REFUSAL OF TREATMENTS REASONABLE?
Ok, so here I am, a 58-yr-old survivor of a ruptured sub-arachnoid cerebral haemorrhage (brain aneurysm) 21 years ago, and worn down by the hellish after-effects of the open-skull surgery the docs used to "clip" that aneurysm. See my blog on that experience here: brain aneurysm.
Yes, I know I'm at a forum for PC, not brain surgery! Getting to that. First there is background you need to know. "I PLAN TO REFUSE ALL PC TREATMENTS":
- "DIAGNOSIS, PRE-EXISTING HEALTH ISSUES & MY BIOPSY": several months ago my doc did a full physical exam on me, including a PSA test. I scored 11, up from 4.2 six years ago (I ignored the 4.2, and so did my doc of that time). DRE found a "lump." I was referred for an ultrasound biopsy. The biopsy itself was virtually painless, and the blood in urine, stool, etc. happened exactly as the docs said it would. But my pre-existing severe case of Irritable Bowel Syndrome (IBS) has been noticeably aggravated since the biopsy. Most IBS sufferers complain of chronic constipation. Not me! MY lower GI tract roars like a Nascar! For many of my adult years I struggled with chronic diarrhea, which is socially embarassing, to say the very least! I experienced the ultimate social humilation numerous times: fecal incontinence - always in a public place,of course! Somehow, in recent years the diarrhea has stopped and become, instead, just regular, healthy BMs....but urgent, and non-stop (hard to believe, I know!). i've been keeping the makers of Imodium in business for decades, I hope they appreciate it. Seriously, I have to consume vast quantitites of Imodium daily, just to slow my GI tract down to a manageable pace. Still, my bowels are damned fussy and don't like to be fooled around with in ANY way.(Over the years I've been examined for every possible GI Tract pathology. Chron's, etc. Nope. Just plain IBS. Docs don't what causes it, and they have no treatment for it. They tell you "Just learn to live with it.") So...you can see it coming.....days after the biopsy my GI tract began revving up like a monster truck! I've had to nearly double my already-ourageous dose of Imodium. Even so, I've been living virtually chained to the WC! My life as a brain injury survivor had already made me mostly agoraphobic. Now, thanks to the biopsy, I've become almost completely shut-in. I can't be away from a toilet for more than a few minutes. You learn to plan any forays out of the house for speed and near the best public toilets. What a life! not.
- "THE WALKING DEAD":although the "clipping" surgery for my brain aneurysm nominally saved my life, I've felt like the Walking Dead ever since, for these last 21 years. Brain surgery is damn tricky, and the docs generally don't prepare patients for for their new-and-damaged post-op life: a life of endless medications, mentall illness, some physical infirmity, depression/anxiety syndrome, organic personality change, suicidal mentation, etc. etc. I could go on. I attempetd suicide once. (All the gory details are there on my blog. link above) My main point here is, life wasn't so great already. Now i'm facing PC. Life just got worse.
- "I LEARN ALL ABOUT PC": In the time between that PSA test and today, I've been researching like mad on the topic of PC. I've learned a lot: the imprecision of PSA testing; the sometimes harmful false positives arising from defective PSA screens leading to unnecessary, and sometimes harmful, biopsies; the risky PC treatments and their awful after-effects. Luckily I'm a Canadian, so the cost of health care is irrelevant to me. I'll get what I need without spending a penny. We have free universal health care here. [well, payroll-tax-funded -"feels" like free!] Canada has had universal health care since the 1960's...it's a Very Good Thing. (Why can't you Americans work that out, anyway, for Pete's sake? What's the problem!)
- "I HAVE SOME DECISIONS TO MAKE": given the adverse reaction I've already had after just Step One along the way to PC prognosis and treatment, and given that my life already is terribly disturbed, both mentally and physically,AND given the creepy possibilities for after-effects of PC treatment (impotence, incontinence, wasting, cancer pain), WHY on EARTH would I ever submit to the docs' radiation guns, robotic blades, chemical and hormonal tortures, when already they've got me chained to the WC and shut-in??? I want to have my dignity. I will NOT risk one more degree of aggravation of my IBS. I will NOT wear Depends until I die. I will NOT wear a colostomy bag. I will NOT be turned into a woman! I will NOT be impotent. I will accept palliative care.
- "I'VE WRITTEN A LETTER TO DADDY": I've written a Living Will, in which I stipulate that, should I become sick with PC and eventually unable to speak up for myself, I refuse all treatments. I will accept only palliative care.
Ya see, I'd rather be living perpetually stoned on morphine, or oxycontin, or (Hey, Ya!) medicinal marijuana but still able to move about in the world without profound embarassment. I could never tolerate the humilation of chronic incontinence, adult diapers, impotency - all known risks to "treatments" the docs have for PC. Hey man, I was a stoner in my younger years, I like drugs. Gimme drugs!
After what I've been through the last 21 years, the hideous psychic pain of brain surgery, I am NOT willing to be Their science experiment again. I've developed a healthy distrust of doctors. They too often promise the stars and deliver the moon.
I've had enough! NO MORE FOOLING WITH MY BODY! If I'm going to be sick with PC, I'll be sick on MY terms. Not theirs.
Can any of you men out there see logic in my not wanting any treatment? I know I sound pretty damn-well convinced of my own righteousness, but in fact I AM open to rational debate. I could change my mind, should I find reasons to do so.
Comments
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Treatments
I am only speaking for myself, you can do as you wish. Not sure if you researched what it is like to die from this disease, PCA, but it is not good. Death is coming for all of us. Who knows what it will be. You might be worrying about PCA and step in front of a bus. Life does not come with guarantees. You are born and then **** happens. You live or you die. Mother nature does not care how your life has been. Alot of bad things have happened to alot of people on this site. Not just PCA. Somehow alot of us are still alive. Cream rises to the top. Look around you and see how many of the people you knew are still here. I am 66 years old and all but one of my male friends are dead. I have had 3 special women in my life, not counting wife, they are still here. Not alot to show for this many years.
Depression is a ****. Sometimes you get in a cycle of depression and pity. Why me?
Why not find positive ways to help you get through this. Drugs are OK, but not for this. I found out years ago that drugs cause more problems than they solve. You have to determine your own future. No problem with buds, but pills should never be used for living. If you are taking them everyday you are hooked. You need to get help. You are not living life, you are just existing.
Sorry for not being upbeat, but you should seek counseling.
Mike
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" not being upbeat" - a GOOD THING!Samsungtech1 said:Treatments
I am only speaking for myself, you can do as you wish. Not sure if you researched what it is like to die from this disease, PCA, but it is not good. Death is coming for all of us. Who knows what it will be. You might be worrying about PCA and step in front of a bus. Life does not come with guarantees. You are born and then **** happens. You live or you die. Mother nature does not care how your life has been. Alot of bad things have happened to alot of people on this site. Not just PCA. Somehow alot of us are still alive. Cream rises to the top. Look around you and see how many of the people you knew are still here. I am 66 years old and all but one of my male friends are dead. I have had 3 special women in my life, not counting wife, they are still here. Not alot to show for this many years.
Depression is a ****. Sometimes you get in a cycle of depression and pity. Why me?
Why not find positive ways to help you get through this. Drugs are OK, but not for this. I found out years ago that drugs cause more problems than they solve. You have to determine your own future. No problem with buds, but pills should never be used for living. If you are taking them everyday you are hooked. You need to get help. You are not living life, you are just existing.
Sorry for not being upbeat, but you should seek counseling.
Mike
Hello Mike,
Please, you need not apologize for telling it like it is! " Not being upbeat" is a VERY GOOD THING! I congratulate you for it! Internet forums are often characterized by much "I hear your pain" and "Thanks for sharing" chatter that just does nobody any good.
Look, the career I lost when I had my brain aneurysm so many years ago was in the newspaper business. I was a politics reporter, and I was a star reporter. I had awards coming out my a**! A reporter gets to that level of professional recognition by digging up the dirt. Nobody cares about "nice" or "comforting" stories about politicians. It was my job to s**t-disturb. And S**T-DISTURB I did, big-time!
My personal and professional motto in life is captured in a lyrical passage I borrow from a fallen hero of mine. He wrote this verse: "All I want is the Truth. Just Gimme Some Truth."...John Lennon.
So far, so good, on this forum. I see Truth-tellers here. This is going to be a good resource for me, so THANKS, bud!
W.T.
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W. T.mimbyus said:" not being upbeat" - a GOOD THING!
Hello Mike,
Please, you need not apologize for telling it like it is! " Not being upbeat" is a VERY GOOD THING! I congratulate you for it! Internet forums are often characterized by much "I hear your pain" and "Thanks for sharing" chatter that just does nobody any good.
Look, the career I lost when I had my brain aneurysm so many years ago was in the newspaper business. I was a politics reporter, and I was a star reporter. I had awards coming out my a**! A reporter gets to that level of professional recognition by digging up the dirt. Nobody cares about "nice" or "comforting" stories about politicians. It was my job to s**t-disturb. And S**T-DISTURB I did, big-time!
My personal and professional motto in life is captured in a lyrical passage I borrow from a fallen hero of mine. He wrote this verse: "All I want is the Truth. Just Gimme Some Truth."...John Lennon.
So far, so good, on this forum. I see Truth-tellers here. This is going to be a good resource for me, so THANKS, bud!
W.T.
We all go through shock and all the negative feeings associated with depression when we are first diagnosed. This tends to go away after the first few months.
Additionally we are placed in an unenviable position where we, the patient has to make a choice of treatment from various treatments, all of which can have negative side effects.....however most men do pretty well and do not experience any long term side effects.
Many of the docs are selling their specialty to entice the patient to be treated by them, so one has to be educated so that they will not be taken advantage of , and have a strong patient/doctor relationship with their medical team.
Prostate cancer is not the same for all of us; some of us can have indolent cancer while others mildly aggressive involving some "active" treatment while others advanced cancer that requires a different type of treatment(s).
W.T. , at this point you have not been diagnosed. I suggest that you cross the bridge when you come to it. If, and if you are diagnosed, you will want to know what "best" treatments that are available for you, and the possible consequences, and then you can decide on what you want to do ....in my opinion your comments are about a worst case senereo, witrhout you being very knowledgeable about PCa is not appropriate at this time.
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I hear youmimbyus said:K..."Logic?"
Hello K,
Thank-you for that very informative reply to my post.
In particular, you shed light on the Great Mysterious Gleason Score. ( I wonder why so many writers on this subject fail to address a simple explanation of the thing? They all seem to assume the reader already knows how it works. Poor writing skills, there. )
Further, I do appreciate your compassionate approach to my quandry about refusing treatments. I do understand that much PC is treatable, and that many men get "cures." But in weeks of researching the subject - online, library, pamphlets, etc. etc - I've run across only ONE patient who claimed absolute perfection, with no unhappy after-effects from his " successful" treatment. Frankly, I doubt this fellow's honesty or understanding of his condition. i suspect he is experiencing a post-op delusional state also seen in brain injury patients who have "successful" brain surgery: they almost always go through a delusional stage, post-op, of believing that EVERYTHING IS BEAUTIFUL and they've been SAVED and returned to normal life. It's a delusion, always. Virtually every other PC case I've encountered, other than the fellow I've just mentioned, has involved post-treatment regrets because of unpleasant after-effects of "cures."
I sense that you - and don't feel bad, most other people misapprehend IBS in this same way - may not understand just how fundamentally life-wrecking severe IBS can be. Over the many years of my experience with IBS I've had numerous ambulance rides to Emerg, in desperate cramping pain; I've filled my drawers (!!) several times in public places when I was hit with sudden urgency to "go" and no toilet was nearby. THAT experience alone can make a person go home for good - never leave home again. The awful humilation! And hence my firm stand against ANY interference whatsoever with my Lower GI tract. I simply can't afford that. There's no room for risk on this. No percentage is acceptable, no "open-minded" acceptance can obtain here. I will have my dignity. Period.
IBS is one ugly B***H, and sadly the b***h is flys under the radar of most doctors and patients. That's because the docs haven't a clue WHAT it is, or HOW to treat it! (Docs hate "not knowing. It looks un-heroic on them.)
And so I hear what you have written, and I thank-you again for the time and energy you've given me. Thank-you!
But I wonder if I've clarified for you why there can be no open mindedness, in my case, toward PC treatments, any and all of which are bound to aggravate my IBS? If the docs are going to fool around in my pelvic area, they're going to disturb my lower GI Tract.
I can't have that. No discussion.
Have I convinced you?
W.T.
W.T.
I certainly haven't walked in your shoes, so to speak, with a condition as severe as the IBS you describe. I can only imagine the physical discomfort and mental anguish you must suffer with such a condition and I share your frustration that doctors have been unable to provide you any relief in this area. Certainly, given the physical location of the prostate in relation to your lower GI track there is a risk that many treatments for prostate cancer could further aggravate your condition.
In my own case, for example, I was diagnosed with a 3+3=6 Gleason score at the age of 59 in 2010. After considerable research and consulttions with a number of specialists in different fields, I elected to treat my cancer with stereotactic body radiation (SBRT), a highly accurate method of delivering a high dose of radiation entirely within the prostate that avoids harmful doses to surrounding organs such as the colon. I have had no side effects and all indications are that my cancer has completely been eliminated, at least for now. With radiation, as you probably know, there is some risk that even small radiation spillover dosages can cause irritation to the bowels. While this did not occur in my situation it does occur in a very small percentage of patients although it passes within a few weeks. Given your history with IBS I would certainly put this on the top of my list of things to discuss with doctors when (and if) the time comes that you need to discuss treatment options. Surgery may pose a lesser risk to the bowels but carries a higher risk of impotence and urinar incontinence. Everything has a tradeoff and nothing in the treatment of prostate cancer comes without paying some price.
I do agree with you that the individual quality of life of the patient is the most important aspect of choosing which treatment is appropriate. Some men feel an emotional need to "get the cancer out of them" or extend their life with a difficult treatment course if only for a few months. My own feelings are that none of us are getting out of here alive in any event and the manner in which we live and the quality of our days trumps how many Xs we can cross off on our life calendar. But these are personal choices and everyone has a different view.
I do hope your biopsy proceeds without incident and that you soon get answers that can help you make an informed decision.
K
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Treatment "Options"
I think the op raises a valid question about disease vs. "cure." Hopefully, in a few years the various cancer "treatments" now offered will be seen as outmoded barbaric procedures. Once you reach the Biblical three score, additional years may be a blessing or a curse. Hospice/palliative care is, with good reason, becoming an acceptable alternative to traditional medical care, which often focuses on the disease rather than on the patient.
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"focus on the disease rather than on the patient."jwoodie said:Treatment "Options"
I think the op raises a valid question about disease vs. "cure." Hopefully, in a few years the various cancer "treatments" now offered will be seen as outmoded barbaric procedures. Once you reach the Biblical three score, additional years may be a blessing or a curse. Hospice/palliative care is, with good reason, becoming an acceptable alternative to traditional medical care, which often focuses on the disease rather than on the patient.
hi jwoodie,
Hmmm....you've expressed more eloquently than I my own evolving thinking on this quandry, but - as WT points out in an earlier post, I'm coming from a relatively uninformed place and thinking from fear, not fact.
Still, it's a good point.
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I wish to take part in a discussion with you
There are times and circumstance when one should refuse treastment. How bad is your cancer and how fast is it growing? I don't see what your PSA reading is, your Gleason score, doubling time, etc.
I am no expert but I have been through a long history with prostate cancer and have done much reading and study. I have undergone some treatments and refused others. I do not choose to give advice, but I say go slow, study, think about it, involve family and friends, continue to enjoy life.
You sound like a very interesting person. Keep on trekking.
Jerry
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Old-timer said:
I wish to take part in a discussion with you
There are times and circumstance when one should refuse treastment. How bad is your cancer and how fast is it growing? I don't see what your PSA reading is, your Gleason score, doubling time, etc.
I am no expert but I have been through a long history with prostate cancer and have done much reading and study. I have undergone some treatments and refused others. I do not choose to give advice, but I say go slow, study, think about it, involve family and friends, continue to enjoy life.
You sound like a very interesting person. Keep on trekking.
Jerry
Hello jerry,
Thanks, I appreciate that. Nice to know I'm not just plain crazy to entertain certain doubts.
At the risk of sounding like an amatuer: my pathology report produced a Gleason score of "7". I believe there's supposed to be more to the score, as in a mathematical equation, but that's all the doc said when I asked for my score. I know he said the cancer was contained, and he wants to do a surgical removal of my prostate.
You can see my pathology report and follow another string of thoughts I began here: MY DIAGNOSIS DELIVERED.
I had to laugh: when discussing my results and possible treatment the doc said to me: "You're still a young man." HAH! Tell everybody ELSE, wiil you, Doc? I began to be offered Senior's discounts at stores five years ago!
Regards,
W.T.
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BRAIN SURGERY & PC
I READ YOUR COMMENTS AND CAN UNDERSTAND. WHEN I WAS 45 I LAPSED INTO A COMA AND WAS RUSHED TO THE HOSPITAL. THE CT REVEALED A CONGENITAL CYST ON THE 3RD VENTRICLE OF MY BRAIN, WHICH HAD GROWN AND WAS NOW BLOCKING THE TRANSFER OF SPINAL FLUID. I DEVELOPED SEVERE FLUID ON THE BRAIN. FORTUNATELY, I HAD A GREAT DR THAT DECIDED TO DO ENDOSCOPIC SURGERY. ALTHOUGH UNABLE TO REMOVE THE CYST ( NON MALIGNANT). HE WAS ABLE TO REMOVE THE FLUID AND ALLOW PROPER FLUID MOVEMENT - IT SAVED MY LIFE - THE DR CALLED ME HIS 'MIRACLE BABY'. ALTHOUGH THE SURGERY WAS A SUCCESS, IT LEFT ME WITH DEBILITATING BRAIN PAIN WHERE THEY 'TUNNELED THROUGH MY BRAIN' - LIKE AN AXE TO THE HEAD. I TRIED NUMEROUS RX - NOTHING WORKED AND HAD BAD SIDE EFFECTS. I RESEARCHED AND FOUND THAT MARINOL WAS USED SUCCESSFULLY FOR MIGRAINE PAIN. I FINALLY FOUND A DR THAT WOULD WRITE A RX TO TRY MARINOL. I NOW TAKE REGULARLY AND IT PREVENTS 80 -90% OF THE PAIN.THE MAIN INGREDIENT IS THC. SINCE THEN MY STATE HAS LEGALIZED MEDICAL MARIJUANA - I GOT MY CERTIFICATION AND CAN NOW USE - A FEW PUFFS HELP TO MINIMIZE THE PAIN - GREAT STUFF, PLUS IT ELEVATES MY MOOD. DUE TO THE EFFECTS OF THE SURGERY, I LOST A SIGNIFICANT PORTION OF MY MEMORY, BALANCE, ETC. I WENT TO REHAB FOR A YEAR TO LEARN TO WALK, REGAIN COGNITIVE SKILLS, ETC. I HAD TO FIND A NEW CAREER I COULD HANDLE.
THEN, WHEN I WAS 54, I WAS DIAGNOSED WITH PC - GLEASON 4 & 3 = 7. I THOUGHT BS , I'VE BEEN THROUGH ENOUGH ALREADY. I REALLY DIDN'T CARE ANYMORE. IF IT WERE JUST ME, MAYBE I WOULDN'T HAVE HAD ANY TREATMENT, HOWEVER I WAS GOING TO GET MARRIED AND MY MOM IS STILL AROUND, SO I DECIDED I HAD TO DO SOMETHING. I EXPLORED ALL OPTIONS AND TALKED WITH NUMEROUS DRS. AS A GUY, MY BIGGEST FEAR WAS SEXUAL SIDE EFFECTS. ON THAT BASIS, I RULED OUT SURGERY ( AN IMMEDIATE IMPACT ON FUNCTIONING ). THE RADIATION BEANS WERE NOT AN OPTION FOR MY CANCER. THE RADIATION RODS DO A LOT OF DAMAGE TO THE NERVES IN THE GENITAL AREA, SO I OPTED FOR VERY HI DOSE EXTERNAL BEAM RADIATION. I HAD 41 TREATMENTS. 5 YEARS LATER, MY PSA IS .01, HOWEVER THE LONG TERM EFFECTS OF THE RADIATION HAVE CAUSED A LOT OF GI TRACT PROBLEMS. I DEVELOPED CHRONIC RADIATION PROCTITIS AND OTHER GI TRACT PROBLEMS. AS A RESULT, I NOW HAVE CHRONES TYPE SYMPTOMS - I LIVE IN FEAR OF A FECAL OR URINARY ACCIDENT - I'VE HAD SOME - INCREDIBLE EMBARRASSMENT. IT'S LIKE AS SOON AS THERE IS ANY PRESSURE IN THE RECTAL AREA, I HAVE TO DASH TO THE BATHROOM. THERE IS ALSO THE BLEEDING. WITH ALL THE SIDE EFFECTS, IT RUINED MY CAREER - I'VE HAD TO TRY AND FIND VIRTUAL ( WORK FROM HOME ) PROJECTS - EVEN THEN, I'VE HAD TO CONDUCT PHONE TELECONFERENCES WHILE SITTING ON THE TOILET - NO ONE TOLD ME ABOUT THE GI TRACT SIDE EFFECTS - MY DRS. KEPT SAYING THE SIDE EFFECTS WOULD DISAPPEAR, INSTEAD THEY'VE GOTTEN WORSE. I CAN NO LONGER WORK AND HAVE NOW APPLIED FOR SS DISABILITY. THE URINARY TRACT BURN IS CONSTANT - HAVE NOT FOUND ANYTHING THAT HELPS - DRIVES ME UP THE WALL. I TALKED TO MY DRS ABOUT THE SEXUAL FUNCTIONING CONCERNS. PRIOR TO THE TREATMENTS, I BEGAN TAKING CIALIS TO KEEP THE NERVES STIMULATED TO MINIMIZE RADIATION DAMAGE - AN AMAZING RX - GREAT TO WAKE UP WITH MORNING WOOD - ALTHOUGH I MAY NOT STILL NEED IT, IT'S GREAT TO BE HARD LIKE WHEN YOU WERE 13, SO I STILL TAKE A VERY SMALL DOSE WEEKLY.
IT'S BEEN A VERY TOUGH ROAD. IF I HAD IT TO DO OVER, MAYBE I WOULDN'T HAVE HAD THE TREATMENT. THE STANDARD DR RESPONSE IS HEY IT'S BETTER THEN DYING OF CANCER - I RECENTLY ASKED MY GI DR IF HE COULD DO HIS JOB WITH ALL THE SIDE EFFECTS - HE SAID NO...........
EMOTIONALLY IT'S BEEN TOUGH. PC IS NOT A SUSAN G KOMEN EVENT... NO ONE CHEERS AND THROWS KISSES. PROFESSIONALLY IT'S A DARK SECRET.
ALL THE RECENT DISCUSSION REGARDING THE NEED FOR PC TREATMENT HAS MADE IT WORSE. I HATE TO THINK THAT MAYBE I WENT THROUGH ALL OF THIS FOR NOTHING - I ASKED MY DRS AND THEY SAID WITH MY GLEASON, AGE AND RAPID PSA DOUBLING TIME, I MADE THE RIGHT DECISION. maybe
CANCER IS VERY BIG BUSINESS ( JUST WATCH ALL THE TV ADS ). MY CANCER DRS LEFT MY HOSPITAL - THEY WANTED TO MAKE MORE $ AT A FOR PROFIT CANCER OPERATION - HOW MUCH IS ENOUGH ??? - THE HOSPITAL BILLED MORE THAN 200 K FOR MY RADIATION TREATMENTS....
OTIS
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Your Gleason score appears to be 3+4 = 7
That's not so high. Average or slightly less. With the 3 before the 4 is reported to be lower than 4 + 3. You should have plenty of time to assess your options. What is your PSA and how fast is it rising? Watchful waiting may be a viable option for you. Doctors (surgeons) make money when they provide treatments. True, it is their duty to prescribe but it remains our decision whether or not to take the medicine they recommend.
My Gleason score was the same as yours. I had a RP 23 years ago, radiation 8 years ago, and went on hormone therapy five years ago. I will turn 87 in August. My cancer is now in total remission, and I am in very good condition. No two cases are alike. Where would I be now if I had refused treatments? Nobody knows. Have I experienced side effects? You betcha. But life is wonderful, I enjoy the ride, I still wake up with a smile every morning, and I anticipate more thrills down the road.
Hope this is helpful to you.
Good luck.
Jerry
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OTIS4242 said:
BRAIN SURGERY & PC
I READ YOUR COMMENTS AND CAN UNDERSTAND. WHEN I WAS 45 I LAPSED INTO A COMA AND WAS RUSHED TO THE HOSPITAL. THE CT REVEALED A CONGENITAL CYST ON THE 3RD VENTRICLE OF MY BRAIN, WHICH HAD GROWN AND WAS NOW BLOCKING THE TRANSFER OF SPINAL FLUID. I DEVELOPED SEVERE FLUID ON THE BRAIN. FORTUNATELY, I HAD A GREAT DR THAT DECIDED TO DO ENDOSCOPIC SURGERY. ALTHOUGH UNABLE TO REMOVE THE CYST ( NON MALIGNANT). HE WAS ABLE TO REMOVE THE FLUID AND ALLOW PROPER FLUID MOVEMENT - IT SAVED MY LIFE - THE DR CALLED ME HIS 'MIRACLE BABY'. ALTHOUGH THE SURGERY WAS A SUCCESS, IT LEFT ME WITH DEBILITATING BRAIN PAIN WHERE THEY 'TUNNELED THROUGH MY BRAIN' - LIKE AN AXE TO THE HEAD. I TRIED NUMEROUS RX - NOTHING WORKED AND HAD BAD SIDE EFFECTS. I RESEARCHED AND FOUND THAT MARINOL WAS USED SUCCESSFULLY FOR MIGRAINE PAIN. I FINALLY FOUND A DR THAT WOULD WRITE A RX TO TRY MARINOL. I NOW TAKE REGULARLY AND IT PREVENTS 80 -90% OF THE PAIN.THE MAIN INGREDIENT IS THC. SINCE THEN MY STATE HAS LEGALIZED MEDICAL MARIJUANA - I GOT MY CERTIFICATION AND CAN NOW USE - A FEW PUFFS HELP TO MINIMIZE THE PAIN - GREAT STUFF, PLUS IT ELEVATES MY MOOD. DUE TO THE EFFECTS OF THE SURGERY, I LOST A SIGNIFICANT PORTION OF MY MEMORY, BALANCE, ETC. I WENT TO REHAB FOR A YEAR TO LEARN TO WALK, REGAIN COGNITIVE SKILLS, ETC. I HAD TO FIND A NEW CAREER I COULD HANDLE.
THEN, WHEN I WAS 54, I WAS DIAGNOSED WITH PC - GLEASON 4 & 3 = 7. I THOUGHT BS , I'VE BEEN THROUGH ENOUGH ALREADY. I REALLY DIDN'T CARE ANYMORE. IF IT WERE JUST ME, MAYBE I WOULDN'T HAVE HAD ANY TREATMENT, HOWEVER I WAS GOING TO GET MARRIED AND MY MOM IS STILL AROUND, SO I DECIDED I HAD TO DO SOMETHING. I EXPLORED ALL OPTIONS AND TALKED WITH NUMEROUS DRS. AS A GUY, MY BIGGEST FEAR WAS SEXUAL SIDE EFFECTS. ON THAT BASIS, I RULED OUT SURGERY ( AN IMMEDIATE IMPACT ON FUNCTIONING ). THE RADIATION BEANS WERE NOT AN OPTION FOR MY CANCER. THE RADIATION RODS DO A LOT OF DAMAGE TO THE NERVES IN THE GENITAL AREA, SO I OPTED FOR VERY HI DOSE EXTERNAL BEAM RADIATION. I HAD 41 TREATMENTS. 5 YEARS LATER, MY PSA IS .01, HOWEVER THE LONG TERM EFFECTS OF THE RADIATION HAVE CAUSED A LOT OF GI TRACT PROBLEMS. I DEVELOPED CHRONIC RADIATION PROCTITIS AND OTHER GI TRACT PROBLEMS. AS A RESULT, I NOW HAVE CHRONES TYPE SYMPTOMS - I LIVE IN FEAR OF A FECAL OR URINARY ACCIDENT - I'VE HAD SOME - INCREDIBLE EMBARRASSMENT. IT'S LIKE AS SOON AS THERE IS ANY PRESSURE IN THE RECTAL AREA, I HAVE TO DASH TO THE BATHROOM. THERE IS ALSO THE BLEEDING. WITH ALL THE SIDE EFFECTS, IT RUINED MY CAREER - I'VE HAD TO TRY AND FIND VIRTUAL ( WORK FROM HOME ) PROJECTS - EVEN THEN, I'VE HAD TO CONDUCT PHONE TELECONFERENCES WHILE SITTING ON THE TOILET - NO ONE TOLD ME ABOUT THE GI TRACT SIDE EFFECTS - MY DRS. KEPT SAYING THE SIDE EFFECTS WOULD DISAPPEAR, INSTEAD THEY'VE GOTTEN WORSE. I CAN NO LONGER WORK AND HAVE NOW APPLIED FOR SS DISABILITY. THE URINARY TRACT BURN IS CONSTANT - HAVE NOT FOUND ANYTHING THAT HELPS - DRIVES ME UP THE WALL. I TALKED TO MY DRS ABOUT THE SEXUAL FUNCTIONING CONCERNS. PRIOR TO THE TREATMENTS, I BEGAN TAKING CIALIS TO KEEP THE NERVES STIMULATED TO MINIMIZE RADIATION DAMAGE - AN AMAZING RX - GREAT TO WAKE UP WITH MORNING WOOD - ALTHOUGH I MAY NOT STILL NEED IT, IT'S GREAT TO BE HARD LIKE WHEN YOU WERE 13, SO I STILL TAKE A VERY SMALL DOSE WEEKLY.
IT'S BEEN A VERY TOUGH ROAD. IF I HAD IT TO DO OVER, MAYBE I WOULDN'T HAVE HAD THE TREATMENT. THE STANDARD DR RESPONSE IS HEY IT'S BETTER THEN DYING OF CANCER - I RECENTLY ASKED MY GI DR IF HE COULD DO HIS JOB WITH ALL THE SIDE EFFECTS - HE SAID NO...........
EMOTIONALLY IT'S BEEN TOUGH. PC IS NOT A SUSAN G KOMEN EVENT... NO ONE CHEERS AND THROWS KISSES. PROFESSIONALLY IT'S A DARK SECRET.
ALL THE RECENT DISCUSSION REGARDING THE NEED FOR PC TREATMENT HAS MADE IT WORSE. I HATE TO THINK THAT MAYBE I WENT THROUGH ALL OF THIS FOR NOTHING - I ASKED MY DRS AND THEY SAID WITH MY GLEASON, AGE AND RAPID PSA DOUBLING TIME, I MADE THE RIGHT DECISION. maybe
CANCER IS VERY BIG BUSINESS ( JUST WATCH ALL THE TV ADS ). MY CANCER DRS LEFT MY HOSPITAL - THEY WANTED TO MAKE MORE $ AT A FOR PROFIT CANCER OPERATION - HOW MUCH IS ENOUGH ??? - THE HOSPITAL BILLED MORE THAN 200 K FOR MY RADIATION TREATMENTS....
OTIS
Hi OTIS,
J.H.Krist! You've had a tough time, my friend. As if BI isn't enough to wreck quality of Life, then PCa comes along! I followed your story, understanding all of it. One main difference between your and my brain injury suffering is that, for some unknown reason, I've never experienced post-op headaches or other head pain, as you have. I count my lucky stars on that account, because I know that your experience is by far the more common experience.
I'm considering NO TREATMENT as a serious option, because of fears of severe post-op bowel damage, based on my pre-existing severe IBS condition.
In the NO TREATMENT scenario, I'll just sit back and wait to die, and I've imagined that I'd likely end up asking my doc for medicinal marijuana too. I smoked me a lot of dope in my youth, and pure THC in particular was one major Happy-Maker! I sure am glad it works for you! And the Cialis too. Good!
I get a lot of resistance to the following statement (which I say constantly): "DRUGS ARE OUR FRIENDS!" I DO believe that, seriously. Once upon a time it was just a funny jokey thing to say. But as I've endured BI, and IBS in my adult life, I've been absolutely dependant on a host of meds. Without them, I'd be dead! Certain zealots take extreme exception to our appreciation of pain/mood-relieving drugs. They're the losers in THIS game!
From where I stand right now with this new horror grabbing me by the balls (!!), I am considering NO TREATMENT, even Self Extinction. Life was meant to LIVE, not to SUFFER, is what I say.
PCa may just have tipped the scales for me, from Living to Suffering. I'm asking myself some serious questions in this regard. I'm not a religious man, so have no shackles of suprestition about Life/Death holding me down.
Well, my friend, I wish you Peace. And relief.
Thanks for writing. Rock on!
W.T.
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Old-timer said:
Your Gleason score appears to be 3+4 = 7
That's not so high. Average or slightly less. With the 3 before the 4 is reported to be lower than 4 + 3. You should have plenty of time to assess your options. What is your PSA and how fast is it rising? Watchful waiting may be a viable option for you. Doctors (surgeons) make money when they provide treatments. True, it is their duty to prescribe but it remains our decision whether or not to take the medicine they recommend.
My Gleason score was the same as yours. I had a RP 23 years ago, radiation 8 years ago, and went on hormone therapy five years ago. I will turn 87 in August. My cancer is now in total remission, and I am in very good condition. No two cases are alike. Where would I be now if I had refused treatments? Nobody knows. Have I experienced side effects? You betcha. But life is wonderful, I enjoy the ride, I still wake up with a smile every morning, and I anticipate more thrills down the road.
Hope this is helpful to you.
Good luck.
Jerry
Hi again Jerry,
My PSA reading now is 11. Up over six years from 4.2
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That does not seem to be scary
PSA of 11 indicates that treatment may be warranted. But to go from 4.2 to 11 in six years is far from doubling in a year. My urologist wanted to begin hormone therapy when my PSA reached 10. I talked him into waiting until it reached 20.4. That worked OK. Remember, every case is different. I am suggesting that, based on my experience, it is probably OK for you to wait long enough to get a second opinion, then study, think, and decide.
Continuing to wish for the best for you.
Jerry
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TREATMENTOld-timer said:That does not seem to be scary
PSA of 11 indicates that treatment may be warranted. But to go from 4.2 to 11 in six years is far from doubling in a year. My urologist wanted to begin hormone therapy when my PSA reached 10. I talked him into waiting until it reached 20.4. That worked OK. Remember, every case is different. I am suggesting that, based on my experience, it is probably OK for you to wait long enough to get a second opinion, then study, think, and decide.
Continuing to wish for the best for you.
Jerry
GOOD EVENING MY FRIENDS. THANKS FOR THE FEEDBACK WT AND WORDS OF ENCOURAGEMENT JERRY.
MY PSA HAD DOUBLED FROM 2.7 TO 5.4 IN 4 MONTHS.
I AM IMPRESSED WITH YOUR BACKGROUND WT - HOW COOL - HOW ARE YOU USING YOUR TALENTS NOW? I TOO HAVE IBS AMONG OTHER GI TRACT PROBLEMS ( I HAVE HAD TO WORK VIRTUALLY ). WITH YOUR COMMUNICATION SKILLS, YOU COULD BE A GREAT VOICE ( I JUST HEARD ANOTHER DAMN ANNOYING AD FOR CANCER TREATMENT AT A LOCAL HOSPITAL - MY HOSPITAL - AN OMINOUS VOICE SAYS - THE ONLY THING WORSE THEN FINDING OUT YOU HAVE CANCER IS FINDING OUT TOO LATE - I LOVE SCARE TACTICS - SOMETIMES I FEEL LIKE A PIECE OF MEAT IN THE BIG, BIG BUSINESS OF CANCER ).
I AGREE WITH JERRY. WE CAN'T CONTROL OUR DESTINY, SO WE NEED TO FOCUS ON OUR PASSIONS IN LIFE - THAT WHICH MAKES US HAPPY. ALTHOUGH I'M DEALING WITH A LOT OF SIDE EFFECTS, I STILL LOOK FORWARD TO WATCHING SUNSETS OVER LAKE MICHIGN, THE OUTDOORS, BIKING / HIKING, GREAT TUNES, MAYBE EVEN HAVING A WINNING FOOTBALL TEAM THIS YEAR..........
IT IS AMAZING AND SOMEWHAT HYPOCRITICAL THE ATTITUDE TOWARD MED MARY JANE. MARINOL, ARTIFICIAL THC, IS PERFECTLY LEGAL AND VERY EXPENSIVE, EVEN THE GENERIC. IT WAS DEVELOPED IN THE 80'S AS A SUBSTITUTE FOR WEED - EVEN THEN, THEY KNEW THE MEDICINAL QUALITIES OF THC. HOWEVER, MARINOL DOES NOT CONTAIN ALL OF THE COMPONENTS IN NATURAL WEED, AND IS NOT NEARLY AS EFFECTIVE. IF THE BIG PHARMA COMPANIES OWNED THE RIGHTS TO MED MARIJ. I'M SURE WE WOULD BE SEEING NON STOP COMMERCIALS FOR IT ( FOLLOW THE MONEY MY FRIEND ). IT CERTAINLY IMPROVES MY OUTLOOK.
ONE OF MY FAVORITE SONGS I THINK WE CAN ALL RELATE TO: TRUCKING BY THE GRATEFUL DEAD - " WHAT A LONG STRANGE TRIP IT'S BEEN "
PS - DOES THIS THING HAVE SPELL CK ???? UNFORTUNATELY, I'VE BECOME DEPENDENT...........
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6 yrs of )OTIS4242 said:BRAIN SURGERY & PC
I READ YOUR COMMENTS AND CAN UNDERSTAND. WHEN I WAS 45 I LAPSED INTO A COMA AND WAS RUSHED TO THE HOSPITAL. THE CT REVEALED A CONGENITAL CYST ON THE 3RD VENTRICLE OF MY BRAIN, WHICH HAD GROWN AND WAS NOW BLOCKING THE TRANSFER OF SPINAL FLUID. I DEVELOPED SEVERE FLUID ON THE BRAIN. FORTUNATELY, I HAD A GREAT DR THAT DECIDED TO DO ENDOSCOPIC SURGERY. ALTHOUGH UNABLE TO REMOVE THE CYST ( NON MALIGNANT). HE WAS ABLE TO REMOVE THE FLUID AND ALLOW PROPER FLUID MOVEMENT - IT SAVED MY LIFE - THE DR CALLED ME HIS 'MIRACLE BABY'. ALTHOUGH THE SURGERY WAS A SUCCESS, IT LEFT ME WITH DEBILITATING BRAIN PAIN WHERE THEY 'TUNNELED THROUGH MY BRAIN' - LIKE AN AXE TO THE HEAD. I TRIED NUMEROUS RX - NOTHING WORKED AND HAD BAD SIDE EFFECTS. I RESEARCHED AND FOUND THAT MARINOL WAS USED SUCCESSFULLY FOR MIGRAINE PAIN. I FINALLY FOUND A DR THAT WOULD WRITE A RX TO TRY MARINOL. I NOW TAKE REGULARLY AND IT PREVENTS 80 -90% OF THE PAIN.THE MAIN INGREDIENT IS THC. SINCE THEN MY STATE HAS LEGALIZED MEDICAL MARIJUANA - I GOT MY CERTIFICATION AND CAN NOW USE - A FEW PUFFS HELP TO MINIMIZE THE PAIN - GREAT STUFF, PLUS IT ELEVATES MY MOOD. DUE TO THE EFFECTS OF THE SURGERY, I LOST A SIGNIFICANT PORTION OF MY MEMORY, BALANCE, ETC. I WENT TO REHAB FOR A YEAR TO LEARN TO WALK, REGAIN COGNITIVE SKILLS, ETC. I HAD TO FIND A NEW CAREER I COULD HANDLE.
THEN, WHEN I WAS 54, I WAS DIAGNOSED WITH PC - GLEASON 4 & 3 = 7. I THOUGHT BS , I'VE BEEN THROUGH ENOUGH ALREADY. I REALLY DIDN'T CARE ANYMORE. IF IT WERE JUST ME, MAYBE I WOULDN'T HAVE HAD ANY TREATMENT, HOWEVER I WAS GOING TO GET MARRIED AND MY MOM IS STILL AROUND, SO I DECIDED I HAD TO DO SOMETHING. I EXPLORED ALL OPTIONS AND TALKED WITH NUMEROUS DRS. AS A GUY, MY BIGGEST FEAR WAS SEXUAL SIDE EFFECTS. ON THAT BASIS, I RULED OUT SURGERY ( AN IMMEDIATE IMPACT ON FUNCTIONING ). THE RADIATION BEANS WERE NOT AN OPTION FOR MY CANCER. THE RADIATION RODS DO A LOT OF DAMAGE TO THE NERVES IN THE GENITAL AREA, SO I OPTED FOR VERY HI DOSE EXTERNAL BEAM RADIATION. I HAD 41 TREATMENTS. 5 YEARS LATER, MY PSA IS .01, HOWEVER THE LONG TERM EFFECTS OF THE RADIATION HAVE CAUSED A LOT OF GI TRACT PROBLEMS. I DEVELOPED CHRONIC RADIATION PROCTITIS AND OTHER GI TRACT PROBLEMS. AS A RESULT, I NOW HAVE CHRONES TYPE SYMPTOMS - I LIVE IN FEAR OF A FECAL OR URINARY ACCIDENT - I'VE HAD SOME - INCREDIBLE EMBARRASSMENT. IT'S LIKE AS SOON AS THERE IS ANY PRESSURE IN THE RECTAL AREA, I HAVE TO DASH TO THE BATHROOM. THERE IS ALSO THE BLEEDING. WITH ALL THE SIDE EFFECTS, IT RUINED MY CAREER - I'VE HAD TO TRY AND FIND VIRTUAL ( WORK FROM HOME ) PROJECTS - EVEN THEN, I'VE HAD TO CONDUCT PHONE TELECONFERENCES WHILE SITTING ON THE TOILET - NO ONE TOLD ME ABOUT THE GI TRACT SIDE EFFECTS - MY DRS. KEPT SAYING THE SIDE EFFECTS WOULD DISAPPEAR, INSTEAD THEY'VE GOTTEN WORSE. I CAN NO LONGER WORK AND HAVE NOW APPLIED FOR SS DISABILITY. THE URINARY TRACT BURN IS CONSTANT - HAVE NOT FOUND ANYTHING THAT HELPS - DRIVES ME UP THE WALL. I TALKED TO MY DRS ABOUT THE SEXUAL FUNCTIONING CONCERNS. PRIOR TO THE TREATMENTS, I BEGAN TAKING CIALIS TO KEEP THE NERVES STIMULATED TO MINIMIZE RADIATION DAMAGE - AN AMAZING RX - GREAT TO WAKE UP WITH MORNING WOOD - ALTHOUGH I MAY NOT STILL NEED IT, IT'S GREAT TO BE HARD LIKE WHEN YOU WERE 13, SO I STILL TAKE A VERY SMALL DOSE WEEKLY.
IT'S BEEN A VERY TOUGH ROAD. IF I HAD IT TO DO OVER, MAYBE I WOULDN'T HAVE HAD THE TREATMENT. THE STANDARD DR RESPONSE IS HEY IT'S BETTER THEN DYING OF CANCER - I RECENTLY ASKED MY GI DR IF HE COULD DO HIS JOB WITH ALL THE SIDE EFFECTS - HE SAID NO...........
EMOTIONALLY IT'S BEEN TOUGH. PC IS NOT A SUSAN G KOMEN EVENT... NO ONE CHEERS AND THROWS KISSES. PROFESSIONALLY IT'S A DARK SECRET.
ALL THE RECENT DISCUSSION REGARDING THE NEED FOR PC TREATMENT HAS MADE IT WORSE. I HATE TO THINK THAT MAYBE I WENT THROUGH ALL OF THIS FOR NOTHING - I ASKED MY DRS AND THEY SAID WITH MY GLEASON, AGE AND RAPID PSA DOUBLING TIME, I MADE THE RIGHT DECISION. maybe
CANCER IS VERY BIG BUSINESS ( JUST WATCH ALL THE TV ADS ). MY CANCER DRS LEFT MY HOSPITAL - THEY WANTED TO MAKE MORE $ AT A FOR PROFIT CANCER OPERATION - HOW MUCH IS ENOUGH ??? - THE HOSPITAL BILLED MORE THAN 200 K FOR MY RADIATION TREATMENTS....
OTIS
I had the robotic surgery and it worked at least so far, I just celebrated 6 years clean. I'm impotent and have minor leakege. I do every thing I want my PSA is less than .o1 (labs won't report 0 it's a cya thing).
My view was get the darn thing out. I have had no lower GI issues using the DaVinci. There can always be exceptions but it's really good. Search for the bes oncologist, surgeon or what ever. Please keep posting progress so we can all help, pray or what ever you need, we're here. jj
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