REFUSAL OF TREATMENTS REASONABLE?

Mimbyus,

First of all, welcome to the forum and I'm sorry that you are perhaps facing a PCa diagnosis.  While the lump you described and the rising PSA suggest that a prostaste cancer diagnosis is likely, only the results of a biopsy can definitely determine whether or not you have cancer.  Even a negative biopsy cannot guarantee that you do not have cancer, it only means that in the small areas of the prostate where they took samples that cancer wasn't found.  Typically a biopsy samples less than 1 percent of total prostate volume.  You will know more when you get your biopsy results tomorrow.

To address the question you posed in another posting, a Gleason score is the convention used to rate a positive cancer core in a biopsy.  The Gleason score is the combination of two seperate subjective evaluatons, the first being the rating of the most prevelant type of cancer present and the second score is the next most prevelant cancer present.  The scale, as I mentioned, is a subjective evaluation by the pathologies reviewing your sample as to the degree of differentiation of the cancer cells.  In the early stages, prostaste cancer cells look much like normal prostate gland cells.  As the cancer becomes more advanced the cells become more and more ill defined.  Scores for a positive cancer diagnosis typically range from a 3+3=6 (a low risk cancer) to a 5+5=10 (very high risk) diagnosis.  Scores of 6 and below are low risk.  A 7 (3+4 or 4+3) are considered intermediate risk.  Gleason scores of 8 or higher are considered high risk.

Now regarding your stated intentions to refuse any treatment.  One in six men in the USA will be diagnosed with prostsate cancer in their lifetime.  Fortunately, prostsate cancer when caught early is very highly treatable through a variety of methods thay typically involve either the surgical removal of the prostate or some form of radiation treatment.  Some men, depending on the stage of their cancer, may also take hormone therapy drugs that act to remove testosterone production.  Testosterone is needed for prostate cancer to grow.  While not curative, hormone therapy can delay the advancement of prostate cancer for several years.  In many cases of low risk cancer (Gleason scores <= 6) patients can safely elect to take no curative treatment but instead actively monitor their condition and only take actions if the cancer progresses.  Many early detected prostate cancers are indolent and will never pose a risk to the patient.

While all treatments carry some risk of side effects, and some treatments carry more risk than others, prostate cancer is very treatable and the methods used are not experimental.  While each cancer is unique the vast majority of men who are diagnosed early and seek treatment will end up expiring of something other than prostate cancer.  Indeed, the most common cause of death for men diagnosed with prostate cancer is heart disease.  While 1 in 6 are diagnosed with PCa, only about 1 in 32 men actually die from prostate cancer.

I applaud you for researching prostate cancer.  Frequently the experts have divided opinions about the proper course of treatment and in Canada and other Western nations men have choices about the treatment options they can choose from.

While I empathize with your past experience with the medical community, I would encourage you to keep an open mind about this.  Should you actually be diagnosed with an easily treatable prostate cancer I believe it would be foolish to automatically rule out any treatment option only on the basis of past experience with another, unrelated medical condition.  Of course, you hve complete freedom in these choices but I hope you make your decision based on sound research and after consulting with a variety of experts.

Best of luck to you,

K

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.

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.

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

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

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

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