The above picture was taken last year almost to the day in Orange Beach, Alabama. I remember the day vividly. My wife and I went to the beach and for almost every minute of the day construction vehicles were working and making noise just outside our condominium. It was comical how loud and persistent the noise and activity was. BP was paying money for the clean up and Orange Beach was using every penny of it looking for tar balls. We would see workers shift sand all day and from what we could tell from our balcony and on our walks very little was being found. It looked very “governmental to me.”
Anyway, just before I had left Gainesville a patient who had been diagnosed with prostate cancer with a high Gleason score had had a bone scan. I was concerned about it. The patient and his wife became “office friends” of mine and in fact the wife was so kind to drop off several excellent cakes to my office as a thank-you for our help in his case. The cakes were so good that my wife, who loves to cook, said ” I’ll never cook another cake again. I’ll just get these.”
While at the beach I call on several occasions to get the report of the bone scan. My nurse read me the report as I watched the heavy equipment move sand in front of the beach.
“Wide-spread metastatic bone disease consistent with known history of prostate cancer.”
“Damn it!” I was sick with the news. I called the wife and gave the news and arranged for the couple to come to the office to discuss the findings, the significance and our plan going forward. I arranged for the patient to go by the office and get a LHRH shot and called in Casodex.
That was one year ago. He passed away this week. I loved him and you would have too. Man the man loved to work. He went to work with crutches toward the end. His wife came by almost weekly for a prescription for Oxycontin, the only thing that allowed him to go on. I never heard him complain. His wife was absolutely beautiful through the whole thing. I am sorry Bess (my daughter says I mention Frank Zappa too often) but it was Frank Zappa, Dan Folgelber, Ablin’s father all over again.
How is it in today’s world, the internet, prostate cancer month, Movember that someone presents too late to cure of prostate cancer?
If this patient had had a PSA several years ago would that have made a difference? Or stated differently…at what point would a PSA and knowing that this patient had prostate cancer would it have made a difference? What do the epidemiologists of the world have to say about this class of patient?
A frequent commenter to this blog I bet has some thoughts on this and we should listen to him.
Keith…are you there?
Prostate Diaries 
I’m a member of this club and I would sure like to hear some opinions. Can a patient like this be saved with timely intervention?
Mark L.
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Can a patient like this be saved with timely intervention? Who knows? Perhaps this man had such an aggressive cancer that it would have taken his life no matter what test was done. But, this patient aside, the real question has already been asked and answered on this blog a thousand times. Does PSA testing for early prostate cancer save lives? OF COURSE IT DOES! Perhaps not every life, but despite its limitations it still seems morally reprehensible for any competent physician or health group, including epidemiologists who want to save tax dollars, to “un-recommend” this important test. After all, it is essentially a man’s first line of defense against a significant killer. And, even if PSA testing doesn’t save a given life per se, its assistance in an early diagnosis will almost certainly decrease the lengthy pain and suffering that comes with advanced disease; suffering that robs so many men of so many good years. There is a travesty going on in the world of PSA testing, and the more we spread the word the sooner it will be corrected.
Jack Brown
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Hi John and everyone I hope the whole world take the time to read your post.
To set the scene this has ben a great weekend for me as my youngest son and his wife presented us with first grandaughter Lily Adelphia.
Now why is that important for me well Im a guy with metastatic prostate cancer who was diagnosed in ignorance with a terminal illness thanks to a dear friend who said GO get a PSA test, I was getting old (in my 50s!!!).
She may not have saved my life but she gave me a gift no drug will ever create.
Now I plan my life by setting myself goals that do not exceed 3 months.
Do I have quality of life? You bet your life I do in fact I consider this is to be one of the happiest periods of my life. I do not hide away from my prognosis and even my 9 year old grandson is proud to go to school and say that his granddad has prostate cancer.
How could any Urologist or Oncologist ever understand what it means for a man to live with prostate cancer unless they live through the experience.
Urologists treat our cancer but who treats the whole man?
What does my Urologist know about me? He knows my PSA score my gleason 9 score, the lymph node involvement but he doesnt know I love my four kids (3 sons and a daughter), soccer, wine , champagne, fish food and holidays.
No two men (people) are the same but we should be given the chance to know about any illness that may affect our lives and to decide if we want to be treated or not. Quality of life has nothing to do expensive drugs or trials its all about how we function around the ones we love.
Thank you John
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This type of scenario happens too often. It is so frustrating and tragic to lose a friend.
Physician feels a lump on the DRE and this is a bad sign. You want to, I’m not sure what! It then becomes “if only” he’d listened earlier to all of us and stopped “futsing” around. We can only hope that the treatment works. So we sit with our hearts in our mouths as the months go by and the PSA behaves. There is always that anxiety lurking in the background.
Gentlemen get that PSA and DRE done as you really don’t have much choice if living is important to you.
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Since PSA the percent of men found at initial diagnosis with metastatic disease has fallen from nearly 30% to less than 2% and the death rate has fallen 10% despite increasing incidence. PSA is the only explanation. A PSA is knowledge, yes not every elevated PSA needs a biopsy and not every prostate cancer needs to be treated but you can make an informed decision unless you know what’s there. This patient was unfortunate but I have one that I reference frequently. His PSA was 2000 and he had all Gleason 10 with a bone scan where his entire skeleton was positive. With hormonal treatment his PSA became <0.1 and he died of some other cause 12 years later. Give the decision back to the physician and patient not in some governmental beaurocracy
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Well stated. I received an email yesterday from the AMA president asking me how he could be of help to me. I dropped my membershipa after the AMA supported national health care. What a mess it is going to be and all the PSA stuff is in anticipation of the government “rationing” health care and specifically tests like the PSA. JM
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Does low-grade prostate cancer need another name?
http://www.ourlab.net/pen
Jon Oppenheimer, M.D.
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I have “localized stage 4 prostate cancer”. it was discovered early but clearly not early enough. that was two years ago and I was off and “running”. It was almost an accident that it was found through a biopsy of a lymph node. It was not found by a Urologist, nor several gastroenterologists, just one man who had the sense to pop me into an MRI. The sooner it is found the sooner one can begin the fight against it. I am sorry that most think that changing one’s diet to foods and phytonutrients that fight cancer is not necessary. That going to the gym, loosing weight and reducing stress wont give someone a better fighting chance! I DONT BELIEVE THAT WAY! Can it be any clearer? The sooner you find it, the sooner you can begin fighting!
mmiller
thousandfeathers.com blog about phytonutrients that fight not just prostate cancer.
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Reblogged this on Prostate diaries and commented:
Increased awareness and early detection is the name of the game for any cancer.
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I have a family physician who has been diligent in watching my PSA for a number of years. Following one small spike, she sent me to a urologist who suggested I continue my annual PSA tests as part of my physical. My FP noticed a large increase one year and put me on a six month follow up which showed another increase resulting in a near doubling over an 18 month period. Back to the urologist who recommended a biopsy that discovered my cancer.
In fairness, my cancer was discovered early enough with a Gleason Score of 7 and a rating in the low end of the moderately aggressive range that I qualified for brachytherapy or active surveillance. I chose brachytherapy.
Now to the subject at hand in this post. As many people have noted, prostate cancer is considered/perceived as an old man’s disease and “most men die with it rather than from it”. This attitude in the general population has relegated prostate cancer to be considered no worse of an affliction than a bad cold. However, how many of you physicians have seen men in their 40’s with school age children, children in college, and a loving household who have presented to you with advanced prostate cancer?
We don’t live with any outward symptoms. We cannot do self examination for lumps to determine if we should get checked for something that may not be benign. (As my urologist told me, when he feels a lump, the cancer has already become a problem. A bit of a challenge doing a self examination of the prostate.) If we do experience symptoms such as trouble urinating, we write it off as “getting old”. We don’t develop a persistent cough, experience unrelenting, pain, headaches or other symptoms that may send us to our doctors and get further diagnosis.
Until such time as the main stream media, major companies, and well funded advocacy groups start to give the same exposure to prostate cancer as is given to the “pink ribbon” campaigns, we will continue to wait until it’s too late.
Nelson
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Here is an original thought for you; treat our dignity, modesty, and privacy with something other than empty platitudes. While I can’t speak for others, I think most men dread a visit to the urologist, even for routine screening. That, combined with the nearly universal all female ancillary staff, from the receptionist who insists we share the most intimate details of our lives as a prerequisite for an appointment, to the tech, seldom even a nurse, who records those same details in our records, all prior to even seeing the urologist.
In my case, I specifically selected a male Urologist. He stated a particular procedure was necessary, explained why and the associated risks; I consented. Instructed to strip from the waist down, he handed me a gown and stepped out of the exam room explaining he would be back in a few minutes. Sitting on the exam table having complied, imagine my surprise when he enters the room with a female tech. I asked having specifically chosen a male Urologist, why do you assume it’s okay for a female to be present without asking first? You would never expect a female patient to submit to an intimate examination or procedure with a male assistant without asking first, correct? He agreed. I expect the same consideration. You either perform the procedure without assistance or find a male assistant, otherwise I’m leaving.
Given the extremely personal nature of Urological care and the potential for embarrassment, why is privacy and dignity so callously disregarded on a routine basis for male patients? I understand the male/female ratio of nurses and assistants and the difficulties associated with same gender care. However, the failure to ask is presumptuous and unethical. Instead, providers in effect ambush patients into submissive compliance. Nude (gowned or not) in need of medical care is a difficult time to make a stand. Where is the informed consent? Frankly, the more troubling aspect is Urologists of either gender, are well aware of these issues, or should be, and apparently ignore them. This double standard needs to change for men to feel comfortable in seeking health-care! I’m convinced a significant percentage avoid needed medical care for this exact issue.
These are difficult issues to admit even to yourself, more so with your wife, and then we’re expected to share the most intimate details of our lives with multiple female strangers. No thanks!
Ed
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My oncologist told me that yes, my primary care doctor was negligent to ignore my elevated PSA seven years before my eventual diagnosis, but due to my Gleason score of 10, early treatment would have made no difference. I guess she means early treatment would have given me extra years of treatment side effects, but no change in overall lifespan.
It seems that, at least for prostate cancer, most cases are so mild that they will never cause death, some are so aggressive that they will kill regardless of treatment, and the ones in the middle, for which treatment actually makes a difference, are rare. That’s a really difficult concept to wrap my head around.
https://www.minnpost.com/second-opinion/2009/07/myth-early-detection
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