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New and Overwhelmed

Jjb-54
Posts: 7
Joined: Jul 2020

Please forgive the double post ... I was unaware that you can start your own focal point post ...

Prior Post:

---------------------

I am 65 years odd.

PSA - 10.5

Had a Prostate Biopsy- 2 Error, I hit the wrong key - 5 Lesion of 3+3=6 Both were " Prostatic Adenocarcinoma Gleason Score 3+3= 6 out of 10

I'm getting "mixed messages" .. it's not serious to "you are on the precipice" of concern.

They threw out Surgery - NOT a big fan of that just yet, 2/b honest. As I told the doctor I've just had too many surigeries on my body, so unless it's a HAS TO BE DONE NOW ... I'm not ready."

The "Seed Implants" are out of the question, in that I am apparently allergic to the Pre and Post Op meds that are "required".

I just went in today ( Tues ) for a CT PRE VOLUME STUDY.

I know that my body has never been "Text Book", as I say I'm in the TEXT BOOKS and my body does not play by the rules and if something strange can happen, it usually will.

So how serious is GLEASON 6? 

Can I do Active Monitoring?

How fast, if at all does GLEASON 6 grow to > than 7??

Thanks! This is a whole new world and I'm trying to do my best to know what is going on and what I need to take seriously and what my options are?

... Jj ...

End of Prior Post.

Further Details.

The Cancer Lesions are located:

  • LEFT APEX Gleason 6 of 10
  • RIGHT APEX Gleason 6 of 10
  • RIGHT ANTERIOR Gleason 6 of 10
  • LEFT ANTERIOR Gleason 6 of 10
  • RIGHT MID PROSTATE Gleason 6 of 10

... Had a CT Scan Tuesday - Pre Volume Study.

 

FIRST - Thanks Dave 4+3 for you prior post!! Thanks so much.

 Now I am overwhelmed as I have been going through a whole lot of data.

1st I'm reading Gleason 6:

* ".. not really cancer, so don't worry .." to, from a Urologist Doctor's page: " ... if you are told you have cancer with a Gleason score of 6, get out of there and find a real doctor ... "

* " .. Gleason 6 is cancer and be aware of those who say it's not ... "

* " Prostate Cancer growth very slowly. "

 And yet I've read 1st hand posts of where men went from Gleason 6 to 7 - 9 in matters of MONTHS 6 - 8. That seems rather fast? 

 I've had a long history of surgeries that were " .. never seen this before .. " and so on. Basically I tell the doctors, " I am anything but textbook. I am in textbooks." Yes, I am, 4 different medical papers have been written about me over 40 years. But that is another story.

 So here are my first question, to those who have or had PC of Gleason 6, how " concerned " should I be?

 Even my doctors Urologist and Oncologist are sending mixed messages.

... " I am on the precipice and need to make some hard choices ... " to " ... Active Surveillance and wait it out ... "

Any extra thoughts you guys have would seriously be appreciated, please.

Admittedly, I understand, apparently that if one has Radiation Therapy, Prostate Removal is OFF THE TABLE. As prior stated, I'll do the surgery, but only if at Gleason 6 of 10, there is just no other choice and it has to be done. ( I am basically tired of surgeries 2/b honest. )

Again, appreciate any thoughts as I plod my way through this. 

Thanks one and all for understanding and taking the time to read.

... Jj ...

hopeful and opt...
Posts: 2262
Joined: Apr 2009

Many medical professionals do not consider Gleason 6 to be a cancer. A Gleason 6 will not leave the Prostate, so many men with low volume of Gleason 6 are simply monitored (Active Surveillance) instead of seeking active treatment such as surgery or radiation. I am one of these men.

The problem is that when there is a lot of Gleason 6 that is found there can be Gleason 4s hidden in the Prostate. 

More information from you is required in order those of us who post here to provide information to you on how you stand. We need to figure out how much  Gleason 6 is in your prostate ; that is how extensive the Gleason 6’s are

Of the cores that are positive how much, that is what percent of each core is positive and how long is the cancer in each core. Any other if pathological findings. Basically share your pathological report with us

what did the digital rectal exam reveal...finger wave

pls share your psa history

any other diagnostic tests...ie mri, etc

Any other pertinent information

 

 

ASAdvocate
Posts: 139
Joined: Apr 2017

Hopeful and optimistic has asked the necessary questions, but I will add one more. Was there an MRI before the biopsy, or was it a systemic (blind) procedure?

The reason you hear of someone having a low risk biopsy, and then a high risk biopsy or post-RP report is not becasue the cancer grew fast, but because the first biopsy missed the more serious lesion(s).

As h&o said, the concern with a lot of Gleason 6 is that there is an increased risk of higher grade cancer that was not sampled by the biopsy needles. So, the percentage of cancer in the cores is important.

I've never heard of a CT scan for a "pre-volume study". What is the reason for that?

Jjb-54
Posts: 7
Joined: Jul 2020

I'm going to try to answer both posts w/1 post.

1st. I had a Prostate Biopsy done in 2016, because the doctor was "concerned", my PSA went from low 4.x to 7.x 

He ordered an MRI than and there were lesions. He was not overly concerned but wanted to get a "Base Biopsy" so to speak to establish where we were. Based on the Biopsy than, negative with anomalies that could turn cancer. 

... Over the 4 years from 2016, my PSA climbed until it reached 10.1 for which than he ordered another MRI. The lesions had grown and a couple of news ones were in this one.

... He than strongly suggested another MRI - Infused Prostate Biopsy and core samples were taken.

... The Core samples ranged from 10% to 25 % and one was 50%

After the 2020 Biopsy, Doctor stated, "Okay, you have Prostate Cancer ... but it's low risk." But he sent me to the Hospitals Prostate Cancer Care Oncologist / Radiation Therapy.

Here I was told a basic message of "Don't worry ..." to literally saying, "You are on the precipice of being serious." ??

As stated one of the therapies: Seed Implants, I am unable to have, because I am allergic to some of the Pre & Post Op medications.

I was handed a print out from: NCCN - National Comprehensive Cancer Network and was told I was in the "FAVORABLE INTERMIDIATE RISK GROUP".

So that left 2 options on the table:

.... Removal of Prostate.

... An external Radiation Therapy. Not the Seed Implant one. ( NOT Proton )

 

.... The "Pre-Volume Study" CT Scan was to see if I can have the External .. bone and physiology were going to work.

Basically if Dr. Alex Hsi, pronounced " C " ... says I'm not a candidate for that, the Surgery is apparently the only option available, which again does not excite me, at this moment. But than, it would seem the choice has been made for me.

At this point, I'm seriously leaning towards Active Surveillance .. because I'm being told - Don't worry, it does not grow that fast ... and yet I'm reading some similar reports from my OP.

Now even two close friends went through the same " growth spurt " and they have friends too. Where it was G-6 and 1 went to G-7 in 3 months, the other G-8 in 5 months. So it would seem, even in my ' small circle ', wow, and if it's because other " cancer cells were hiding " .

Sorry, I'm really just trying to wrap my brain around all of this and was not allowed some time to " decompress " ... than late yesterday I was told I have ".. Several Complex Renal Cyst .. "" in my L-Kidney and apparently that's a "FLAG"... So much for having time to decompress! . o O ( Sigh ... )

Hope this helps?

>> THANKS SO MUCH!! From all that I have read this is an amazing group of guys!  Cool

Clevelandguy
Posts: 583
Joined: Jun 2015

Hi Jj,

Both John Hopkins and the American Cancer Society consider Gleason 6 to be a cancer but a very mild form.  If it was me at 3+3 I would monitor the cancer with biopsys and see if the Gleason score changes.  In the mean time I would be studing the different treatment modalities in case it takes up a step to 7 so you are ready if needed which hopefully will not upgrade. A PSA of 10 is kinda high but could be BPH related if you have that condition. My biopsy was relatively painless with very mild discomfort for a couple of days after.  I have included a couple of links which talk about the Gleason scores.

https://www.hopkinsmedicine.org/brady-urology-institute/specialties/conditions-and-treatments/prostate-cancer/prostate-cancer-questions/good-news-for-men-diagnosed-with-gleason-7-cancer

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html

Dave 3+4

hopeful and opt...
Posts: 2262
Joined: Apr 2009

In most Active Surveillane programs, a PSA under 10 is part of the criteria...this varies for some, where a higher PSA is acceptable for AS.

There are various reasons, other than PCa why a PSA can be higher; first, men who have larger prostates have higher PSA's....because the prostate lays on the uretha, so more PSA is secreted. Since you had an MRI, the size of your prostate will be stated( cheeck out the number)...second, PSA is higher after sex, bicycle riding or even a hard stool...Since PSA is an indicator only, one needs to look at the trend of PSA's, not one observation.

I suggest that you ask your doc to provide a FREE PSA in addition to the PSA's that you receive in the future.

About 30 percent of those who are candidates for Active Surveillance as you appear to be, drop out because the low level cancers that are exhibited are actually wolves in sheeps clothing, but in a well managed Active Surveillance program, you will know where you stand, and will be able to seek the treatment choice that you initially would have without adverse consequences. During the time that you are being monitored, your quality of life will be better without experiencing the potential side effects of active treatment. As clevelandguy mentioned, you will have time to research and determine the best treatment choice for you.

.......................

Treatment choices. There are treatment choices in addition to the ones you mentioned....various forms of radiation to include, but not limited to SBRT of which cyberknife is one of the machines that deliver, proton, etc, etc...at any rate you have time to research.

Jjb-54
Posts: 7
Joined: Jul 2020

I just had another blood draw today:

PSA 11.0 and Free PSA 8.3

There has been another "Monkey Wrench" thrown into the equation that my Doctor is going, "Only you, Jj ... only you." With in 3 months my L-Kidney went from 1 Simple Renal Cyst to July 23 ..."Several Complex Renal Cysts." So now we have to find out if they are in the cancer stage or not ... ??

Oh, the joys of getting older. But I'm only 65 years odd .... :P

hopeful and opt...
Posts: 2262
Joined: Apr 2009

As your doctor indicated, these numbers are not favorable. There is a good chance that something is going on. You mentioned that you had a MRI. The MRI lists what is called a PIRAD that on a 5 point scale indicates the likelihood of finding significant cancer. What was the score. Was the MRI a 1.5 Tesla or 3.0 Tesla magnet. The 3.0 is better able to detect extracapsular extension, that is if the cancer left the prostate.

Previously you mentioned 3+3 in three cores. You did not say anything about any other findings in the pathology. Was there anything unique.

Also ples comment on the findings of the digital rectal exam finger wave.

There are various tests to see where you stand. There are various gene tests on the market that take samples of the biopsy results to see on a molecular level how aggressive the 3+3 really is.

Did your doctor have any thoughts about the next step.

I‘m sorry that you are going through this aggravated by the other issues that you are dealing with. 

It will be taken care of in a positive way as long as things are done in a coordinated way

Best

 

 

ASAdvocate
Posts: 139
Joined: Apr 2017

I'm a bit more conservative about AS when there are more than three cores involved, especially one with fifty percent involvement. I would be thinking treatment if I were you.

Since you aren't enthusiatioc about surgery, why are your being told that your other options are limited? Does high dose rate brachytherapy use those drugs that you are adverse to; or are they only used for low dose (seeds)?

Why is proton beam therapy beinjg ruled out? That has great results, and protons centers are rapidly multiplying. Was only IMRT offerered? Whar about SBRT/Cyberknife? That also shows impressive results, and only requires five sessions.

And, some men are happy with HIFU and the new TULSA-PRO protocol. Those appear to have few lasting side effects. You want to find the treatment that you are most confident with, even if that means seeking another provider that offers it.

Jjb-54
Posts: 7
Joined: Jul 2020

ASA - Basically I was told the "Seed" treatment was off the table. 

Oh, they could do it, but it would involve staying the in hospital overnight to insure no reactions ( something about one or more drugs specific to "seed implant" ) The techno jargen went over me. The Doctor just told me, some of the meds for that specific treatment I am allergic to, thus it would be best if it's off the table. I had to agree.

We will be looking at other treatments on Aug. 10. I see Dr. Alex Hsi ( "C" ) and will go over the options. 

I'm 65 years odd, as stated and have had more surgeries since I was 20 years odd than I care to list. So I've gotten to the point that unless I'm told YOU NEED THIS ... I hold off. I'm just tired of surgeries and this one seems to hold on longer than 1 - 2 years side effects, than I want to deal with, unless I'm left with no choice. Than the choice is made for me. :P

Also, which is not listed ... part of the "cloud" is that with my last Colonoscopy, there were too many pulups that were borderline on the cancer side. Instead of the 5 year bump, they had to bump me to 3 years. I have one next year. IF that's cancer ... than apparently the situaion gets "complicated" ... so I am hearing it might be best to wait until after the colonoscopy to see what that shows?

I have 2 Challenges thrown at me ... and being reminded things like this come in 3's. :P So, NO I'm not excited if a 3rd hardball decides to get thrown at me. 

VascodaGama's picture
VascodaGama
Posts: 3224
Joined: Nov 2010

JJ

Prostatic cells classified as Gleason score 6 (3+3) are cancerous and need to be treated as much as those of higher grades.

Gleason rate 3 cells that compose the score 6 (3+3) have infiltrative characteristics which makes them quite aggressive in comparison with those of lower rates of 1 and 2, that show to be more uniform, similar to normal cells in structure. Cells classified with higher rates of 4 and 5 are poorly differentiated signifying that they have lost most of the characteristics (structure) of a typical cell. These produce lesser PSA serum but maintain the aggressiveness in multiplying and invading neighbor tissues.

Accordingly, Gleason score 6 is seen as lesser aggressive than a Gleason score 7 (3+4) but this Gleason grading system only refers to the patterns of the cells as they look under the microscope. The aggressiveness of a cancer regards more to its ability in multiplying and the speed it takes in invading neighboring environments. Not all Gleason rate 5 are super aggressive and not all Gleason rate 3 are indolent.  In other words, a cell could have the same pattern (for instant Rate 3) but it could have more infiltrating skills than other of similar rate, therefore being more aggressive and in need of faster treatment.

The issue made several pathologists to try creating newer systems (in 2006) to be more precise in identifying aggressive cases Independently of cell’s pattern. The result of such commitment led to abolishing patterns 1 and 2, grouping these into grade 3. Logically such created classifications of Gleason scores 6 made up of rates 1 or 2 which would be lesser aggressive than a Gleason score 6 made up of rates 3.

The aggressiveness of cells is now contested by its genomics. There are Gleason rate 3 cells verified as indolent but there are also rate 3 cells identified as progressive. The genomic test is useful to those aspiring AS because it can help in judging how aggressive the cancer is showing to be at each time these patients get a biopsy.

The AS regimen requiring constant tests and biopsies that are needed to verify if the previous Gleason rates are constant or if higher rates (tertiary) have been found, or if the cancer has grown and occupies now more areas in the gland. Fortunately to all us, the cancer seems not to progress in rate such as 3 to 4 or 4 to 5. Up to today no study has yet verified that cancerous cells change their DNA when dividing.

The high PSA is reasonably accepted to exist because you got a voluminous cancer (5 positive cores out of 10). Gleason pattern 3 cells also produce plenty of PSA serum. In your shoes I would get a second opinion by a pathologist on the biopsy cores to verify the grade of tertiary patterns. You can also request that the pathologist gives you the real Gleason pattern of those that probably have been upgraded from 1 or 2 to 3.

You can read my comment on the same matter in this link;

https://csn.cancer.org/node/319598

Best wishes,

VGama

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