PSA Testing: Wife still upset that our... - Advanced Prostate...

Advanced Prostate Cancer
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PSA Testing

lincolnj8
lincolnj8
149 Replies

Wife still upset that our family doctor which I visited at least once a year for about 15 years never did a PSA test. Yes I looked like I was in excellent health, but never a PSA test. I had never heard of a PSA test. Always working 6 days a week. She wants me to get a lawyer. Into this 11 months now, stage 4, psa down to .1 and feeling great. On Zytiga, prednisone, and Lupron. Also oscal, vitamins and monthly infusions. I ask the doctors office why they never did a PSA test. Never called back. I'm 67 and hoping for a couple of good years. This forum is amazing. All advice is appreciated..

149 Replies
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HiddenThis reply has been deleted
lincolnj8
lincolnj8
in reply to Hidden

Unbelievable, those guidelines ? Wow

2 likes
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Lulu700
Lulu700
in reply to lincolnj8

Yah, guidelines ?

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William123Cooper123
William123Cooper123
in reply to Hidden

Don’t sue the doctors ... you’ll never get anyone (doctors) to treat you ... don’t even discuss lawsuits or malpractice.

Treatments are an “art” and not a defined science. Any treatment can be justified in court, and the no doctor will touch you.

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Lulu700

That was my experience.. I stuck with the same Dr.. because no one else wanted to inherit his mistake...A yr later they told me that they changed their guidelines to get super aggressive guys a biopsy right away , instead of postponing mine for six weeks in part while the dr took his kids on spring break..

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lincolnj8

Great advice, thank you

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Lulu700

That is factual !

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WSOPeddie
WSOPeddie
in reply to Hidden

You're lucky to be alive.

2 likes
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Lulu700
Lulu700
in reply to WSOPeddie

That’s a fact !

1 like
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Lulu700
Lulu700
in reply to WSOPeddie

We all are brother.hope you’re well today .

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Nalakrats

Your doing well now at 0.1--don't drive yourself crazy about the past--I had to get one GP fired in my life for something else--and it was as I look back--shame on me for not getting a Second Opinion---also this past January--had another Doctor put up for Peer Review against me--he lost and was shipped off to another location. Most Docs. have Hospital associations that support their practice--If you know how to get to the CEO, or the V/P of Patient Quality Control Services as I do---you can make their lives miserable--but suing, usually fails. I will not let our System F*** -with me. I know the game too well--I made one mistake---and boy did I learn---there is no trust and verify--it is verify, before considering to Trust. I even a few years back grabbed a doc--GP by his front shirt collar and picked him up about a foot off the floor--and told him if he wants to make a peep, that I would catch him one day--and I said a few other things that I cannot print. Yes I am sorry I did that--and had to repent.

Let the water go under the bridge---Lulu's journey, as he described, I am well aware of---and by the Grace of GOD he survived.

Nalakrats

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Lulu700
Lulu700
in reply to Nalakrats

BY the grace of God you are here and always helping others.. PEACE

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lincolnj8
lincolnj8
in reply to Lulu700

I'll help all that I can..

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lincolnj8
lincolnj8
in reply to Nalakrats

That's how I feel. Just live and enjoy your life. Nobody knows their time. Went from an 800 psa down to .1. I am so lucky..

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Nalakrats
Nalakrats
in reply to lincolnj8

More Prayers to go to <0.03 and stay there for a long time[that is the ultra Sensitive test that indicates--undetectability}

Nalakrats

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Lulu700
Lulu700
in reply to Nalakrats

Flying under the radar for as long as weather permits... Peace Nal ..

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Lulu700
Lulu700
in reply to lincolnj8

My high was only 20 Psa. 800? man you were on fire. We’ve seen some guys with thousands. Whoa. Glad that you’re hanging tuff.. we’re in the first chapters with great results so far .. let’s add many more ......and find enjoyment every single precious day walking this earth..

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Brbnbrn
Brbnbrn
in reply to Lulu700

Yeah... before we knew a whole lot, after my husband's 2nd PSA test resulted in a 1,200 plus, his DO told him he set a record with the highest he'd ever seen... we were so uneducated at that time... I'd of slapped him now...

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Lulu700
Lulu700
in reply to Brbnbrn

Hahaha, very funny. I too have recieved “Jack ass “ commentary from my urologist .. Like when he got my dx he kinda muttered loudly to my wife and I, “ Dam, I can’t make any money off of you because you are not a candidate for surgery... “!! They did many other surgeries replacing tubes and stints for over a year.Then the next year I let him chop the boys.. He was ecstatic.. finally made some $$ off of me.. a great surgeon , no bedside manner..

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Fairwind

Many doctors bought into the argument that PSA testing did more harm than good, that "most" of the PC it detected was harmless and PSA testing lead to unnecessary treatment..But that argument ignores the 30,000 men who die every year from PC.. Without PSA testing, the death toll would be higher as many high-risk cancers are detected when they still can be successfully treated..Without PSA testing, you are throwing these high-risk men under the bus..

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Lulu700
Lulu700
in reply to Fairwind

I agree 100%

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lincolnj8
lincolnj8
in reply to Fairwind

I agree 100% too

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Twoofus
Twoofus
in reply to Fairwind

I agree, as I was thrown under the bus on this one. All PSA tests through 2011 were fine. Doc stopped PSA testing after that. In mid 2015 I started having severe pain and fatigue. The four months it took to diagnose PCA were a joke in medical practice, as my pain and fatigue were diagnosed as many different problems. Finally a new doctor did a PSA test and it came in at 27. Still struggling with pain and fatigue, and now told I have advanced prostate cancer. I have no intention of getting a lawyer to sue anyone, but I recognize this is a difficult area. I'm not a doctor and have almost no ability to diagnose any ailment. Physicians have only limited abilities to diagnose many problems, especially quickly.

I simply was unfortunate to get this suck disease. Trying to live and enjoy my life as much as possible. Love my family especially my two grandsons and a grand daughter due to arrive the first of the year. I have no desire to add dealing with lawyers to my problems.

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Lulu700
Lulu700
in reply to Twoofus

You’re right! Concentrating on what’s good.... way to go... grandkids bring joy...I only met one of my grandpas one time .Iwas just a few years old but I remember it. He gave me an o’ Henry candy bar and a warm spirit. He died a year later..Those grand kids will cherish you forever.. Must be great ... Enjoy those kids.......

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charlesmeyers1964

i'm under cancer nw i would find them not some stupid oncologist who in my opinion are maintenance drs nothing more. u don't like them switch there are a ton of oncologist out there. if u live in a big city then go to a university who studies and treat prostrate cancer pts and stick with them.

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Lulu700

The urologist that saved me with tubes into my kidnies told me “ We are just plummers”

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lincolnj8
lincolnj8
in reply to Twoofus

Life goes on. Like you, I plan to enjoy each day from now on. Every day without pain is a great day. Thank you for your post

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Lulu700
Lulu700
in reply to lincolnj8

Amen to that😎

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Hidden
Hidden
in reply to Fairwind

I CONCUR

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Brbnbrn
Brbnbrn
in reply to Fairwind

Absolutely... if my husband had had some follow up when it was 9, I doubt if we'd be where we are now...

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HiddenThis reply has been deleted
Lulu700
Lulu700
in reply to Hidden

All humans are fallible , even Dam Doctors. Although few believe that they are fallible.. we know different..

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Cynthgob
Cynthgob
in reply to Hidden

Same here!!!

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Lulu700
Lulu700
in reply to Hidden

That is total BS... I’m sorry that happened to you.. it’s a miracle that any of us are alive.. the pros and cons of modern medicine ..

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lincolnj8
lincolnj8
in reply to Lulu700

What bothers me is the fact that it is about the bottom line. Profits. All about profits

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Lulu700
Lulu700
in reply to lincolnj8

Nuttin new under the sun ..$$$$ the o mighty buck rules .. corporations rolling over the planet ...

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lincolnj8
lincolnj8
in reply to Lulu700

Just don't take away my ice cream, gives me my incentive to go out today and finish splitting that big stack of firewood in the side yard. (using a log splitter). Life is good

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Lulu700
Lulu700
in reply to lincolnj8

Chop that wood! Take it easy Lincoln ..👍

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Brbnbrn
Brbnbrn
in reply to Hidden

Live it!

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Cynthgob
Cynthgob
in reply to Hidden

Same here.

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Cynthgob

I tried to sue as my husband had the same thing happen. The lawyer investigated and said there is not enough proof that not doing psa test is negligent . Husband thought he was getting psa. We had a great life planned. I HATE that asshole dr.

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Lulu700
Lulu700
in reply to Cynthgob

Unbelievable if not true...

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lincolnj8
lincolnj8
in reply to Cynthgob

I feel your pain. And I worry for my wife if I'm gone.

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Lulu700
Lulu700
in reply to lincolnj8

Me too...

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Miriver
Miriver
in reply to Cynthgob

My husband told me to sue for same reason..Is your husband still alive?

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Lulu700
Lulu700
in reply to Cynthgob

I re-read your words . I got pissed off for you too. Hard to digest.. dory that happened...

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Lulu700
Lulu700
in reply to Cynthgob

Sorry that happened..

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Brbnbrn
Brbnbrn
in reply to Cynthgob

I get it. We come from an era where we were taught Doctors were gods... not to be doubted or questioned. Ugh...

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lincolnj8
lincolnj8
in reply to Cynthgob

I know that anger. Had to let it go. The incompetent doctors have to live with themselves. I'm in this mess over a cheap PSA test that wasn't done. Damn, I think I'll grab a bowl of ice cream, chocolate chip. Starting to feel better already. I'm going to enjoy everyday that I have left. Lucky that my wife is healthy. A year and a half ago, when I was diagnosed, because of that my wife got a mammogram. They caught her breast cancer in a very early stage. A small surgery followed with treatments and now she is cancer free. Guess there's a reason for everything.

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MarkBC

I never had a PSA until I was stage 4. There was no need. No family history. I was only 55. Digital rectal exams always seemed clear.

I can understand your anger at doctors. It's a difficult balance for the medical community. Everything they do costs money which could be used elsewhere. For example, we could do an MRI on every citizen every year trying to find something that might be wrong but that would be an enormous waste of resources. We all need to find a doctor we trust but we also have to remember that they are human beings too. If you really think the doctor was purposely careless and you didn't trust him/her then you may have had the wrong doctor. Hopefully your doctor will reflect on your case and learn as I think mine did. I still trust my GP to do his best but I recognize that he is human.

I don't think it is healthy to spend time thinking about what might have been. Focus on your future and living a healthy lifestyle with less stress. Keep up with developments. Make sure you have medical professionals that you trust.

I agree with you that this a great forum.

Best of luck to all of us as we carry on through this journey.

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Lulu700
Lulu700
in reply to MarkBC

Don’t hate the Doctor hate the system.

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lincolnj8
lincolnj8
in reply to Lulu700

I can't waste my time on hate..

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Lulu700
Lulu700
in reply to lincolnj8

Even better..

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HiddenThis reply has been deleted
lincolnj8
lincolnj8
in reply to Hidden

I have to give up on anger. There's not much that I can do. But, look at things differently now. So many things to enjoy in life

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charlesmeyers1964
charlesmeyers1964
in reply to Hidden

remember most oncologists are below to me as a doctor. my doc is a specialist in breasts not my prostrate but found other docs since i was dx 10 years ago. remember this its your body, its up to u to make sure everything is a-ok.if your happy with your so called oncologist change and find another. remember again its your life if u die they don't give a shit.

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Miriver
Miriver
in reply to Hidden

Family doc ran PSA but at 3..did not seem to be alarmed. When husband started having trouble urinating at night...she gave him antibiotics for a bladder infection...which he did not have... I asked to have her refer him to a real urologist..she did...and urologist had him do next day biopsy..called him at home & full blown 4th stage cancer that metastasized from his prostate to his lymph nodes extensively.

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WSOPeddie
WSOPeddie
in reply to Miriver

It was a DRE that got me referred to a urologist for a biopsy. My PSA at the time was 2.7 which is below the threshold for alarm. Did he get a DRE? PSA alone isn't definitive as both of our cases show. BTW, the 'standard of care' recommended by the high falutin' "preventative services task force' (or whatever they call themselves) is to not bother to give anyone over 70 a PSA test. Their recommendation is also to let the patient, of any age, to decide whether he wants a PSA test. Guess they don't want to disturb anyone with ugly reality and don't want men to be 'over-treated'.

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lincolnj8
lincolnj8
in reply to Miriver

I'm in the same boat. Nearly died in the hospital last Christmas. Needed blood to stay alive. Was lucky that the treatments worked. Never a sick day for many years. Retired at 65, hope to see 68. Did the full body scan, lit up like a Christmas tree. Just sad that this disease is missed on many of us.

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Lulu700
Lulu700
in reply to Hidden

If there was justice?

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lincolnj8
lincolnj8
in reply to MarkBC

I changed doctors.

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tallguy2
tallguy2
in reply to MarkBC

I had a PSA every year for 20+ years. When PSA hit 4.0 I had a biopsy and, upon having a RP it was determined that I was already Stage IV.

My point is that an area of research that is sorely needed (and that I pray is underway) is finding ways to intercept PCa prior to it leaving the prostate gland. Waiting until PSA=4 isn't good enough, at least not in my case.

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lincolnj8
lincolnj8
in reply to tallguy2

Wow. PSA=4. I guess more research is needed..

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charlesmeyers1964

0-4.0 is the average reading of a psa. mine hit 5.7 and i was thinking if i should then had the biopsy reach 8 then had the lupron/eliguard shot and when it cam back i had radiation. be pro-active

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WSOPeddie
WSOPeddie
in reply to tallguy2

See my note above. My PSA was 2.7 when I was diagnosed. I was lucky that a DRE turned up an abnormality.

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tallguy2
tallguy2
in reply to WSOPeddie

Yes, waiting until the PSA hits 4.0 is the "standard of care" but doesn't help everybody. You and I are examples.

Also, waiting until the PSA hits 2.0 while on ADT (after RP) before doing scans isn't always right for every man...I am an example of this. I had a chance MRI of my back in February with the PSA <2.0 and this picked up abnormal lymph nodes. Would have waited approx. 6 more months to catch this using "standard of care." Will any of this make a difference in the long run? I don't know.

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Lulu700
Lulu700
in reply to tallguy2

Did you recieve any lower PSA scores over those 20+test before the 4?

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tallguy2
tallguy2
in reply to Lulu700

Yes, I tracked the PSA every year and watched it gradually rise. The velocity was low as was the trajectory until the year or two before it hit 4.0. It had started to rise more quickly in 2010 and 2011. That "acceleration" of my PSA is probably a clue for others to take action before the PSA hits 4.0. Not sure insurance would pay for a biopsy before a PSA of 4.0 is reached unless there are other results that compel a biopsy.

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Lulu700
Lulu700
in reply to tallguy2

Thanks!

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charlesmeyers1964

remember its been around for tons of years after u hit 50 get a psa every year until u die so its part of the pts and the doctors fault to have them check.

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i've seen on tv average psa testing should have been testing one time a year once u hit 55. i would blame both of u guys. your number is 0.5 so now that its now below the average readings then coninue it every 6 months. if it doesn't move then once a year. remember the luprin/eliguard removes your bone mass that is one of the side effects so remembger as u get older your going to have bone loss and it will start to hurt just be careful on your how often doing the readings.

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Lulu700

Unless your pop had PC like Mine did..Then test at 40. No one told me that ,until after I tested at 53 .#4 .ooops too late, can’t pee.. Tell your sons don’t do as I did. Pushed through symptoms for years . Saying “ I.m alright , I’m alright . . “ I don’t need no Doctor”. Nearly did myself in... ego...

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tallguy2
tallguy2
in reply to Lulu700

I agree with you. My father had MPCa and kept me informed every step of the way over his 17 year journey. He was Stage IV from day one, like me. So genetics should play a role in the decision-making.

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Emmett50

Then there’s a case like my spouse’s. His primary did do a PSA-twice- but included it with a usual panel my husband gets regularly. The doctor never told him it was included nor did he tell him that the two values from those tests were 8 and 34. About 18 months after the first elevated PSA, my spouse had urinary symptoms and decided to see a urologist. That specialist requested records from the Primary and discovered the PSA tests. It was the first Paul knew of those tests. He was diagnosed after biopsy and various scans with Stage 4a prostate cancer - locally advanced to 3 lymph nodes. His PSA was 41.

I was and still am angry with that Primary. Paul immediately changed to a new Primary. He’s doing well thus far on Casodex and Lupron. He received 39 sessions of EBRT. His PSA is .07 and T is <.12.

I’ve left it to his decision whether or not to pursue any kind of action against the original Primary. It’s his body and his life to lead as best he knows how at this point. If it is a complication he chooses to leave unaddressed, so be it. He surely doesn’t need any stress or second guessing of what might have been. I am not in a place of acceptance from time to time on the issue. That’s on me and my spiritual condition. Cancer is a learning experience for both the patient and their loved ones. Lincoln, do what you need to do for yourself. As long as you keep communication open with your wife, I’m betting she’ll continue to give you her loving support.

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Lulu700
Lulu700
in reply to Hidden

Dam AMA!

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ewhite999
ewhite999
in reply to Emmett50

Wow! Now that’s a lawsuit that could be won. The doc doesn’t share those PSA scores with the patient? No excuse for that one. I agree with those who say it’s better to concentrate on the future but that doc should be dealt with.

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Emmett50
Emmett50
in reply to ewhite999

That’s the concern that keeps nagging at me - he’s likely still endangering other lives. I’ve met this doctor and he was, at best, socially inept. My husband wanted me to go to a couple of his appointments. He introduced me to the doctor who never acknowledged my presence. In fact, he barely acknowledged my spouse. And he never touched him! He kept his face in the paper medical records that he carried into the room. I know that none of those quirks warrant legal action but his behavior was plain weird.

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ewhite999
ewhite999
in reply to Emmett50

That’s the new approach to healthcare. They stare at a monitor, type a bunch of stuff and never look you in the eye. I found a urologist who broke that mold. He’s awesome. Looks you in the eye, no keyboard or monitor and actually listens to you.

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lincolnj8
lincolnj8
in reply to ewhite999

Good for you

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tallguy2
tallguy2
in reply to ewhite999

That's a urologist I would keep. Mine too is very knowledgeable and caring. You know the old joke about when a urologist touches you it can't be a good thing? After I got the news from him in February that I now had MPCa he gave me a hug.

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lincolnj8
lincolnj8
in reply to Emmett50

Thank you your support. Yes my wife is very supportive. She got a mammogram last spring because of my diagnosis at Christmas. Resulting in surgery for breast cancer that was caught very early. She is doing great. We're looking at life differently now and enjoying it.

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ronronHU

I'm not surprised!

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larry_dammit

Sorry to hear , I did go to a urologist every 6 months, PSA started to rise so gave me a simple blood test instead of a biopsy, a 4K. It said I had a very small 5 % chance of a aggressive cancer. , that was March of 16, started having issues with pain and such, August of 16 my general doctor old guy ordered a blood test. Alkaline phosphate level was 900. Set me up for scans,the rest is history. No perfect doctor or test I guess. Chemo, lupron and Xgeva monthly. PSA .005. Relax and live well my friend. I’m 27 months into this. I read about guys on this rag that are 10-12 years into or fight and still kicking. Fight the good Fight

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lincolnj8

After taken to the hospital, blood test showed that my alkaline phosphate level was at 3000. Couldn't eat. 4 pints of blood, 3 days in the hospital, so many B-12 shots. I was in a blur. My wife didn't think I had long and was very angry and scared. So now I just try to enjoy each day. 27 months into this you say. That's encouraging. I'm at 11 months and enjoying each day I'm here. And yes, lets fight the good fight.

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AaronG

You can choose to live in anger, in fear, in positivity and / or in hope. These are the challenges of prostate cancer complications.

I, too, hadn’t been PSA’d in five year nor had I been given a rectal exam by my Internist. When I complained re frequent urination ... boom! PSA of 9.75 and Gleason 8.

Post-surgery pathology indicated evidence of cancer on lymph node so am now hot flashing my way thru 12 months of Lupron. But PSA has consistently been <0.02.

I was angry at MD too but “PSA is controversial,” I didn’t raise my hand to complain re urinary problems and we all have a strong will to believe Healthy Checkup reports. Shoulda Woulda Coulda: I’m alive, cancer-free, ready to move on AND don’t want the negative energy of a malpractice suit. Moving on now.

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lincolnj8
lincolnj8
in reply to AaronG

Cancer free, that's great. life is good..

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harryb48

I must be the fortunate one, my GP was the one that initially warned me of rising PSA levels. His insistence that I seek the opinion of a specialist is probably the reason I am still here typing this response. The surgeon that did my prostatectomy on the other hand is not my favorite, make your choices wisely!

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Brbnbrn

We are in a similar situation... but I've (wife) decided to not address the issue presently. To focus on health, healing and living life without that conflict. I keep telling myself that it won't change a thing. I'm.keeping that anger at bay. My husband, Brian (65 y), did his annual PSA in September 2016. Never heard back from doctor's office so figured everything was ok... as usual. September 2017, PSA was 1,250. By the time a biopsy was scheduled & completed December 30th, it was over 1,600, with Gleason 5+5 in all 12 cores. Addition testing in January showed Mets to lymph nodes, 5 bone areas and his lung. Doctor said it was aggressive. His last PSA report was in the electronic medical records and I was VERY upset to see that in September 2016, his PSA was 9 with a recommendation he be tested for possible prostate cancer. After 6 rounds of taxotere, lupron, xytiga, casodex and now Zytiga with prednisone, his PSA when last tested was .4. He never missed a day of work, is getting back to the gym... going to retire, for the 2nd time, in April with the hopes of driving his classic Mustang down the Dragon's Tail! I don't want my anger and all the things that go along with a law suit to mar one minute of his feeling okay and living life time. It will still be there.

Blessings to you both, no matter what you decide!

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lincolnj8
lincolnj8
in reply to Brbnbrn

No lawsuits, no way. Enjoying life every day. No need for negativity.

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tallguy2
tallguy2
in reply to Brbnbrn

That's a great progress story, thank you for sharing it!

Let me know when you want to do the Tail of the Dragon...we live 20 miles from it's start on the TN side and have two Mustangs ready to try and tame it! (Warning: the Tail of the Dragon is the only road on which I've ever become car sick, as the driver!)

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Brbnbrn
Brbnbrn
in reply to tallguy2

Well, once we discovered Semi-trucks are not allowed, Brian is more interested in going. The GPS on semi's directed them to take that route as a short cut, but they couldn't make the turns! If we go... which has been a lifelong dream of his, I will contact you! We have an '85 and a 2005 Saleen Mustang. What do you have? This past 4 months or so, he's been watching drives on the internet so I'm pretty sure he's serious about going!

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tallguy2
tallguy2
in reply to Brbnbrn

We have an '89 5.0 hatchback and a '95 Cobra convertible in Maryville, both a blast to drive! At our summer home in CO we have our 1967 coupe with the 289 2-bbl.

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strummer
strummer
in reply to Brbnbrn

You give me hope! Thx

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mcp1941

I had a similar experience with PSA testing. During a routine physical I asked for what would be my first PSA test (1996) and Doc said that is now the standard procedure in his office. I had been seeing this doc for at least five years before this .PSA test came in at 95.0. Consulted with a malpractice attorney who said that since the test was available for more than 5 years earlier he thought that I had a good case. The attorney warned me that if I went ahead with suit my name would be entered into a national data base as a patient that sues. From that point on it could be difficult to get another doctor and never have a good relationship with one again.

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lincolnj8
lincolnj8
in reply to mcp1941

Wow, the have all their bases covered..

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pakb

Not a focus here either- our focus is on y husband's current health and living each day finding gratitude.

That being said... my husband was only 47 when symptoms began- We started seeing a urologist at first symptoms (ER while on vacation and had to have catheter put in for urinary retention). We told the Uro at that time that my husband's father had Pca. After that my husband went through almost two years of painful and not successful urinating, many antibiotics, self-catheterizing, 4 ER visits due to urinary retention, fevers, etc. Uro kept saying it was just enlarged prostate- finally my husband told him he couldn't continue self cathing 3-4x a day (at 49 years old) so we pushed the uro in to doing a TURP. Routine tissue biopsy at hospital (done with every tissue removing surgery routinely- not ordered by uro) diagnosed stage 4 gleason 9 metastisized to spine, local lymphs and pelvic bone.

The Uro STILL did not do PSA- even after diagnosis. He put my husband on bicalutimide (150 as opposed to the 50 now given), gave him an onc name (not even a pca onc), and told him that vegan may help. It wasn't until we saw an oncologist 2 weeks later that we got a PSA done and it was almost 700. Who knows what it was before bicalutimide. Personally, I think the uro did that on purpose to try to get PSA down before it was tested.

I def agree with every comment here- should not be your focus and cannot waste time on negativity. But at the same time... more needs to be done by these urologists for earlier detection if possible. PSA test is simple. Do it as soon as symptoms may appear. And def tell the patient the results!!

Also agree that research needs to be done to find Pca before it is stage 4 and metastisized.

For us... in past 15 months since diagnosis my husband has been on lupron, 6 rounds of Taxotere, now Zytiga +Prednisone. PSA has gotten as low as 10.7. Now 12.5.

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lincolnj8
lincolnj8
in reply to pakb

So glad he's doing better. Better standardization is needed. No guesswork

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Break60

Mine did a test every year and I still had gleason 9 ; go figure.

1 like
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lincolnj8
lincolnj8
in reply to Break60

Wow!!

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WSOPeddie
WSOPeddie
in reply to Break60

Gleason 8. PSA 2.7.

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Wdoug
Wdoug
in reply to Break60

Same here.

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Brbnbrn
Brbnbrn
in reply to Break60

Wish we would've been told when his was 9.... just always knew that if there was an issue with routine bloodwork, docotr's office would call and let us know. No trust anymore!

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tallguy2
tallguy2
in reply to Break60

Everything here and the comments above support the need for research to intercept the PCA before it is no longer encapsulated...before it becomes Stage IV in particular.

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Blueslover

Totally understand your feelings on this.

My annual PSA tests were done, but after I was diagnosed and looked back at the figures, the PSA velocity had been out of normal range the year before I was referred for biopsy.

Now I'm dealing with Stage IV mets 10 years later and ADT. Who knows what the situation would have been had I had my surgery a year earlier.

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lincolnj8

Medical mistakes at our expense. No uniform testing. Now I fight this every day.

1 like
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Break60
Break60
in reply to Blueslover

I had the same question when psa jumped from 2.7 to 5.4 and bx revealed gl9 . But surgeon said it had probably been percolating for 10 years and when it broke though the gland into SVs it suddenly took off. I still would have liked to have discovered it when it was contained but who knows when it really broke through? It is what it is.

Bob

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Brbnbrn
Brbnbrn
in reply to Blueslover

Exactly our deal... plus, we LOVE the blues. Who's your favorite?

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Blueslover
Blueslover
in reply to Brbnbrn

Too many to mention.

Luther Allison?

Was secretary of the local blues club for 25 yesrs

1 like
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Brbnbrn
Brbnbrn
in reply to Blueslover

Us too.. Taj Mahal, all Delta, BB (early years), Charlie Musselwhite, here is a tribute to our best friend who passed away a few months ago.. well.. I can't figure out how to post a clip, but it's worth looking up, "Please Remember Me".

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monte1111

When I retired at age 66 I had to get a new Dr. He even remarked to me that he wondered why my last dr. (of 17 years) hadn't been giving routine blood tests. Ordered blood tests. PSA came back 30.1 Surprise, surprise, surprise.

1 like
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Brbnbrn
Brbnbrn
in reply to monte1111

OMG! Geesh... what routine incompetence!

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Gertgert

Your situation happened to my husband and based on this post has happened to a lot of other people as well. I was very upset but you can’t go back you can only go forward. Focus on the good things. Life is precious and each day is a gift so please enjoy every day.

3 likes
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lincolnj8
lincolnj8
in reply to Gertgert

Yes it is and plan to enjoy each day, thank you for your post

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Wdoug

More than a couple good years!

1 like
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AAhealth

Men diagnosed with advanced prostate cancer and their families must be able to communicate openly with medical professionals when there is a delayed diagnosis. Medical professionals need to recognize that this honest communication results in improved medical care. Early screening and detection saves lives. Public Health initiatives work. The medical profession can improve their best practices based on a critical reflection on their own success rates in detecting cancer. Let's turn our grief and anger into advocacy and save lives.

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Brbnbrn
Brbnbrn
in reply to AAhealth

Unfortunately, many times change happens through litigation...

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WSOPeddie

Do some primary care physicians (PCP) just stop learning after med school? I realize how good my PCP was. He was scrupulous in subjecting me to DRE's starting in my 40's. When he saw a pre-cancerous spot (I live in Phoenix) he broke out the liquid nitrogen. So he wore urology and dermatology hats and who knows how many more.

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j-o-h-n

My original G.P. took PSA tests but never discussed the results with me. He retired to Costa Rica and my new G.P. reviewed a new PSA test of mine and sent me to a Urologist. Bingo!!!

I did not retain an attorney to sue my original G.P. I just killed the son-of-a-bitch. LOL 👺👺👺💀💀💀

Good Luck, Good Luck and Good Humor.

j-o-h-n Sunday 11/11/2018 5:26 PM EDT

A shout out to the U.S. Veterans of our Armed Forces.

2 likes
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Brbnbrn
Brbnbrn
in reply to j-o-h-n

Little scary... were you black ops?

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j-o-h-n
j-o-h-n
in reply to Brbnbrn

nope... my wife is.... LOL

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/11/2018 7:06 PM EST

A shoutout to all the Veterans of our U.S.A. armed forces.

1 like
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monte1111
monte1111
in reply to Brbnbrn

Thinking j-o-h-n was pee yellow ops. By the way my dr. of 17 years never gave me a DRE. Guess he was shy.

1 like
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WSOPeddie
WSOPeddie
in reply to monte1111

A few years ago my new doctor (new insurance) seemed to be shy too. I had to get on his ass for him to, well you know.

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Caring7

We had a very similar frustrating situation. My husband also looked great, excellent health. Age 52. DID have a PSA (on the high end for his age but within general normal BUT see below). DID have a digital rectal exam that showed "heterogenous prostate" - attributed to one-side being "hypertrophic." No recommendation to see a urologist, keep an eye on it. No big deal. Husband was on a hair-loss drug that interferes with PSA results (show lower than they are) - rx. from same doctor. At 51, I urged my husband to ask for the colonoscopy for screening that is standard practice at age 50.

All he had to say was "Hey, probably nothing, but maybe you should see a urologist."

Less than a year later - diagnosed with Stage IV cancer, distant bone mets. Note -- in the interim he had a spinal MRI for nonspecific back pain and they MISSED THE MET (that even I could see on the radiograph later).

Lesson: Be your own advocate always. And tell every man you know over 40.

We seriously contemplated a lawsuit and talked to people we trust (not yet to lawyers). Consensus was that this is "negligence" and that is really hard to prove. And then there is all the stress associated with a lawsuit, that really, a cancer patient and his family donʻt need -- for something that is in the "gray zone" legally if not medically.

We still get mad if we think about it 4 years later. You have a bigger gripe, I think, being in your 60s and never having a PSA -- thatʻs pretty lame on the docʻs part. But . . . learn from this and question everything you get from doctors and listen to yourself. Not just to question everything but to be in charge of your own care and your own body.

So sorry to hear this happened to you but glad you are getting good results.

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ctarleton

I feel empathy for those here who are among the relatively small percentage of men with prostate cancer who were diagnosed with Stage IV prostate cancer at initial diagnosis. I was one of them. I had a DRE and a normal PSA test at age 52 when I was with a large HMO in the USA. Afterwards, the HMO stopped general PSA "screening" of the entire male population, probably for a combination of reasons, involving internal considerations, but also largely upon the recommendations of the US Preventative Services Task Force. Note that "screening" of the general population is very different from "testing" of men who may already have a history of such things as prior symptoms, a family history, etc.

Anyway, in my particular case, I had no other PSA tests recommended by any of my doctors, and when I was 65 years old in 2013 I was suddenly diagnosed with painful, very metastatic Stage IV PCa and a PSA of 5,006, treatable, but ultimately incurable.

Could my life span have been longer had I been detected at an earlier stage? In an individual case, it's possibly impossible to say with certainty. Could I have been "over-treated", and incurred harms from earlier worry, risks from biopsies, side effects from surgeries or radiation such as urinary incontinence or earlier erectile dysfunction? Yes, that might have happened, too.

Although all these "shoulda, woulda, coulda" ruminations and angers about the past went through my heart and mind during the first year after diagnosis, eventually, it seemed to help me to let go of most of it, and get on with Living in the present moment with the re-arranged priorities in my life, and whatever I needed to do for my searches and choices for best treatment options. My energies are better spent in more positive ways.

For anybody who might be curious for a look into the detailed workings for the USPSTF Recommendations for Prostate Cancer PSA Screening, here's a link or two:

uspreventiveservicestaskfor...

uspreventiveservicestaskfor...

Whether for general population "screening" or specific individual/cause "testing", a PSA test result is only one factor.

BTW, just this month, I am a 5 year survivor with my Stage IV prostate cancer. Xtandi is still working pretty well, and my PSA is around 2.2. A pretty lucky guy, despite it all.

Charles

1 like
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lincolnj8
lincolnj8
in reply to ctarleton

Wow, glad you're doing well. I'll take 5 years. Year one is next month at Christmas..

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HiddenThis reply has been deleted
lincolnj8
lincolnj8
in reply to Hidden

Went to the hospital twice. Bruising, Coughing up blood, couldn't breath, and dizzy. Did a cat scan on my head. gave me pills for vertigo and sent me home. 3 weeks later back in the hospital getting blood etc. These aren't neglectful doctors, just incompetent. Glad to be alive..

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VHRguy

That "wait till 55 for PSA screening" position may have cost me dearly.

My GP ordered a PSA test when I was 45 as part of a physical, back in 2002. They called me, let me know it was at 5.0, and I should see a urologist. Had no idea what "normal" PSA even was. Anyway, over the next 3 years I had 3 biopsies, ultimately only finding some inflammation in there. The PSA leveled, declined to 1.8 after a couple more years.

So around then is when cautions were surfacing about PSA screening. Don't check till 55 they say, so, since mine was low I didn't have it checked until then. It was about 4 years with no check on it. And at age 55, it came in at 4.1. Hmm, doc says. Let's check in 6 months, since history of variable levels. So then, 5.2. Hmm, doc says. That's over a two points per year, so maybe see a uro.

Uro does biopsy, calls me the next day with results. Not good. A couple more tests, turns out G9 in half the cores, some 5+4, PNI, and MRI says locally advanced cT3a. Uro says "I'd have liked to have seen you 6 months ago.". Yay.

[Edit: math]

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lincolnj8
lincolnj8
in reply to VHRguy

Wow, that's crazy. Never had a PSA test. Never knew what one was. Went to the doctor once twice a year. Bloodwork for a physical. Felt great until a month before being hospitalized. Timing on our PSA tests? I'm lost. Hope your fight is a good one.

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Borntopaint

My husband's company Dr. use to do a PSA every year. Somewhere along the line they stopped. It didn't occur to my husband until he was dx with stage 4. I too was angry with his work place. I blamed them. At that moment I needed someone to blame. Our oncologist said the only thing he knew for sure was Roundup causes it. The Roundup lawsuits began and my husband contacted an attorney. The didn't feel he had a case. I guess I finally processed all of it and that combined with his remission led me to just accept that it is what it is. He worked around chemicals at an oil refinery for nearly 40 years so who knows? I still get a little crazy as his PSA test rolls around but so far so good.

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strummer

I’m a wife who is livid that my husband never had a PSA test. Had symptoms and was followed by 2 urologist. He is 66 and now stage IV Mets to bones. they changed the recommendations to stop PSA and now younger men are dying . Shame on medical society .

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boc13

We were in a similar situation. Sorry you’ve had to go through this. The disease is bad enough but to find out it was missed or could have bee detected earlier is horrific. My husband was 49 years old and had been having DRE from age 40 by his primary care. Never did a psa. He found out when he had routine cyst on his testicle and I insisted he go to a uro-oncologist even though it just a hydrocele. We were dumbfounded when the onc called and said comeback and found his psa was almost 70. When he did DRE exam, he said the whole left side of prostate felt like mush. Final Gleason was a 9/10. We were dealing with a lot before his diagnosis. We said we would revisit a lawyer looking at records

Down the line. I was furious that a doctor would do a test that he was completely unqualified to do. And on top of that doing a DRE and no psa. My husband has had an uphill battle. It is now in bone and nodes. I did contact a lawyer about 2 years and 3/4

And it was too late for them to take it on. So if you are thinking about it, get a legal opinion and you can make a decision before the deadline is up. I think it’s probably been more peaceful not suing and we don’t think much about that anymore because we have so much going on here just dealing with his day to day care and all the side effects of surgery radiation and treatment. So I think we made the right decision. But I think you need to explore so you don’t regret it later. At least you’ll know you did what you needed And made an informed decision. Don’t dwell on it. Live your life. Your alive and doing ok. Take it all in. My husband had 5 or 6 decent years before it went into bone. And another few before nodes. Enjoy what you can when you can and make a decision that you can live with. Good luck on this journey.

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Peterd110

How about my doctor DID do PSA test In March it was 9.2, but he failed to inform me. My PSA had always been within normal limits, so unfortunately I just took his word for it when he said, “Everything looked good! Call me if you need anything.” ...... Well 5 months later a trip to the ER in the middle of the night with severe back pain revealed a new PSA of 352. Went to him the next day, and he had the nerve to tell me that the cancer had probably been there for a long time anyway. WTF??!!???

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fredallred

same thing happened with my husbands doctor, until I insisted. I am glad you feel great, your treatment is now his new treatment, he was only on Lupron after his surgery and it is not doing the trick anymore.I ma looking for a financially viable option for Zytiga, I can't believe the drug companies can charge so much, but someone will be working with us. Thanks for the info. God Bless...

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lincolnj8

I live in the U.S.A. retired (mandatory to have a prescription drug plan) and that plan pays for it. Also there are foundations (my doctor set it up) where there is financial help if your yearly income is below a certain level. Also it is available out of India for about $100 a month (believe that the site is on Facebook) Others get it from there and say it's great. Cost was recently cut in half due to competition (in America) around $5,000 a month. Also was cheaper out of Canada. Good luck shopping and wish you well. And remember to have a nice bowl of ice cream. Lincolnj.

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HPpurple

same with my S. O. GP never gave him any PSA test. His old Urologist performed 2 unsuccessful turp procedures , never gave him a PSA test nor DRE . S. O is not a "should have, could have " kind of guy. Initially , I had wanted him to sue both his Urologist and GP but then it would not erase the fact that he has PC stage 4 in lymph nodes and bones. I just hope for him and the rest of the folks here will fight this beast and kill the damn cancer!

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lincolnj8
lincolnj8
in reply to HPpurple

Yeh, suing your doctor is a lost cause. Around 2011 the AMA was telling the docs that unnecessary PSA testing was resulting in a lot of unnecessary procedures that were found to be costly. Therefore PSA testing was not being done by many doctors. Observing the health of the patient and doing the "finger" exam was all that was done for many. I had yearly extensive mandatory company physicals, plus yearly physicals from my general practitioner. It's all about the money. I believe that a cure for this slow growing cancer is coming soon.

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Urang

What happened in the past, that ship has sailed. While you have time live your life to the fullest! Can you survive this? Yes, for a time anyway. I have made it for the last 20+ years.

2 likes
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lincolnj8
lincolnj8
in reply to Urang

Wow 20 years, that's encouraging. Have a great day

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Urang
Urang
in reply to lincolnj8

There have been some bumps along the way, but I don’t live for the bumps. I try to enjoy the good days as much as possible. As time goes by, those days are fewer but then there is today. Today I put a smile on my face, don’t complain about anything, put the “discomfort” on the back burner for today is my 51st anniversary. At times we think about ourselves and don’t think about those around us and how hard it is on them. Carpe diem…

1 like
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lincolnj8
lincolnj8
in reply to Urang

You are so right, the ones around us suffer too. And sometimes we forget that.

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Break60

You should be upset! The problem is proving damages. I had somewhat similar issue . My doc did Psa but didn’t know that finasteride caused Psa to fall by half. At least when it doubled he brought in a urologist who found PCa.

You have a stronger case I believe.

If a lawyer takes it , it will be on contingency so he’ll only take it if he can win a good settlement.

Bob

1 like
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lincolnj8
lincolnj8
in reply to Break60

I understand that the AMA back in 2012 told doctors that too many PSA tests were resulting in high medical costs and unneeded procedures. In other words PSA testing was cutting into profits and the stock holders were unhappy. I met with a lawyer and he said that "I looked too good" to file a claim. Also from what I've seen on this site, going after the doctor is a waste of time. Yes, I received yearly physicals for my family doctor and also from work. Yes extensive blood work from both. Also never needed any meds for anything. Was told that I had PC for 5 years. Then the treatments started. I'm going to enjoy my life now and not spend my last years in a courtroom.

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Cisco99

Me as well. Doctors had a period where they did not do the finger-poking test, because they knew they were getting way too many false positives. They honestly did not know what to do. Urologists welcomed theses cases and made tons of money doing unnecessary surgery. Primary care doctors stopped doing the test until they figured how to make the procedure work. That's why my doctor missed diagnosing me, 8 years ago and again 5 years ago.

I understand, but I wound up with an incurable disease because of this hesitation.

1 like
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lincolnj8
lincolnj8
in reply to Cisco99

My doctor did the finger test one year before I was diagnosed. I had already had the cancer for 4 years. No PSA test though. Never.

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Cisco99

I now see everyone has said the exact same things as me! My first day here, learning the ropes.

1 like
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lincolnj8
lincolnj8
in reply to Cisco99

So much good info and support..

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