THE POSSIBILITY OF BREAKING THRU IN A FEW YEARS. THIS TUMOR WAS MISSED WITH TRUS, DRE & BIOPSY & COULD HAVE KILLED ME. I HAD BILATERAL NERVE-SPARING SURGERY & ALMOST 2 YEARS LATER HAVE RECOVERED SEXUAL FUNCTIONING ALTHOUGH IT IS DIFFERENT. REMEMBER THAT USUALLY THE YOUNGER THE SURGERY IS DONE, THE BETTER THE OUTCOME. HOPE THIS HELPS.
  • rhchristensen
    rhchristensen Member Posts: 2
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    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, I love your attitude! Its positive and that's what it takes.

    Everyday is a bonus!

    God bless, Bob