Advanced Prostate Cancer
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Question on PSA

For years I worked at a company that required blood test for health insurance. they tested for drugs, alcohol, BMI, cholesterol count, liver count, blood pressure etc. My doctor tested my blood once sometimes twice a year for sugar and some other things. Nobody ever gave me the PSA test. I never heard of a PSA test till I was diagnosed with advanced prostate cancer. Otherwise I'm in great health. My question is why? Why didn't anyone catch this??

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That's a great question and one that has been highly controversial in the last six years since the U.S. Preventative Task Force recommended against PSA screening.

The arguments against screening are that many men are detected with high PSAs who do not have prostate cancer, or have an indolent form that will never bother them in their whole lives. Much needless anxiety, biopsies, and life changing treatments occur. Many of the men who were being treated really didn't need treatment, and many of the men with serious cancers who were treated were not cured by the treatment. Since the number of men who must be tested for each one who is saved is very high, and there is some cost in unneeded biopsies, possible infections, unnecessary treatments, and anxieties, the tradeoff isn't justified.

On the other side are men who do indeed have dangerous cancers and who might have been detected in time to cure them.

The problem is compounded by the fact that the word "cancer" is so scary. There are men who, when told that they have an indolent prostate cancer that doesn't need treatment at this time, will demand it anyway. If their urologist won't cut it out, they'll keep looking until they find one who will.

My own personal, non-expert, inclination is that men should be tested. Most urologists agree with that view. It's very little extra cost and no extra trouble for the man who is having blood drawn for other purposes anyway. Overtreatment is indeed bad but, especially now as MRI and different kinds of x-ray scanning are getting better and better, it should be possible to greatly reduce the total amount of unneeded treatment while still finding the men who really do need it.

I believe that the doctors who are not testing their patients are genuinely trying to do the right thing. They've read the studies that say PSA testing isn't worthwhile and isn't good for their patients. They aren't being lazy or deficient. However I am not convinced that those studies came to the right conclusions.

That's not much comfort, is it?

Alan

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I was saved by a DRE- is that still being done on physicals. Some famous people who passed on the DRE are no longer with us.

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Glad that you are well

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The DRE saved me too.

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On the face of it, it seems really weird to me that even a good uro-oncologist can detect cancer of the prostate by inserting his finger up your arse and feeling your prostate. Would not a 3T multiparametric DCE-MRI contrast test of the pelvic/prostate do a much better job than this crude subjective DRE ?

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the difference in cost between an MRI contrast and a DRE is hhhuuuggggeee.

The fact that you don't think a regular Doctor can detect a bump or lump on a prostate has been proven to be naïve many, many times. It is an indication that something may be wrong and maybe a biopsy or your MRI should be done.

The reason that I said a DRE saved my life is that my PSA's in late 1990's up to 2001 were all well below 4.0 At that time 4.0 was considered safe and did not trigger any follow up although toward the end of that time- rate of increase even if less than 4.0 was being looked at. I was 3.8 at time of diagnosis with a Gleason 8. Without the DRE I don't know when my PSA might have indicated some problem. PSA's were not a regular part of my health care- EXCEPT for the physical the VA gave me when i signed up for care at the Orlando Clinic.

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I was going to make the same comment with regard to cost. A DRE got me sent to a urologist for a biopsy. Gleason 8. PSA, ordered by urologist and not by GP, was 2.7. The previous year it was 2.9, so there was no way a PSA screening alone would have pushed me towards treatment.

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Glad to hear your story. Big difference when the cancer is detected within the prostate.

Sad that some have died after refusing a DRE because it seemed too gay to them. Hope you're doing well.

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Actually doing really well. Chemo, zytiga and prednisone seem to be working. High energy levels and no pain.

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Thank you for your response. Yes it is complicated. I'm glad that we have better treatment today than we did 10 years ago. Going to stay positive, eat right, and continue treatments.

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In another 10 years, I would be highly surprised if far better treatments than we have today did not exist. Btw, what does "eating right" for advance metastatic prostate cancer really mean ?? Thanks in advance for any help.

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Eating right? Well--my daughter is always at me to eat better. Says that the sugar feeds the cancer. I don't know but I understand that certain things like alcohol etc are not good for you if you have cancer. I never overindulged in anything. So, I am open to suggestions from others in my situation. That's why I'm on this site. Is eating right and exercise going to prolong our lives if we have advance prostate cancer? Some guy on YouTube uses molasis and baking soda to make his blood more acidic. Clams this is curing him. This can also raise your blood pressure. Thanks for responding, I appreciate your feedback.

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Thanks, lincolnj8. Sugar and alcohol are both not good for cancer patients, especially if in excess. I was wondering about things like cured, smoked meats, dairy products. Don't know, just asking. Thanks again, lincolnj8, much obliged.

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Skip All proceeded foods and all animal proteins is what holistic medicine suggest for cancer patients.

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Don't know about smoked meats and dairy products, should eat more vegatables and fruits I guess

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Now I'll have to do some googling again. I thought the goal was to make your body more alkaline.

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That’s also true.High alkaline is the holistic approach.

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Excellent authored as always.Thank you.

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My husband’s could have been caught easily too. We did not know to ask about PSA testing either. He was 51, PSA 3,700. You are not alone.

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All you can do is stay positive and enjoy your life the best that you can. Thank you for reading my post and maybe a cure will come

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When my father was diagnosed with PC three years ago, I asked if him to ask his specialist if I needed to be tested. I also asked my local GP. Both said I should consider a test at 50 but no reason to at the age of 41. Two years later ( four months ago ) having no symptoms I went in for what I thought was a water infection, had blood tests and had a PSA of 58. I have advanced PC with extensive mets. Feel let down by the healthcare advice given and that my prognosis could have been prevented or at least given a longer life expectancy.

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That is so sad. I feel let down too. Thanks for reading my post.

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You were let down. Fortunately, I had a very good GP doctor when I was in my 40's. My annual physical always included a DRE and a PSA test. I was diagnosed with prostate cancer at age 66. You are in the right place here to get information and support.

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At age 65 PSA was high normal "'nothing to worry about, we don't put much faith in PSA tests anyhow'" 18mo. later , stage 4, metastasized , fast growing, aggressive, invasive, incurable, going to kill you, Gleason 9/10. Yes, I feel a bit let down by GP for not referring me back then.

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I feel your pain. I'm at stage 4 metastasized also. Hoping for a few years

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You will have many. Others have over come worse. You will also. Don’t think about dieing too much we all will get there.. I’ve had days when I ve prayed god to take me.Not that simple.But after the dark comes light and overcoming this first treatment phase will give you a second chance at life Without treatments most of us would be gonners..

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I found out 2 weeks before Christmas. In bad shape, put in the hospital after going to the emergency room. Blood count in the 6's. After 3 days in the hospital and 4 pints of blood, I was released. 4 months later, having chemo, Zytiga and prednisone, blood is in the 10's, appetite is good and most of my energy levels are back. Thanks for your encouragement and reading my posts

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Boy! We want to stay out of those hospitals... I don’t even like going to hospitals for testing.. Less time there the better.. In Tucson there are many retirees.. The cancer center are full to the brim. Its an epidemic in my opinion. I have friends with stage #4 lung and colon cancer... All terribly brutal.. With APC we get our manhood and strength taken away. That colon cancer is no joke.. we just keep pushing back.. It reminds me of one of my first childhood books. The little engine that could...I think I can I think I can... stay happy , that’s the key in life.. No matter what is thrown at us,,, keep chugging along to the end of the line.. get thru this first round of treatment.. Its a nessesary evil. you’ll survive it though to live and recieve more love and good stuff in life.. there is a song by the traveling willburies with Tom Petty, The end of the line... It’s alright.. driving along on the freeway,, we are all going to the end of the line. Hopefully we have many stops along the way..,and take time to see not just the pain and suffering but the true beauty that is around us. APC is an eye opener. You’re going to be here for awhile.. it ain’t over yet.. A year from now with luck and prayers you ll have some success with treatments and extend life... you ll feel better.. that’s our hope..

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Many stories like ours and medical mischief..

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There were some stats in the uk papers recently 🇬🇧 that suggest you are 5 x more likely to get prostate cancer if your father or brothers have it! Surely testing should commence from 40+ for these individuals. Looking at this site alone there are many posted cases in the 40’s category of age. I haven’t seen many below this. My brother was tested as a result of my diagnosis the doc told him no problems see you in 5 years! My cancer developed within 18 months so this is very bad advice. I told my brother to insist on yearly testing. 👍

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My twin brother gets tested now every six months. I was diagnosed at age 66. I am 68 now.

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I was diagnosed at age 63- now 79. I have a brother 2 years younger and a son 22 years younger- my brother was diagnosed at age 75. I was Gleason 8- my brother 7. My son is now 57-still negative.

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I'm hoping to live as long as you, I'm 66. Don't know what Gleason 8 is. Know I'm at stage 4 mastisized to lymph nodes and bones..

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I’m 57, my goal is 60, but every day is gravy for me.. even if in pain, I’d prefer that over pushin daisies.. No living being on earth avoids the transition back to dust.. my reality is that I’m doing o k now.. I’m not in brutal pain, thank god, I’m way far from being a normal man chemically, emotionally,physically,That won’t change. I’m feel born again and slapped in the face being told by the higher power to change my evil ways be kind to those around me and not waste precious time with negativity . prior to 3yrs ago I spent my life working but also working out. I was a skinny kid trying to get muscle on .. My veins where promenant and good. Now they’re tiny collapsed and they have difficulty giving me IV s.. I am 57 but after RT and 3yrs of adt I’ve aged 25 overnight... side effects ? You’ll have them... then side effects are just singing to the choir..or singing in the rain......I used to sing soprano , now a little bit higher... the point is.. I’m still singing.... good luck weeding thru the APC maze!

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You have a great positive attitude..

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Not always, I can be a moody SOB.. ask my wife??? An innocent victim in all of this..

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Good for the son...and good that he continues in th future to get tested..

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Isn’t that only nessesary if he has symptoms or an elevated PSa?

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When I say tested, I mean that his PSA is tested every six months. Having identical genes, if I've already been diagnosed with PC then that is something that he needs to worry about and stay on top of.

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That is true.. if I had been on top of it, I might have avoided a lot of suffering ..

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My dad and uncle both had it.. I didn’t have insurance and never went to doctors .. I fought stupidly thru symptoms for years . Saying to my self “ It’s just the normal mid life male crisis stuf. I nearly killed myself.. still I have friends with issues that refuse to go to a urologist.. male ego was almost my undoing.

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I agree with Alan Meyer’s assessment. My husband was diagnosed in late December with Stage 4, locally advanced PCa. Unknown to him, his primary doctor had ordered a PSA in July 2016 while other routine blood tests were being run. That result, which we were unaware of until November 2017, was a 9. As the urologist who did the biopsy explained to us, the same committee that nixed routine PSA testing, also recommended a full discussion with the patient before a decision be made to test. That discussion would include all the points of how PCa had been overtreated. If my husband had known the test had been run, he would have followed up. My point here being, having the test done amidst a raft of other blood tests might not have given you the knowledge anyway. Unlikely, but here’s our case.

However, after our initial shock and anger about the 5-4=9 Gleason and 34 PSA, we’re realizing that we have to deal with the here and now and move forward with faith in the treatment plan that was made after much research and discussion with doctors in whom we have confidence. It seems logical to assume the cancer would not be so advanced had the primary doctor done his job. Am I still angry about that? Definitely. Do I have questions? Many. However, I won’t be able to help my spouse if I stay mired in anger. ADT has been started and EBRT (40 sessions) will commence in May. Since I don’t want that first doctor hurting others, I hope I can do something about his malpractice in the future. Right now, we are putting our energies into getting through treatments as well as living the best we can each day. My best to you as you walk your path!

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I was diagnose also in December. PSA at 851. Was energetic and in great health. I'm at stage 4. Spread to my lymph nodes and organs and bones. On Zytiga and prednisone and chemo. Very angry that this wasn't caught since they said that I had this for 5 years. Somebody dropped the ball. Like you, I want to put my energies on getting well and enjoying life. I read that I may have 4-5 years. Thanks for responding, I appreciate your feedback.

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Think positive...my husband was diagnosed in 2005 - and was told by his urologist he has 5yrs. He did the watchful waiting and in 2008 he had HIFU done in Germany. He was fine until Nov.2017 when he was told "cancer" is back. He will have Proton Beam Therapy this time! Have several friends & acquaintances who have had Proton done as far back as 15yrs & last year and as recent as last year and doing well without any side effects.

All the very Best to both of you & Good Health!

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Going to look up HIFU. Thanks for responding, I appreciate your feedback.

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If there’s one thing I’ve heard again and again on this and one other discussion board, it’s that each man’s course of disease is highly individual. There’s men here that will tell you to not be concerned about stories of how long they can expect to live because they are beating the odds.

Research is constantly changing approaches to treatment. If you aren’t at a specialized cancer center with oncologists whose practice is focused on prostate cancer, then I would encourage you to seek 2nd and maybe even 3rd opinions from someone at an NCI endorsed Center.

My best to you, Mary

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I have an oncologists whose practice is focused on prostate cancer. Thanks for responding, I appreciate your feedback.

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I think everyone being tested- no matter for what- should get a copy of the results. If you don't understand the results ask someone- DO NOT count on your Doctor.

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I absolutely agree! My doctor has a patient portal and I always check my test results. Despite having several serious health issues in addition to cancer, my husband seems to take no interest in his health. That doctor (who’s been fired) still uses all paper records. My spouse is an otherwise intelligent man but I’ve given up trying to get him to take better care of himself. It’s the scariest and most difficult aspect of the PCa diagnosis. He’s been told about diet and exercise measures he should start but I’m not holding my breath to see if he complies.

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That's a shame. Unlike most medical problems PC needs the patient to take a leading role. Urologists cut, radiologists radiate and oncologists do chemo. What are the odds that every patient they see needs what they happen to make a living from?

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They have job security, that’s for sure.. I don’t think I’d be here today if it hadn’t been for 3 out of 4 of the above Doctors. Yet to do chemo..Yippie! I gave thanks to the lady giving me my 3rd yearly ct scan yesterday.. If not for this modern medicine I don’t think I’d be here today.. so I also have Complaints about healthcare and society but the fact is “ It is what it is” I give credit to every person that s helped me in the medical field. Most people do want to help the patient.. I was only in the hospital for one week in ICU.. in that week certain nurses were angels and one broke an i v off in my arm. She was having an emotional breakdown.. stay away from hospitals.. average onocologist annual pay is $ 700.000 . Good for them .. They ve helped in giving me more life.. what that worth?

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Taking meds and a few diet changes may add many years to his life. That's what I'm doing and hoping for the best

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I have the same issue with my wife. She is seriously overweight and diabetic yet refuses to exercise.

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That a tuff one.. you can’t force none to do anything.. to my reward is my wife .Her mom has diabetes and always eats correctly in order not to get it. She cooks for me and cracks the whip on my ass if I’m laying around lethargic.. if not for her cooking organic and leading me to exersize , I’d probably wouldn’t eat near aw well and I’d surly lay around more. It s easier if a pair is on the same eating and health routine. How do you find motivation?

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I also felt some malpractice being under a urologist care or 6 weeks pending a biopsy after the doctor returned from spring break with his kids. Then going into the hospital ; ie kidney failure,neauphrostomy tubes for 1 1/2. Later they told me that the urological office changed its policy due to me to get super advanced patient quickly biopsyed ..maybe it helped the next guy.. anyone having contact with mod med has a story .... Not staying mired in anger .. well put..... let things go.. hope that you are having a good day..

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I remember 20 years ago when I had to fight the General practitioner to give my husband a PSA test. The bickering distracted me from the fact that his PSA was already slightly elevated. We had to pay for the test but went back and forth with the office/insurance about it. We quit that guy.

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Burnett1948.lincolnj8. I know a lot has happened for the good in recent years. Before 2000 my towns Doctors was telling public meetings about men's health: don't worry about Prostate Cancer because something else will get you before it does. I was being given viagra when I couldn't complete sex. Now I'm reading on Prostate Foundations Websites that it is a symptom. At Fairs/Shows the Men's health check ups didn't talk about Prostate Cancer. I use to be given digital examinations but never a PSA. I never heard about a PSA blood test until 2005 when I was given a PSA with a lot of other tests. In other words I wasn't told I was having a Prostate Cancer test. I found out when this test showed a PSA of 7.6. I had gone to my doctor and told him I was getting up a number of times a night to empty and was told it was just old age. I went back to him and told him there was something wrong with me so he gave me every blood test he knew of. My the way I had a biopsy after the PSA 7.6 reading. I was conscious and felt ever one of the six samples taken. Each sample was positive with 3+3 gleason score. This was upgraded to 3+4, so even the scientists couldn't agree. I'm an Aussie. When I heard the word cancer I freaked. Now I've got that off my chest; I haven't been helpful and its all history because the science and Prostate Cancer knowledge has come a long way. I am now hopeful that improvements in treating Recurring Prostate cancer will be given to me at the right time and will allow me to enjoy a reasonable life.

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I'm hoping for the same thing Burnett1948. Enjoy my life. Never had any problems till I ended up in the emergency room. Blood read in the 6's. Psa was 851. They said that I had prostate cancer for about 5 years and the it was at stage 4. Surprise, surprise. Yet I , like you, was told that I can live a long life with treatment. Hope they are right. Thanks for responding, I appreciate your feedback.

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Yah! I agree.. when I heard terminal cancer I thought I was a dead man walking.. in fact thats what we all are.. dealing and attempting to prolong our life’s.. we walk on borrowed time. Make the most of the things that we enjoy everyday. It’s all a crap shoot at long term survival. Hope and prayer is at times all we have.. sometimes...

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Hi Lincoln, i had so called health exams every three years. While we had no blood test the quack at the health center always insisted on a DRE. The last one he did kinda hurt a little but i blew it off. About a year later i was diagnosed with stage 4. According to my Uro i had it for 5 years and would have been detectable one year earlier wirh a DRE. Hmmm, he didnt say a word. Like you i didnt know what a Psa test was.

Thomas

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Wow, the same thing happened to me. I was very active and energetic always up to about 3 weeks before I was diagnosed. They said that I had this for about 5 years like you. REALLY? Never had a DRE. (don't know what that is). I'm at stage 4 also, taking Zytiga and prednisone and my PSA is at 6. Was at 851. Trying to eat healthier and plan to beat this. Thanks for responding, I appreciate your feedback.

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DRE - digital rectal exam or, as I like to affectionately call it, the fickle finger test. I'm not complaining or mocking it one bit -- it saved me, and got me into treatment early in the disease progression.

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Uros more common than not , act infallible.. mistakes are common..

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Digital Rectal Exam

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Haven't had that yet

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The "quack" puts his lubricated gloved finger up your rectum and feels for any lumps in your prostate looking for tumors. Are we still stuck in the 1980's or 1990's ??

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There's nothing 'quacky' about this test. It is an inexpensive test, as opposed to your super expensive new-fangled MRI test. It got me referred to a urologist for a biopsy that revealed gleason 8 cancer. Your attitude is all too typical of most men and too many doctors. This thread has already revealed many unfortunate men diagnosed at stage 4 who now wish they had been embarrassed with DRE tests.

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Another thought -- insurance companies require justification for expensive tests. I wouldn't think an MRI would be approved unless PSA was elevated ... or yes, the DRE turned up an abnormality.

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I agree with you 100% IF "cost" is the issue concerned.

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Oh! The Doctor uses his finger.. and all the time I thought....

Good Luck and Good Health.

j-o-h-n Monday 04/02/2018 11:30 PM EDT

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The “quack “ used lube? He can’t be that bad...

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Had my first and only DRE . Doc said you have a giagantic prostate.. I said I don’t have insurance. He said , you better get some. The girl inserted a foley and said “welcome to the golden years”! Thus the saga began.

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My PCP gave me a PSA test as part of my physical exam when I was 43 in 2001. He didn’t ask me if I wanted it as it was part of his normal practice for men over 40. Thank god he did as my PSA was 6 and a follow up biopsy at my urologists office confirmed I had prostate cancer, Gleason 4+3. I had my prostate removed in early 2002. Unfortunately, in 2012 my PSA started rising and I know have stage 4 PC. But, if my PCP had not tested my PSA in 2001, I probably would no be alive today.

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After the radical surgery in 2002, for how long were you incontinent ? Have your ten years since the surgery in 2002 to 2012, been good from a quality of life point of view ?

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After surgery I was 99% continent within 6 months. My QOL from 2002 to 2012 was excellent. I resumed exercising (running 6 miles and working out at the gym), worked and travelled. I was not under any treatment during this time as my PSA was at or near undetectable. I did forget to mention that 6 months after surgery my PSA started to rise and I had salvage radiation. I had no side effects from the radiation and my PSA dropped to undetectable until 2012.

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Thank you, sfboy58. I wish you all the very best in life. Cheers !!

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This makes me appreciate the GP doctor I was lucky to have for many years. Every year from my early 40's he performed the DRE and ordered the PSA test. Medical schools should make their GP students read the posts on this site.

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