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Diagnosed with Prostate Cancer, Gleason 6

Flyer83948
Posts: 6
Joined: May 2019

Hi-

    After getting two successive high PSA results within a short time (a 4.7 and then a 5.5 about 3 months later), I had a prostate biopsy done and received a Gleason 6 score with six of the fourteen cores showing positive. I'm 59 years old. In googling information for 'Gleason 6' on-line, I see that there is a bit of disagreement among urologists about how significant a 'Gleason 6' score is in regards to 'aggressive cancer' versus 'indolent cancer'. I was thinking that due to the fact that prostate cancers tend to develop slowly and I have a Gleason 6 that I would be a candidate for the strategy of "active surveillance" but to my surprise on speaking with my new urologist on the phone for the first time, he seems to be leaning strongly towards stronger measures than active surveillance. 

    Of course I'm not asking for official medical advice here and I will be getting 2nd and maybe even 3rd opinions from urologists if my primary urologist advocates something like a prostatectomy, but I would like to know how much variability there is in the opinions of urologists concerning the treatment of a Gleason 6 condition like I have. Should I expect a wide range of different views from urologists concerning how the various treatment options of Gleason 6 should be weighed? I know that this is a gray area and that there is some degree of disagreement among urologists, but I'm trying to get a sense of just how wide of a range of opinions I should expect when I start seeking more professional opinions from urologists.

-Thanks,

Sam

greenteaguy
Posts: 18
Joined: Feb 2019

Hello Sam

I am at almost the same stage as you with five Gleason 3+3 and one Gleason 3+4.  After an MRI and bone scan my urologist and I agreed on AS.  My biopsy specimens will undergo an Oncotype DX test this month which I hope will confirm the decision.  If your new urologist is against further testing then I would ditch him/her immediately.

I think the ultimate decision is whether you feel you can live with cancer in your body.  I decided I can for two main reasons.  Many oncologists argue that our stage may not really be cancer given that it is highly unlikely to spread. Second I feel that my cancer is a symptom of a diseased body, consequently since last July I have taken measures to greatly improve my lifestyle with good results.  I believe I can overcome the cancer and view it as a personal challenge.

Flyer83948
Posts: 6
Joined: May 2019

@greenteaguy

Thanks for the input. Yeah, the question is whether one can live with cancer in one's body. I guess the way I rationallize it is that of all of the 37 trillion cells in the average human body, that ALL of us probably have at least a few errant cells which could be classified as cancerous but they go undetected because they never grow large enough to be a noticeable health problem. So having cancer or not having cancer is not truly a binary state like 0 or 1,  or "yes" or "no", but more a matter of degree. As an example of that, I remember reading that many men who lived long lives and then had their prostates examined after death actually had cancer but that they never knew it because their cancers were so slow-growing and remained undetected. I guess that sometimes ignorance is bliss. So would it have been better if I had never had those PSA blood tests taken which showed unusually high results? I honestly don't know.

VascodaGama's picture
VascodaGama
Posts: 2929
Joined: Nov 2010

Flyer,

Welcome to the board. You are doing well by researching about the problem. I believe that AS is the best option we PCa patients can have if the conditions are proper. In any case, some guys think on AS as an escape to a treatment but the truth is that AS is a procedure done pre treatment that follows a strict regimen of actions. The benefit of AS against a radical is the assurance of less invasive intervention that reflects in fewer risks for nasty side effects. AS should be seen as an option in the care of prostate cancer, that may fail just like any other intervention. It can last a life time or it can do well for a period postponing a radical treatment doing it under a certain control.

Not every case can follow AS in its ultimate goal but the option provides time to the patient to become knowledge on the matters of treatments, risks and consequences. While on AS one will follow any progress doing periodical tests and exams and will intervene timely, now better equipped with the latter tools that moved up from the drawing boards to real action.

AS is not practiced equally by all doctors or at all medical centers. There are standards for acceptance by the doctor which lead many to not recommend. Being a Gleason score 6 is not enough. The percentage in each core and the number of positive cores may negate a recommendation, as well as it does a negative DRE and high PSA.
Apart from that, Gleason score 6 varies much. A case diagnosed with a lower score of 4 or 5 is now graded 6 to follow the 2005 standards, introduced and imposed by the Urological Associations around the world. Those standards have eliminated Gleason rates lower than 3, turning the rate 1 and 2 into a 3 (therefore; 1+1=6; 1+2=6; etc). My diagnosis in the year 2000 was a Gleason score 5 (2+3) but it was later in 2006 upgrade to Gleason score 6.

Probably if I have been diagnosed today some doctors may have been tempted to recommend me AS, however, even with a lower rate of 2+3 (5) I had all cores positive (voluminous case) and a very high PSA (22.4 ng/ml) which lead to surgery that failed. I needed later salvage radiation and ten years later I had to start hormonal treatment.

In your shoes I would do extra tests before deciding on anything. The Genomic test recommended by the Greenteaguy can help you in the decision. A second opinion on the biopsy slides is also a good step forward to confirm the rates and at the same time have the opportunity for requesting for the real Gleason pattern. Pathologists differ in their interpretation of what they read under the microscope tempting them to give 3 to all that is not considered a 4 or 5. A detailed request will get a higher inspection of the cores.

Best wishes and luck in this journey.

VGama 

greenteaguy
Posts: 18
Joined: Feb 2019

Thank you for sharing this interesting information I was not aware of.

"Those standards have eliminated Gleason rates lower than 3, turning the rate 1 and 2 into a 3 (therefore; 1+1=6; 1+2=6; etc). My diagnosis in the year 2000 was a Gleason score 5 (2+3) but it was later in 2006 upgrade to Gleason score 6."

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3181
Joined: May 2012

To all,

Another factor that must be carefully monitored is your Doubling Rate, also known as PSA Vector.  After a positive biopsy, this can be almost as important as Gleason.  Doubling Rate requires frequent PSA draws (from the same lab) and intelligent analysis.  Results that are too close together in time may skew the interpretation inaccurately.  A plotted trend over time, and consistency in vector are the most accurate.  As Vasco noted, Gleason and even PSA itself are not always perfect bellweathers of what is going on.  At times, a low PSA will be the most aggressive forms of PCa malignancy.

Yet another factor to recall is that PCa biopsies tend to underestimate cancer involvement much more often than that they are simply 'accurate.'  The only way currently to "absoultely" know a precise Gleason is to undergo R.P. and have the pathologist cut it up in a lab.  Often, even today, a good multicore biopsy will detect NO cancer present at all, when in fact some, or even a significant amount, is present, and at various Gleasons.    When I had my first biopsy (MRI-guided), the gun "broke" on the 12th, and last, core.  The doc said we could skip it, or wait to repair the gun, which took about 5 minutes. I waited.  The results came back positive in only one core, the 12th. And, it said Stage 1.   I had DaVince R.P. a few weeks later, too soon for much to change, and the pathologist showed that it was actually a significant case of State 2 disease. Hence, in my case,  I was very nearly told I had NO PCa at all, when in fact I was Stage 2.  These sorts of stories are not uncommon here.

It seems to me there is an "Unspoken Premise" (logical assumption) present in this, and most, AS discussions.

That premise is that "A Gleason of 6 is Always Going to Remain a Gleason of 6."  Such is NOT my undestanding of how the pathology evolves, and I have seen no proof to that effect presented here, ever.    Related to this is the fact that a very high percentage of the men here who are on HT due to metastatic disease, and even men who have died, wrote that they were first diagnosed with "Gleason 6." Read their histories. 

The idea that Gleason 6 cancer never becomes metastatic or kills is proven false daily throughout the US, where 30,000 men die annually of PCa.

To me, AS is whistling in the dark, a pipe-dream.   But I'm glad it is available as a modality, and that many men have success with it.

Flyer83948
Posts: 6
Joined: May 2019

@VGama

Thanks for all of the information. As for Gleason 6 score not being enough for an active survellance strategy to be recommended, and that having many positive cores (6 of 14 in my case) negate an active survellance strategy, I've seen that view expressed several times but it has always puzzled me. If Gleason 6 is indeed an 'indolent' type of non-threatening cancer, then why should it matter how much of it is observed in the prostate? It seems that these is an unspoken and unwritten assumption or belief that although Gleason 6 in itself is non-threatening that there is some correlation between the appearance of Gleason 6 regions in a prostate and the appearance of more threatening cancers. What's I find interesting though is that, again, that assumption or belief seems to be an unwritten one. I have never actually come across any medical literature or medical essay that says anything like "Although Gleason 6 itself is indolent and non-threatening, its appearance in a prostate is often correlated with the appearance of more threatening cancers in a prostate".  Is this sentence in quotation marks true or not? 

VascodaGama's picture
VascodaGama
Posts: 2929
Joined: Nov 2010

Greenteaguy and Flyer,

The Gleason score is a grading system devised by a pathologist called Dr. Donald Gleason, an American pathologist, who, in the decade of the 1960th created a scale giving rates to cancerous cells. The division was done from 1 to 5 according to the pattern of each cell. The aggressivity was then classified by a score of the two types most prevalent in a piece of tissue, from 2 (1+1) to 10 (5+5). At the time not all individual clinical institutions accepted the grading but in time a great number of phisicians started using the scale. In 1992 the International Society of Urological Pathology was formed and took control over the norms regulating pathological affairs providing guidelines to the many. The first grading took place in 1998 and that was then revised in 2005 in particular with regards to the aggressiveness found in each rate (1 to 5). Some low rates cells presented higher aggressiveness even with the pattern of a benign cell. That was when the newer Pseudohyperplastic Adenocarcinoma was introduced. This type of cells resembles benign hyperplasia but some pathologists classified it as Gleason rate 1 or 2. In fact not much consensus has been drawn from the findings and many doctors never reached to such details when seeing the cells under the microscope.

Accordingly, saying that Gleason score 6 is indolent is not true if the cells present similarities to a pseudohyperplastic type. I would accept such indolent term if the pathological analysis has been done to the full extent recommended by the ISUP, including the mention on the lower grades of 1 and 2 (a complete report).

Please refer to the following links regarding my subject;

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791407/

http://www.pathologyoutlines.com/topic/prostatepseudoCA.html

https://www.auanet.org/education/auauniversity/education-products-and-resources/pathology-for-urologists/prostate/adenocarcinoma/prostatic-adenocarcinoma-gleason-grading-(modified-grading-by-isup)

https://www.ncbi.nlm.nih.gov/pubmed/27415753

https://isupweb.org/isup/

Best,

VG

 

ASAdvocate
Posts: 108
Joined: Apr 2017

I have been on active surveillance for ten years, and have had no progression in my disease. My recent MRI and biopsy are the same as in 2009. But, while I have enjoyed those years of living normally, I have also been frequently tested within a formal study group.

With your number of positive cores, you would not be accepted into the AS program at Johns Hopkins, but you would be welcomed into our long-time rival program at Sunnybrook. That is Laurence Koltz’ research group. You can google him for a lot more information.

I recommend that you get a copy of Dr. Mark Scholz‘ new book The Key to Prostate Cancer. In it, 30 prostate cancer experts describe the treatment, including AS, that they provide for men with different risk levels.

Flyer83948
Posts: 6
Joined: May 2019

@VGama

Thanks for giving a good, succinct overview of the Gleason grading of prostate biopsies and providing some insight about what is going on in regards to Gleason 6 scores and "indolent" cancers. I will be reading through the links you provided and thinking about this some more.

@ASAdvocate

Thanks for the information and for your recommendation of the book by Dr. Mark Scholz. Looks like it has excellent reviews. I just now found it on Amazon and downloaded it to my iPad. 

greenteaguy
Posts: 18
Joined: Feb 2019

I regularly watch the Dr. Mark Scholz (Prostate Cancer Research Institute) You Tube videos.  He is excellent.

https://www.youtube.com/watch?v=sKY-Hd8s4nM

Grinder
Posts: 433
Joined: Mar 2017

Flyer...

Whichever approach you take, particularly AS... begin to research the expertise and surgical record of the surgeons and radiation oncologists in your area. You have been blessed with time... in case you do need RP or RT, you want the best available. It will make the difference between butchering your nerve bundles or mistargeting radiation, or any number of side effects that can happen with inexperience. 

Btw the best surgeons in your area will be the ones with the most backlog too. But about the time you need to make a decision about treatment, you should casually start looking into surgeon records in your area. DO NOT just get passed off to the "next in line" surgeon. Your urologist may belong to a clinic, and he will try to pass you off to the next guy in line at the clinic.

My advice, instead, is to find the best and have your GP schedule surgery if you ever need it.

Funny thing about Da Vinci RP... a classical old school surgeon is not necedsarily the best at it. Da Vinci is a different animal than open surgery. 

Who would you rather have pinch hitting for you? Babe Ruth? ...or your wife's cousin's friend who played in a church league for a couple years? Why would anyone regard cutting up their business downstairs any different?

Checking the internet for sites that rate the surgeons/oncologists in your area is a good start.

Flyer83948
Posts: 6
Joined: May 2019

@Grinder :"Whichever approach you take, particularly AS... begin to research the expertise and surgical record of the surgeons and radiation oncologists in your area."

 

It seems that that's easier said than done. I tried googling the names of some of the urologists in my network, but information is scarce. I've looked at various sites which claim to provide doctor ratings, but there are either no reviews or at most one or two reviews on the urologists who I've looked up. And it's not like I'm out in some remote area of the country. I live in the San Francisco Bay Area with a major health care provider (Kaiser), but still public information about the doctors is scarce. I suppose that I'll just have to ask my urologist face-to-face how much surgery experience he has when I meet him next week.

Flyer83948
Posts: 6
Joined: May 2019

@greenteaguy

Thanks for the video link, greenteaguy!

greenteaguy
Posts: 18
Joined: Feb 2019

You are welcome Flyer.  Dr. Scholz has posted a very informative video about HIFU treatment.  If the need arises I am leaning toward this treatment over any other.  The problem is it may not be covered by medical insurance while surgery and radiation are.

Almondfarm
Posts: 1
Joined: May 2019

Yesterday I was told that my biopsy from a TURP surgery has a Gleason 6, however, my PSA is 1.4.  The doctor wants to do another biopsy in October because he wants my TURP surgery to heal first.  So I am just waiting for 6 months and am in a lot of emotional pain now.  Any comments are welcome.

 

Thank you

MK1965
Posts: 158
Joined: Jun 2016

same happened to me. Had TURP for bladder neck obstruction to relieve my urinary retention. Turp was done on 6.1.16 and pathoogy l came back positive for prostate Ca. Had biopsy on 8.11.16 which confirmed Ca but higher Gleson 4+3 (55% pattern 4).My highest PSA was 1.85 and my base PSA was 0.52 at age 45. At time of biopsy, was 0.7 and that was after Turp.

It was removed 8 grams of prostate tissue during Turp.

I had RP on 11.2.16 and my Gleson was downgraded to 3+4 ( pathern 4 was 40%)

MK

greenteaguy
Posts: 18
Joined: Feb 2019

Prostate cancer is very slow growing and a 1.4 PSA is well below the threshold of a 4, so I wouldn't worry.  Your condition is highly unlikely to change in six months and I think the doctor is doing the right thing.

VascodaGama's picture
VascodaGama
Posts: 2929
Joined: Nov 2010

Almondfarm

PSA =1.4 and Gleason score 6. These are the parameters of low risk cases. I understand you being in emotional pain for the positive result of the biopsy but prostate cancer got many ways to be dealt with in successful manner. Each step must be followed and your next one is a complete analysis (biopsy) of the whole gland. The worse is done which is to know that we got cancer. Now we need to find what is the clinical stage to choose a treatment.

What is your age? What made you to do TURP? Was there any difficulty in urination?

Such symptoms are usually linked to BPH not cancer. Let's wait and be positive.

Welcome to the board.

VG

 

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