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.
Age matters too. From your profile photo, you look like a young man with a lot to live for. In your case, choosing an active surveillance approach "probably" gave you better years to enjoy, rather than impaired quality of life. Damn thing about all this is we'll never know if we made the "right" choice. We can only be sure that we made a choice that we can live with, no matter what the outcome.
I think the earlier the treatment the better. The best thing is to be treated before it spreads outside the prostate. I don't know your case but mine had already spread by the time I found out I had prostate cancer. Take care.
If you know a lawyer that strongly believes that earlier treatment is always better for aggressive cancer, please have him or her contact me. I would have a case, if not for the theory that Gleason 10 always spreads, regardless of when it is caught.
Hello Wonderful Father of Twins! I have just now signed on to this website. My husband had a similar situation. PSA went from 2.0 to 3.5 within 11 months back in 2009. Family doctor's Physician Assistant told him not to worry, but to return in 4 months. I knew nothing about any of this. Insurance changed so husband had to begin with a new doctor. His first visit to the new doctor was about 9 or 10 months later than the other doctor visit . . . and yes, my husband was foolish to let it go that long without being checked. I still was not aware of any problem, until he came home and said his PSA was 20.4 ! Gleason turned out to be 4+5 when all of the testing began. My greatest desire is to find out WHY the P.A. did not suggest that my husband be referred to a urologist, or at least have him return in one month to recheck his PSA. I have been furious, to say the least. I spoke with several attorneys, but due to my delay in getting started with a case of medical malpractice, it was too late to do anything about it. I have so much evidence proving that the P.A. was very negligent, and so was the primary doctor for not supervising his P.A. more closely. Sadly to say, I lost my precious husband this past October, but he put up an amazing fight for over 5 years. He had so many different treatments, but at last the pleural effusion around his lungs from the chemo took him from me. I pray for good success with any treatment you try or any clinical trials, and I would like to keep up with how you are doing via this website. Thank you for being the fighter you appear to be, for the sake of your wife and twins. God bless you.
I think it is a "standard of care" issue. It is a simple factual question: what was the medical thinking at the time, and was this course of treatment outside that? If so, were you made aware of that, and did you consent to it...
You need as an expert an oncologist. You could use someone who sets the NCCN guidelines, and he/she would say - year that was what we thought at the time, or no that was unacceptably sloppy.
Your lawyers opinion on your medical treatment is no more relevant than your accountants opinion.
If your cancer had been caught at its earliest development (a Gleason Score of 3+3/6, the cancer may have been eradicated with treatment. Yet, with this insidious men's disease we can never be certain about anything. A very good plus in your case was the joy of the birth of your twins. Downside, of course, if the subsequent apparent aggressive development of your cancer to then be diagnosed with a Gleason Score 10. I do hope you are currently receiving aggressive treatment.
My oncologist said that an individual's Gleason score is constant. If it's a 10, it was always a 10. I would love to see a research paper saying otherwise.
All the agressive treatments have failed, so far. I am on my third clinical trial.
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Have you had Proton Radiation Therapy? I had gleason 3+3/6, PSA 4.9, had 39 Proton treatments and at 3 months PSA was 1.66 and at 6 months later PSA 1.0. Have had bone scan and nothing showed up. Go back in 6 months for year check up. Am firm believer in Proton Therapy. I was diagnosed April 2015 and started Proton Treatment in mid June and finished mid Aug. Was suggested to wait and watch which I could not do, turned 72 right before treatments started.
Proton therapy wasn't available nearby when I had IMRT. The IMRT seems to have succeeded in stopping growth within the prostate bed, but radiation won't fix the metastatic part.
It is silly to say that a person's Gleason score never changes, except to the extent that the Gleason score is assigned at biopsy, and that generally happens once. But people who have 3+3's on biopsy, and decide to wait, can get a different Gleason on a subsequent biopsy, or why do a subsequent biopsy? Occasionally the Gleason score changes after prostatectomy when it can be based on the entire prostate, rather than on the original very small same that is taken in a biopsy.
To say your husbands gleason was always 5+5 is to say that he had 5+5 cancer as a baby. Silly.
yes that seems nuts - that the grade of the tumor never changes. I will accept that the score is done by biopsy, and many people do not get a second biopsy.
The logic of active suerveillance belies that 10 is a 10 idea, (or 6 is a 6).
If a 6 always stayed a 6, why look every six months.
If diagnosed initially with a Gleason 10, then yes, it will always be considered a 10. But if diagnosed at its onset of development it will more likely be Gleason 6. As that development continues with the patient unaware, it can then move upward to 3+4/7, 4+3/7 4+4/8, 4+5/9, 5+4/9, and finally 5+5/10 wherein it has undoubtedly migrated beyond the gland and its periphery to metastasis to bone. You did not "suddenly" have a cancer presence of Gleason 10. Your cancer started development at extremely low grade - like the advent of anything - but with you unaware of its development, by the time you did become aware that development had progressed aggressively to your 10.
We learning of your status would appreciate learning more of the treatment and medications you have been prescribed to date, as well as the medication in the current trial.
Hi can u pls call me asap at 714 310 5717 my name is joe I have the same thing u do let's exchange info plus I'm your age I been looking for someone like u thanks
I also was on propecia for several years before my prostate cancer diagnosis at the age of 43 in 2002. I always wonder if that was what caused the cancer to develop since I am otherwise healthy and have no cancer history in my family. Also, Propecia is known to manipulate PSA values.
Bauxman, I too am a Gleason 10, I find it is fairly rare. I was diagnosed in 2006 with a psa of 148 and widespread metastatic disease at 49 years old. I am still here and Doing fine, It has meant constant treatment. Currently on xtandi. Will you have to pay for the combo xtandi and zytiga in trial?
I hope I can be a message of hope to you being a fellow Gleason 10
The Xtandi manufacturer is providing that drug for free, since both arms include it, but the Zytiga manufacturer didn't like the design of the trial, so my insurance company is paying for the Zytiga, IF I get into the arm that has both.
Hi Dan59, You are a true inspiration for me. I was recently diagnosed with advanced PCa with spread to my bones. I have just turned 49, I would like to hear your story. I am overwhelmed but optimistic about my future.
Paul, My story is that I was diagnosed in early June of 2006 with Gleason 10 , bpsa 148.6 prostate cancer that had spread to my bones and Lymph nodes, I was devastated. I began to read all I could about the disease, I found a Dr who specialized in Pca at a nearby teaching college, and He was able to work with my local Oncologist. I have been on Avodart from the get go, also zolodex, some time on nilandron , ketoconazole, estrogen , all at different times, my psa would go up a little and go down a little, my original scans showed widespread metastatic disease, I tried not to believe it, knowing I had lived a somewhat reckless life with motorcycle crashes and ski accidents, and knowing that arthritis or degenerative bone disease shows about the same on a bone scan, I have never had a clear bone scan or a clear cat scan, I have never achieved and undetectable psa through therapy, yet through the grace of God I am still here, Currently almost 3 years on xtandi, MY expert Oncologist tells me there are new drugs in the pipeline , we just need to hang on, I still have chemo, both docetaxol and Javenta in my back pocket.
The issue surrounding Gleason grade migration is an important topic since so many men want to do active surveillance (AS). AS requires a low Gleason Grade and a man needs some assurance that their Gleason will not morph up to a higher grade.
What seems to be the real problem isn't that the Gleason grade morphs to a higher number, but that in some instances the biopsy misses the cancer that is already more aggressive as demonstrated by a higher Gleason grade.
So, in Beauxman's situation his Gleason 10 was a Gleason 10 and probably did not start out earlier as a 6 or some other number.
The question for men in his situation is more if the cancer still remained in the gland at diagnosis could earlier treatment have changed the course of the disease? Of course, with a higher and more aggressive Gleason number the changes are more significant that the cancer was out of the gland despite any negative scans.
Huh? You say "So, in Beauxman's situation his Gleason 10 was a Gleason 10 and probably did not start out earlier as a 6 or some other number. " Come again?
I believe Chuck is correct on a Gleason migrating from a lesser number, all it refers to is how poorly differentiated the cells look under a microscope, and as time goes by these cells become more poorly differentiated. The problem is for You as it was for Me, Men under 50 were not tested for PSA in the past, and it has shown up in much younger Men, we used to say testing should begin at age 40 and in the case of African American Men it should begin at age 35, sadly The American Cancer Society has determined in an effort to save Money there is no need to routinely test these Men, which undoubtedly will bring back the days of Men presenting with advanced disease , to save men who may never die of their prostate Cancer from going through overtreatment.
I just read your post and my Father also has a Gleason grade of 10, he was diagnosed in 2012 with stage 4 at the age of 60 . His doctors also told him that his Gleason was always a 10 and he probably had it for years, unfortunately his cancer had already escaped the gland and started to exhibit painful symptoms at the time of diagnosis.
I can tell you that my Father is still with us today and very active as far as exercise.
You are young and I think you will respond well to treatment.
What I have learned about cancer at least Prostate if you stay physically fit and eat the right diet you will do well with less invasive treatments. The Doctors believe this is why my Father has done so well with only hormone therapy for all these years.
In my opinion, prostate cancer does not suddenly appear as a Gleason 5+5/10. It doesn't just "BAM" and suddenly appear as Gleason 10 in the prostate. Like the growth of a baby in the womb, it starts a beginning development process. If the cancer is extremely aggressive in growth and proliferation, only then could that growth be sufficiently excessive and extensive to rapidly rise to Gleason 10 and then possibly be present in the man for some period of time before the side effects of such advanced cancer become evident and the man is found with the top level of prostate cancer. It is refreshing to learn of these posts of men who have been successful in the treatment of their very advanced Gleason 10 prostate cancer at diagnosis, and does provide hope for others only recently learning of their advanced prostate cancer. I see it very good for our new friend Beauxman to learn that he is or will be in a trial testing Xtandi/enzalutamide in company with Zytiga/abiraterone acetate, or even if his arm turns out to be just Xtandi since either should play a significant role in reining in his cancer for hopeful long term management.
Do continue to keep us posted Beauxman. We wish you the very best and will continue to be here to help address questions/concerns. In what part of our nation do you reside?
I forgot about one, so actually, this is my fourth clinical trial.
Thanks, maack1, for sharing your thoughts. I live near DC, so a bounce around between Johns Hopkins, Georgetown University and NIH, depending on what each has available for me at the time.
Everyone is missing the point, in my opinion. The decision is OR SHOULD BE mine to make, not some doctor. I was in that same position and my GP did the same damn (intentional cuss!) thing for 7 years. My Gleason did not change over the years, but the extent of disease did, ending up at >>50% in all cores (one side) when finally biopsied.
And, while GS may not "get worse" as the extent of disease becomes greater, the significance of a secondary grade may become more extensive and more easily detected. 1% of a 5% of one core is a heck of a lot different than 1% of 55% of a core.
19 yrs later I'm still fighting the disease, albeit a GS6, but with a 3 mo PSADT. Lots of money spent on Lupron and other drugs Maybe because of one doctor's mistake.
Don't give up. Do research and look at all the options. Ty Bollingers book is a good place to start to learn about alternative approaches. There is lots of information out there. The problem is, there is no current way, for a given patient, to know which treatment will work. It is a bit of wheel of fortune. I literally pray to be shown the right path. I am doing blood ozone treatment, developed in Europe and used there for decades, but used by only a few doctors here. A vegan diet helps, and there are lots of supportive supplements. Best wishes to you
Not quite sure what you mean by "Gleason grades do NOT migrate." I expect you mean the grades do not elevate, but if so, that makes no sense at all. You even state a 4+5 can change to 5+4 to 5+5; That is certainly grade elevation. You will have to show me the evidence of which you speak that indicates that all-of-a-sudden cancer cells blow up with no beginning in a man's prostate gland with a sudden Gleason Score of, for example, 5+5/10. That just does not occur. A patient may not be experiencing any effects indicating he has a problem wherein there is cancer that has started development possibly several years earlier from a basic cell embryo and has continued in development wherein he finally has a PSA test and/or DRE examination that identifies cancer cell activity. We often see men who are following their development with either Active Surveillance or even with some basic treatment wherein their Gleason Score is changing because of the continuing cancer cell proliferation (and the "differentiation" of which you refer). As these cells proliferate and differentiate, if looked at under the microscope, they can, if not treated, "migrate" beyond the gland into seminal vesicles or adjacent lymph nodes; the reason why men are found to learn their cancer has increased in cell proliferation and tumor development that has already metastasized by the time a biopsy identifies the prostate cancer activity.
The fundamental question is, if I had gotten a biopsy in 2007, rather than 2014, is there a good chance that I currently would not be castrate resistant with bone metastases and have a far greater expectation of life?
Following on with the discussion of Gleason Grades, if cancer not treated, climbing.
In checking with a pathologist friend the questions asked of him were:
Me: In evaluating cancer cells under the microscope, can cells graded 3 later develop, become less differentiated, and change to grade 4 or 5?
Pathologist: Yes, the grade can change from 3 to 4 or 5.
Me: Put in a different manner, if a man initially received a biopsy and his prostate cancer is graded as 3+3/6, can those same cells graded 3 change as they develop to become grade 4?
Pathologist: Yes, again.
Me: There is discussion going on wherein some men are claiming that prostate cancer cells that are graded 3 never change from being 3. The same goes for cancer cells graded 4, or graded 5 - they always remain that grade and do not change. A doctor told a patient his Gleason Score of 10 “was always 10.”
Pathologist: A Gleason score of 10 is the highest possible (i.e. the worst prognosis). If at diagnosis your cancer has already progressed to Gleason Score grades 5+5/10, you have that Gleason Score for the rest of your life.
Pathologist continues: Not so simple with a score of 6; many men with a score of 6 will, over the years, experience an increase in the score (but NEVER a decrease).
Me: My argument (and that is why I am asking your advice) is that every cancer cell, when it begins its development would likely start at grade 1, but as it continues in development - and if not suppressed from that development - it becomes less differentiated and can become grade 2, then grade 3, then grade 4, then grade 5
Pathologist: There is at present no way to know whether all PCs start as a 1. But it is true that in some men the grade goes up over time. And it would be nice to know at the outset whether one’s 3 will become a 4. There are molecular tests being evaluated as possible predictors.
Me: Does any of the foregoing make sense?
Pathologist: Your questions always make sense. The use of one standardized system (Gleason) means that PC is better managed than, for example, breast cancer where you have at least four popular grading systems. Always good to hear from you.
In the papers you reference is the statement “Lavery and Droller(25) posit that Gleason patterns 3 and 4 represent separate cancer diatheses, and the faster proliferation of pattern 4 compared to 3 may explain the apparent evolution of pattern 3 to 4. Different risk factors (genetics or environmental) may lead separately to the development of Gleason grade 3 or grade 4 disease. (Please note the words “may explain the apparent evolution of pattern 3 to 4.” - again “evolution of pattern 3 to 4”).
In fact, the entire study alludes to the fact that they cannot rule out that tumor patterns (Gleason Grades) can progress from one pattern/grade to a higher one, though they feel that even if they can, they do not do so on what could be considered a routine basis. Actually, rather than concern about grade increase from one to a higher is secondary, since the study is dealing more with the patient whose Gleason Score remains stable over time without grade increase that then enables better management of that patient’s cancer.
I give up. Until you name and quote the eminent physicians that may prove my pathologist - the specialist who actually reviews prostate cancer cells under the microscope - wrong, I will stick to my opinion and let readers come to their own conclusions. I agree to disagree.
My suggestion to you, ardee, since you are using their names, is that YOU contact each of those physician of whom I am well aware, and get them to confirm, specifically, that cancer cell Gleason grades do not change under the microscope from 3 to 4 etc. over time if left untreated.
Cheers Dan, I have already decided not to take any notice of the stats. I live in hope that we can all keep fighting and living until the 'crack the cure' as I think this is one disease they will certainly find a cure for one day, hopefully in time enough for us all to benefit.
I hear you. My primary wasn't alarmed nor did she send me for a biopsy even though my PSA began rising a year before I noticed blood in my semen. She was fully aware that my father died from the same cancer as well as uncles and cousins. Of course it was too late and now...following surgery I am dealing with metastatic, hormone refractory, aggressive pc
I heard you say something about elevated PSA. How about DRE? Were you ever given a digital rectal exam during all this time? If not, that truly would be malpractice in my non-medical opinion. My PSA was a non-alarming 2.7. The DRE turned up a problem and I was immediately referred to a urologist. A biopsy confirmed the cancer. Good luck with your travails.
Two urologists gave me DREs. The first, in 2004, said I had proctitis. The second, a few months later, said the first was probably wrong and it felt normal.
I had a good primary care physician who sadly passed away a few years ago. He gave me a DRE with every annual physical going way back when I was in my 40's. I wonder if primary care physicians are not performing this test? It is well known that many men are ashamed to submit to this test. Does this same inhibition apply to doctors too? It better not -- they should insist on it.
Long interesting discussion. Ok, a Gleason 10 can't change, but a Gleason 6, or 7? Guys keep saying 'they change from a 6 to 7 or higher.' NO! That tissue removed by biopsy stays the same, but the next biopsy, x yrs later WILL get a different sample, and it may be a 7, or higher. Also, if there was lots of Gleason 6 tissue originally, it was much more likely to be "caught" than Gleason 7, the Gleason 7 may have been invisible: 1 in 10 vs 1 in 10,000? Which are you going to spot? Then we (my docs) treated the cancer, but really only treated the Gl 6 (responsive tissue). Now Gl 7 is much more visible, standing there alone. That's how I see it anyway.
In fact, after seeds and XBRT in '98, a biopsy in '01 showed "bizarre tissue suggestive of Gl 7" BUT IN A COMPLETELY DIFFERENT PART OF THE PROSTATE! Did the first urologist just miss it? Or couldn't he see the one tree in the forest? Besides that I do have/had an enlarged lymph node called suspicious. My psadt remains short 16 yrs later.
I just finished IMRT and brachy. Will follow up with less intensive pelvic IMRT. With Gleason 8 and one bone met, 2 more indeterminate areas awaiting more scans, I figure I may benefit from early aggressive treatment. Being tossed a small rope with Lupron and additional wait-and-see was not an option I was willing to accept. I was refused brachy and triple blockade ADT in Canada, despite increasing evidence that early aggressive treatment results in better outcomes, and outright cures for some. I personally know 3 guys who went this route, some with Gleason 10 and PSA in the thousands, but stage 2-3, who are cancer free 10 years on. No reputable clinic offers cures, but accepting "standard of care" without considering options, especially those which have benefitted others, is naive and possibly fatalistic.
What is triple blockade ADT? I'm in Canada also and am on Firmagon with RT planned. I'm high risk with spread to pelvic LNs. Thanks.
I disagree with your doc.
I realize that this is an old post, but it was posted before I came on the forum and I just saw it. You are correct, in the vast majority of cases it doesn't make a difference. It's funny because my primary care doctor said this exact same thing to me years before I was diagnosed with stage 4.
I probably could have had surgery or radiation 10 years ago and had recurrence and be in the exact position I am in now. Only I would have 10 more years of side effects on top of stage 4 now. For every 1000 people screened, 1 life is saved at a cost of 30 over-treatments. I guess I could be that one, but not likely.
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