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Posted 8/26/2020 1:16 PM (GMT 0)
Hey everyone, been a while since I checked in here but I just had my second biopsy, roughly 18 months from my first. A year ago I had an MRI which came out lowest risk.

My results from the biopsy were again G6 but with higher volume than 18 months ago. I forgot to get a copy of the report but one area was 90% and I think there were others at 70% , 50% and lower (I'll post the actual numbers when I get the report). Also, I've had the office send the slides to Epstein for his opinion. My latest PSA was 6.7.

My urologist now recommends (radiation) treatment, and I may but want to be absolutely sure before I roll the dice with SE. My understanding of gleason is that G6 cannot metastasize, so if it stays G6, what is the risk of ever-increasing volume? My urologist said it can interfere with urinary function and require surgery (not necessarily RP).

So is this just a ticking time bomb that will eventually lead to G7 or can I continue with AS? I'm 71 YO.

Thanks in advance.
Posted 8/26/2020 2:28 PM (GMT 0)
Hi Vic,

Sorry your active surveillance may be coming to an end. There are two problems with "only" G6 disease.

The first is that -- while G6 lesions cannot metastasize -- they can grow out of the prostate locally: through the prostate capsule and form extracapsular extensions (ECE) or into the bladder. While not common, this is by no means rare.

Secondly, we know that PCa is a heterogeneous disease. If you look at the signature here in the Forum, you'll see that many men have biopsy reports with lesions that are a mix of different Gleason scores, including G6. So the concern is that in addition to putting out new G6 lesions, your PCa can progress to also create G7 or higher lesions.

Also, it has not been established how this progression occurs. One theory is that higher-grade lesions form ex novo from some precursor cell. Another is that when G6 cells multiply, a higher-Gleason tumor >G 6 cell can be created, giving rise to a new lesion (clone), and this clone could metastasize. And as the size and number of G6 lesions increases when PCa ramps up, it is reasonable to assume that the chances of disease progression increase.

If your docs tell you could stay on AS with little risk (which I doubt), I would not so do without ordering a genomic test (Decipher, OncotypeDX) on your biopsy tissue to find out it's metastatic risk (low, intermediate, or high). about 10% of G6 men have tumor RNA that is high risk for metastasis, that is of forming lesions >6 that give rise to metastases.

One other point. If, for the sake of discussion, you were to choose surgery, there is perhaps a 1 in 3 chance that the post-op path exam of your entire prostate would reveal that you currently have lesions >G6 that have gone undetected -- i.e. your definitive Gleason score would be upgraded to G7 or higher). That is the risk of staying on AS -- by the time higher-grade PCa is found, you may have missed the window of very early treatment. So a biopsy, which as you know samples just a tiny amount of prostate tissue, that comes back G6 does not rule out the presence of higher-grade lesions.

If a guy has a chance of putting of treatment for a number of years, you can make the case that treatments are always improving, and many AS men never have to treat. So delay has its merits. On the other hand, if your docs say you are no longer a good candidate for AS, then it just becomes a question of when to treat -- and that may just be a choice between, now and in near future. The "now" option can cut higher-grade lesions off at the pass, as they say in the Westerns.

Even if Dr. Epstein's review says there is nothing other than G6, I would give weight to you docs' opinion regarding the advisability of remaining on AS.

Hope that helps,

Djin
Posted 8/26/2020 2:59 PM (GMT 0)
And cautionary tale...I was diagnosed after biopsy with low volume G6. Turns out after surgery I was actually Gleason 4+3=7 and wound up getting SRT soon after. While all journeys are unique, I'm glad I took action.
Posted 8/26/2020 7:07 PM (GMT 0)
Vic i am guessing that the Dr is recommending treatment based on the volume of cancer in the positive cores?
Good that you are getting the second opinion from Epstein, and i agree with Djin, running genetics like Decipher would be a good idea and possibly help inform your decision.
Good luck
Posted 8/26/2020 7:15 PM (GMT 0)

Pratoman said...
Vic i am guessing that the Dr is recommending treatment based on the volume of cancer in the positive cores?
Good that you are getting the second opinion from Epstein, and i agree with Djin, running genetics like Decipher would be a good idea and possibly help inform your decision.
Good luck

Pratoman, thanks for the response. Yes, the urologist is totally concerned about the volume.

I'm actually moving closer to deciding on the RT based on what I'm hearing. Right now the slides (are they really slides like we had in Jr. High biology???) are being sent to Dr. Epstein, so I'll have to make sure they come back and then see how I can get the genetic test done.

But I guess that doesn't matter if I just don't want to be on pins and needles for years to come and just do the RT. It would be good to hear from men who've been in my situation and just stayed the course because G6 cannot metastasize, no matter what the volume. Maybe the worry about SE is worth the peace of mind to have the cancer reset to zero (or 1 cell smile and get 5 to 10 years before I have to be concerned about the PSA rising again...
Posted 8/26/2020 7:21 PM (GMT 0)

AZ Guy said...
And cautionary tale...I was diagnosed after biopsy with low volume G6. Turns out after surgery I was actually Gleason 4+3=7 and wound up getting SRT soon after. While all journeys are unique, I'm glad I took action.

AZ guy, good story. Hopefully you'll be good to go for a long time. This is soooo stressful trying to do the right thing.

Vic
Posted 8/26/2020 7:43 PM (GMT 0)

DjinTonic said...
Hi Vic,

Sorry your active surveillance may be coming to an end. There are two problems with "only" G6 disease.

The first is that -- while G6 lesions cannot metastasize -- they can grow out of the prostate locally: through the prostate capsule and form extracapsular extensions (ECE) or into the bladder. While not common, this is by no means rare.

Secondly, we know that PCa is a heterogeneous disease. If you look at the signature here in the Forum, you'll see that many men have biopsy reports with lesions that are a mix of different Gleason scores, including G6. So the concern is that in addition to putting out new G6 lesions, your PCa can progress to also create G7 or higher lesions.

...

Djin,

thanks for the information. I was sort of wondering if it could 'escape' as a G6 and you've answered that.

My urologist by no means thinks I'm low risk and he's adamant that I now undertake therapy (he's a cutter but realizes that when the time comes I prefer charged particles...)

The whole thing has become such a weight, with my wife saying that I'm gambling and should just 'fix it'. Sigh.

On the positive side, I've made all these lifestyle changes like vegan, exercise, fasting, meditation etc that make me feel great, though it hasn't slowed the G6 volume growth. But on the other hand, I like to drink beer so maybe that has and effect, who knows. My RO says that you can't eat your way in or out of cancer. I wanted to prove him wrong but the (lack of) results says maybe he's right. Maybe prostate cancer is different than other cancers, being a so-called hormonal cancer, what do I know?

Right now, like most everybody on this forum who's not still on AS, I'm at the crossroads. I appreciate the support you guys give!
Posted 8/26/2020 8:58 PM (GMT 0)
My biopsy showed two cores of low volume G6 though they were in differnt sides (important to note) and the previous MRI showed a suspicious large lesion. I opted for RP and got a dramatic upgrade in the path report though without apparent extension. Everyone has his own story but my general idea is that AS is only for very low risk cases that do not progress in any form.
Posted 8/26/2020 11:23 PM (GMT 0)
VIc, this is a decision only you can make, whether to go off AS. But I’m sure you’ll take a lot of guidance from your dr very seriously, as you should.

I would just point out that there are situations where a man is a perfect candidate for AS, but decides his mental capacity for doin* nothing just isn’t there, and it’s not worth the stress. Sounds like that’s not your situation right now, as AS is no longer recommended. But for those men, there is nothing wrong with deciding to treat.
What’s right for one guy may be wrong for another.
Posted 8/27/2020 2:08 AM (GMT 0)
That much cancer volume would move me to consider treatment. I’ve had eleven years in Johns Hopkins AS program, now having the same 4.4 PSA, but only one versus three positive cores, so I have no interest in treatment, so far. My criteria for leaving AS would be very high percentages of cancer in multiple G6 cores, or two or more cores with 10 percent of more of G7.

But, rather than radiation or surgery, I would try TULSA-PRO or HIFU. These are minimally damaging treatments, which could be repeated, or followed with any other treatment, if needed. You may have to pay for them out of pocket at this time, but, that is a value judgment which includes quality of life considerations.
Posted 8/27/2020 11:56 AM (GMT 0)
Vic,
If you're thinking of progressing to treatment, and if you're considering radiation therapy (RT), then you owe it to yourself to investigate treatments like SBRT (one brand name is CyberKnife). If you haven't already read about SBRT, it is an external beam therapy given on a very compressed schedule. My CyberKnife treatment was completed in 5 treatments given over a 10-day time span. SBRT has about the same success rate (maybe slightly better) as other RT methods and IIRC, is slightly better than surgery.

Side effects for most are minimal. I had some complications due to other pre-existing conditions, so my experience probably is not a good indicator of what you might expect. (Intestinal cramping because RT aggravated my pre-existing IBS.)

The only near-universal side/after-effect of SBRT seems to be near complete loss of ejaculate. Some men also experience some degree of ED, but that may be the result of other factors that existed prior to radiation and might have been accelerated by treatment.

SBRT might be worth the investigative time, if you are so inclined.
Posted 8/27/2020 1:45 PM (GMT 0)
Vic, I elected early treatment for a small volume of G6 since my three joint replacements placed me at a high risk for infections associated with repeated biopsy. I was more concerned about the risk of blood infection than I was of the cancer. I elected SBRT due to the very high success rate and the very low rate of any long term side effects associated with surgery. My urinary function was and remains excellent. The only side effect has been loss of ejaculate. Sex remains just as good as it was prior to treatment. Each treatment carries risk and it’s important to find the one in which you can live with.

On the radiation side you have a number of excellent options; however, SBRT was not widely available and I did have to drive approximately 2.5 hours each way for treatment. From beginning to end it was only eight visits and we turned the travel into finding some very nice places to enjoy a lunch or dinner. My follow up has been by virtual visit and very convenient. My treatment was completely covered by our Medicare plan. Do your homework and make an informed decision. I’d be glad to answer any questions regarding my experience.
Posted 8/27/2020 9:13 PM (GMT 0)
Vic, I can certainly understand if you decide to treat. I would probably do the same in your shoes...actually I did with just a slightly more serious diagnosis. As I'm sure you know, most any of the mainline treatments is very likely to cure you so you might consider picking one based on potential side effects. LDR Brachy isn't as common any more as it once was (probably less profitable) but it's low on the invasive scale and high on the cure and few SE scale for a man with your stats. You might want to talk with an LDR Brachy specialist to see what he/she says.

Jim
Posted 8/27/2020 9:21 PM (GMT 0)
It looks like we are all largely in agreement.
Although I am intrigued by the suggestion to use HIFU or TULSA-PRO, I would recommend a more widely accepted therapy such as SBRT (see Paxton's post). BTW, SBRT used to be 'experimental' but by now has very good long-term data to support its use for low(er) grade prostate cancer.
Posted 8/27/2020 11:55 PM (GMT 0)
Guys (this is one venue where we don't have to worry about gender faux pas) smile,

thanks for the continued information and encouragement. Although I'm going to wait for Dr. Epstein's analysis of the slides, I am leaning toward RT, or SBRT to be exact. Shortly after my first biopsy and diagnosis I talked to a friend of a friend who is my age (71) and was diagnosed with 3+4. Even though here in Augusta, Ga. we have two large hospitals, there is only one radiation facility and that is cyber knife, so being a retired geek electrical engineer I researched it and convinced myself that things like beam width, spread and accuracy is better than most of its competition. I contacted his RO who is now my RO and he's great. (How many doctors do you know who give you their cell number and say call or text anytime??)

He's ready to go and after I get Epstein's reading I'll most likely go that route. My friend has his SBRT done almost 2.5 years ago and is still SE free and that's encouraging for sure.

Also, for what it's worth, in my quest for a natural fix for this via diet and exercise, I've take up intermittent fasting as well as occasional water only fasts of up to 7 days. It is supposed to enhance things on a cellular level such as autophagy, apoptosis, IGF2, insulin and sugar levels and even creation of stem cells, all in a positive direction.

It didn't work for what ails me right now but fasting is starting to be researched seriously and I'm pretty sure that there are bona-fide NHS level studies that claim fasting before RT or Chemo conditions the cells so the good ones are less susceptible to harm and the bad ones are more susceptible. FWIW.

Again, than you all for you support, and I'll try and stay plugged in and report back on my progress after my therapy is complete,

Vic

PS I'll also update my signature when I get a copy of the pathology report
Posted 8/27/2020 11:58 PM (GMT 0)
I said NHS, I meant NIH...
Posted 8/28/2020 5:20 AM (GMT 0)

Vic Hardy said...
Guys (this is one venue where we don't have to worry about gender faux pas) smile,

thanks for the continued information and encouragement. Although I'm going to wait for Dr. Epstein's analysis of the slides, I am leaning toward RT, or SBRT to be exact. Shortly after my first biopsy and diagnosis I talked to a friend of a friend who is my age (71) and was diagnosed with 3+4. Even though here in Augusta, Ga. we have two large hospitals, there is only one radiation facility and that is cyber knife, so being a retired geek electrical engineer I researched it and convinced myself that things like beam width, spread and accuracy is better than most of its competition. I contacted his RO who is now my RO and he's great. (How many doctors do you know who give you their cell number and say call or text anytime??)

He's ready to go and after I get Epstein's reading I'll most likely go that route. My friend has his SBRT done almost 2.5 years ago and is still SE free and that's encouraging for sure.

Also, for what it's worth, in my quest for a natural fix for this via diet and exercise, I've take up intermittent fasting as well as occasional water only fasts of up to 7 days. It is supposed to enhance things on a cellular level such as autophagy, apoptosis, IGF2, insulin and sugar levels and even creation of stem cells, all in a positive direction.

It didn't work for what ails me right now but fasting is starting to be researched seriously and I'm pretty sure that there are bona-fide NHS level studies that claim fasting before RT or Chemo conditions the cells so the good ones are less susceptible to harm and the bad ones are more susceptible. FWIW.

Again, than you all for you support, and I'll try and stay plugged in and report back on my progress after my therapy is complete,

Vic

PS I'll also update my signature when I get a copy of the pathology report

Sounds like a good plan. Anything except surgery at your age.
Posted 8/28/2020 9:00 PM (GMT 0)
Being on AS myself, my concern is the high involvement of the positive cores. I would also wait for Epstein and genomics if you can swing it. Whether a GS 6 can metastasize would be less on my mind. My gut says treatment.
Posted 8/29/2020 4:38 PM (GMT 0)
I was on AS for just under 2 years, started with G6, and then the 2nd biopsy showed expanded G6 that morphed into some 3+4's and one 4+3. That's all it took to get me off AS and onto treatment. I chose to do SBRT (Varian TrueBeam), 5 treatments with 36.25gy total. I also started a 4 month course of Lupron beginning 2 months before RT started.
I'm one week past my last radiation treatment now, and SE's have so far been limited to urinary hesitancy, increased frequency and a weak stream. All pretty manageable, and I have a prescription for Flomax if it gets any worse. In the meantime, the Lupron SE's have been the toughest to handle; frequent hot flashes throughout the day and night. I'm used to them now, but they're no fun. Diet and exercise help.
The decision making process can be hard, but once you make your choice, it's best to go at it with confidence and determination. It feels good to take action, and I've found that it helps to keep positive attitudes at the forefront of your thoughts.
Posted 8/31/2020 6:07 PM (GMT 0)
Vic,
Good luck with what ever your decision is. I appreciate people who are on AS sharing what their action point is. Have been on AS for about 2 years today. In fact, I am going to my PC this afternoon for my yearly check up and to get the result from a blood letting on Friday. I typically get away without thinking about this disease until the week or so before the draw, and then it goes into high anxiety mode for the day or two before I get the results. I have a PSA number in mind for when to take action, but I am sure as time goes on, and if the number starts moving up, it may make my decision come faster. I had never really given much thought to the number of G6 tumors found, but i would definitely look hard into the matter if tumors were in different sides. Mine are on the same side. 8 was the PSA number we talked about with the urologist during my last visit. He used the analogy of kicking a point after when it is at a 4 (talking about surgery), as the number and biopsy show more it makes it a longer kick. He said what ever you do, don't make me kick from the 50 yard line.

I will update my signature once I get the results.

Larry
Posted 8/31/2020 7:11 PM (GMT 0)
Most formal AS protocols have -- in addition to entry requirements (e.g., max no. positive cores, max percentage tumor in any one core, max PSA) -- criteria that kick you off, too. Discussing AS with my uro (not with regard to me obviously), I asked him what protocol he follows, and he said his is probably closest to JH's, which is one of the strictest. He said some of the AS protocols out there are "pretty loosey goosey" (his phrase). He mentioned the value of genomic testing, especially if a guy with one G7 (3+4) lesion is considering AS.

Djin
Posted 8/31/2020 7:32 PM (GMT 0)

Vic Hardy said...
Hey everyone, been a while since I checked in here but I just had my second biopsy, roughly 18 months from my first. A year ago I had an MRI which came out lowest risk.

My results from the biopsy were again G6 but with higher volume than 18 months ago. I forgot to get a copy of the report but one area was 90% and I think there were others at 70% , 50% and lower (I'll post the actual numbers when I get the report). Also, I've had the office send the slides to Epstein for his opinion. My latest PSA was 6.7.

My urologist now recommends (radiation) treatment, and I may but want to be absolutely sure before I roll the dice with SE. My understanding of gleason is that G6 cannot metastasize, so if it stays G6, what is the risk of ever-increasing volume? My urologist said it can interfere with urinary function and require surgery (not necessarily RP).

So is this just a ticking time bomb that will eventually lead to G7 or can I continue with AS? I'm 71 YO.

Thanks in advance.

your numbers are very similar to mine when I was treated except I was 3 + 4. you know if there is gleason 4 cancer somewhere in there it is late-ish in the game.

I would definitely get treated now in your position.
Posted 9/1/2020 3:18 PM (GMT 0)
You really...with your temprement...have but 2 choices...this is true in all dilemmas...treat it asap so as to get on with your life asap...or put it be hind you and get on with your life... actually there is a third which comes into play with the first 2 choices...angst the rest of your life with one of the 2...which of those will provide less of the 3rd...We were never promised a rose garden...thorns are part of the mosaic...discover the thorns purpose and rejoice...templates for such abound...some with great reknown...most our own...regards...logo
Posted 9/1/2020 7:56 PM (GMT 0)

bbqdude said...
Vic,
Good luck with what ever your decision is. I appreciate people who are on AS sharing what their action point is. Have been on AS for about 2 years today. In fact, I am going to my PC this afternoon for my yearly check up and to get the result from a blood letting on Friday. I typically get away without thinking about this disease until the week or so before the draw, and then it goes into high anxiety mode for the day or two before I get the results. I have a PSA number in mind for when to take action, but I am sure as time goes on, and if the number starts moving up, it may make my decision come faster. I had never really given much thought to the number of G6 tumors found, but i would definitely look hard into the matter if tumors were in different sides. Mine are on the same side. 8 was the PSA number we talked about with the urologist during my last visit. He used the analogy of kicking a point after when it is at a 4 (talking about surgery), as the number and biopsy show more it makes it a longer kick. He said what ever you do, don't make me kick from the 50 yard line.

I will update my signature once I get the results.

Larry

You may want to consider using PSADensity rather than just PSA. That is the criterion used in JH’s AS program for ordering more tests, it’s a simple calculation using your PSA and prostate volume (from ultrasound or MRI).
Posted 9/2/2020 2:47 AM (GMT 0)
For those guys who follow the forum for information on SBRT treatment for Pc I thought I’d pass on some information regarding changes in treatment at Cleveland Clinic. It’s my understanding that CC has raised the radiation dose from 36.25 Gy to 40.0 Gy. They also have changed from the endorectal balloon to the gel spacer. I’m 38 months out from treatment and they’ve reduced my follow up virtual visits from every six months to once per year. They do want a PSA every six months and had no concern about my bounces to date. He said it can take 4 or 5 years to settle down. I asked if my SBRT placed me at a higher risk of secondary cancer and the answer was that risk was incredibly low and they saw no reason to increase the frequency for colonoscopy beyond the normal 10 year cycle. Men with other risk factors including genetic history, polyps on previous colonoscopy typically are on a five year schedule. They did say that men treated with ‘seeds’ maybe on a five year cycle as well. So far...so good.
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