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Posted 12/4/2014 9:56 PM (GMT 0)
Hi Science and welcome to HW. As you perhaps saw from Prato's thread, I have copied and pasted your post as well as the replies you received. I wanted you to have your own thread so the members can welcome you properly and to give attention to the questions you asked.

Jim aka Tudpock18 (Moderator)


Hi All,

This is an interesting thread on a few levels.

I am very new to this so please excuse me if I say something that is obvious.

One of the issues with my biopsy is that a few of the cores turned into fragments. Perhaps a better way to think about severity is to talk about maximum dimension in mm of any tumor as sampled by the core. My largest one is 5mm, with one at 3mm and one at 1mm. Further, do Path reports ever say PC at capsule edge?

Also, regarding G6 (3+3) on a biopsy. My doctors tell me that there is a ~25-40% chance that the Gleason grade will go up after the prostate is out and final pathology is done on the whole prostate vs. the cores. How much faith can you put in Biopsy that says G6(3+3)?

And finally a question: My PSA is 1, I am positive on 4 cores out of 14 (with some fragmentation of the cores), I am T1c, -DRE, totally asymptomatic and yet due to 2 first degree relatives with early, aggressive, PC and 3 more 2nd degree relatives in my paternal line with the same agro PC and same early deaths due to PC. I have elected to do a RALP (2 weeks from today). Would one of you try to talk me out of the RALP?

Best Regards, ScientificLifestyle
__________________________________________________________________________________
Strong Family History of PC
Younger brother: PC at age 45 T2, PSA=2.95, + DRE > open Prost, doing fine now
Father: PC T4, age 55, PSA=20, Met to Lymph Nodes and Bones, Hormone, Rad, passed at age 64
GrandFather, Great Uncles all died of PC at age 62-64
Me: Year of Birth 1959
Diagnosed Oct 2014, Negative DRE, PSA=1, no symptoms, T1c
Biopsy shows 4 of 14 cores(with fragmentation) Adenacarcinoma 5mm, 2mm, 1mm max all G6(3+3)
Preemptive Biopsy due to Family History and age=55

Scheduled RALP 18 Dec with Dr. A. Martinez
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Mel Wrote:
compiler
Veteran Member


Posted Today 4:26 PM (GMT -5)
I chose surgery, but I was not a candidate for AS (G4+3, downgraded to G3+4 on a second opinion by Ford Hospital where I elected to have Dr. Menon do my surgery).

If I had the AS, I would not have chosen that. I am a worrier, but my main concern was how do I know I really have say a G3+3. The data I saw was that 30% of them get upgraded. That is a non-starter for me. However, these days they do a LOT more with imaging and other tests, so maybe they are better off at monitoring you. Still, I have my doubts that they can suddenly say a G6 is now a G7. But they may be able to pick up suspicious lesions via the newest MRIs. It would be a harder decision today.

Mel



Doug Wrote:
Shaba.Doug
Regular Member


Posted Today 4:41 PM (GMT -5)
Science Guy
It's not up to us to talk you out of or into a treatment. That's your decision after doing your due diligence. Ask Prato, you don't want to spend the next 2 weeks second guessing yourself.
I went with a RALP, surgery was fine, path report was pretty good. It was my G9 that got me, it had already spread. Would I choose surgery again? You bet. BUT that's me and my decision. You're in good shape and I like your "preemptive strike" attitude.

Cheers, Doug
Age at Dx 60 25/02/14. PSA: 3.83
Biopsy: 4 of 10 cores positive GS 9 (4+5) 60%,80%,90%,90%
T3 MX NO
RALP completed: 19/03/14 non-nerve sparing
Pathology: PT3a GS: 4+5 Margins: neg Lymph Nodes (16): neg
Seminal Ves.: neg PNI: present EPE: yes
Post Op PSA:
10/6: 1.15
16/9: 2.29
29/10: 2.81

Bone Mets:skull, neck, shoulder, pelvis

Post Edited (Tudpock18) : 12/4/2014 4:34:55 PM (GMT-7)

Posted 12/4/2014 10:30 PM (GMT 0)
Hello again, Science. As Doug said, it's really not our role to talk you out of your RALP. However, if you are concerned about it then maybe you should postpone it until you are confident.

Without more info, it's difficult for us to know how knowledgeable you are about PCa. We have a sticky thread at the top of our forum that is designed for newly diagnosed patients. I would suggest that you look this over: www.healingwell.com/community/default.aspx?f=35&m=2652250

Additionally, you might go back and look at a few of the recent threads started by Pratoman. Within these threads is a lot of good advice that you might also consider. This includes:

1. Getting another opinion on your biopsy slides by an expert like Bostwick or Epstein.

2. Reading some excellent books like Walsh's, "Guide to Surviving Prostate Cancer" and Scholz', "Invasion of the Prostate Snatchers".

3. Realizing that with your stats there is time to do your due diligence and a high likelihood that any of the major treatments will cure you. Therefore, you should consider discussing you case with others doctors such as those who specialize in LDR Brachytherapy, HDR Brachytherapy and SBRT. Those are valid treatments that you may find more suitable depending on your situation. At least you should do your due diligence and review them before making a potentially life changing decision about treatment.

Jim
Posted 12/4/2014 10:39 PM (GMT 0)
Another great option is brachytherapy, either low dose permanent seeds or High Dose Rate. Both are equal to surgery in cure rates for low risk cancer, but have significantly less severe side effects.

A couple of websites to learn from are www.prostrcision.com for seeds and www.cetmc.com for HDR. Seek out the specialists in your area and get their opinions. Your stats indicate you have no reason to be in any hurry to get treated.
Posted 12/4/2014 11:18 PM (GMT 0)

For those of you wondering, when the above comment said...
Ban compiler and Lock Access.Ban IP : 71.13.82.190Edit post (Moderator Function)Delete post (Moderator Function)Quote This PostIgnore Posts From compiler.alert An Admin about This Post.

Jim wasn't threatening to ban Mel, or lock his access, or ban his IP address, or edit his post, or quote it, or ignore Mel, or even to fink on him to Peter the Admin.

That stuff is what you get when a moderator copies the top-secret buttons he sees at the top of every message.

Mr Scientific,

Welcome to the forum. I'm a surgery guy. You'll get no argument from me. I went up two risk categories after surgery from low-intermediate to high. By itself your biopsy results aren't compelling to seek treatment but with your disconcerting family history your decision is quite understandable.

You probably won't get many members here who try to talk you out of things but there will be quite a few who try to talk you into something else. If you go to surgery without at least talking to a radiation oncologist it will make a number of guys sad.
Posted 12/4/2014 11:36 PM (GMT 0)
Peter....hahahaha. Sorry if I gave away the company secrets! No, i would never ban Mel (well, almost never). Anyway, I've cleaned up my short-cuts.

Jim
Posted 12/4/2014 11:40 PM (GMT 0)
Peter:

I must have missed the "ban compiler" thing. I don't see it

You do realize that if you ban me, there will clearly be demonstrations!

(I've been IGNORED, but never BANNED!)

Mel
Posted 12/4/2014 11:44 PM (GMT 0)
Mel, I could pretend that Peter made that up. But the truth is that I edited my post so that your message came thru clearly. My original copy and paste included some secret buttons. If I had left them revealed, 142 would have to pay you a visit.

Jim
Posted 12/5/2014 1:18 AM (GMT 0)
@Science...
So you basically have three choices - Active surveillance, Surgey or radiation.

I a, not a big fan of AS, but that's me, I even had one pretty high profile Medical oncologist (specialization in PC). Tell me to consider it, if an MRI didn't show more than my G6 biopsy, so what do I know. I just feel if I have a window for cure, I'm jumping thru it.

As far as the other two options, I would tell you what the good folks here have told me. Look at all options. I am pretty set on RALPH, and have it scheduled. However I am seeing a radiation Onc next week, to learn about my other options. Who knows, maybe he will blow me away with some fact I didn't know.

But honestly, my reason for doing the meeting, and I point it out because you should consider this - is that the one thing I don't want after RALPH, is buyers remorse. Don't ever want to look back after its too late and say to myself "I should have looked more closely at this option or that option"

That's my advice to you. Don't rush, consider all options. At the end of the day, the only bad decision is making one without being properly educated. All options are available to guys like you and I
As far as possibility of an upgrade after surgey to higher GLeason - yeah it's a possibility, and yeah it bothers me, especially since I was originally, before second opinion, told that I was G8. But we cant base decisions on what we don't inow. We can only act on what we know.
Also, as mentioned above, get a second opinion on the slides. It's not complicated. Just tell your uro's office you want the slides sent out for a second opinion to a john hopkins Dr Epsetin, or Bostwick Labs David Bostwick. They'll take care of the rest. Thy are used to executing on that request.

hopemthis helps, I'm new at this too.
Posted 12/5/2014 5:15 PM (GMT 0)
Welcome.

You need to make your own decision on AS that generally is only available to Gleason 6's perhaps some G7 (3+4)'s.

Dr Mulhall says it is the only option that does nto adversely affect one's sex life

www.mskcc.org/cancer-care/doctor/john-mulhall

The only downfall would be for guys like Pratoman who would put themselves through excess worry knowing there was prostate cancer still in their body, but for lots of other guys AS treats them well.

Good luck whatever you decide.

LupronJim
Posted 12/5/2014 5:37 PM (GMT 0)
Jim:

Is not the other downfall that a patient's G3+3 is really higher, hence more aggressive?

I understand they continually monitor for that, but I remain a tad unconvinced that the monitoring will spot the G7 until the patient is in a much more serious predicament.

I know I get yelled at for such a viewpoint, but I'm not convinced it is invalid.

Mel
Posted 12/5/2014 11:50 PM (GMT 0)
Not an expert since I was G9 from the get-go, but seems to me PSA is a pretty good indicator for G6 and G7, not always for G9's like me whose PSA peaked at only 3.68 pre biopsy.

Even then my PSADT Doubling time set off warning bells.

Kind of same thing, a man or spouse who is type to worry whether PSA is accurate versus dwelling on they may have missed something may be better to go with surgery to get the pathology afterwards, but that does contibute to the controversial over treatment.

A man or spouse who have confidence in best available tools particualrly if image guided and not just a blind biopsy may be a better candidate for AS after of course having the second reading from Jonathan Epstein at Johns Hopkins. It's not head in the sand and they know it's always possible something ws missed.

As you say the constant monitoring makes up for the randomness of the first biopsy over time, G7 can't hide forever and if it presents hopefully is (3+4) and not (4+3) or worse.

We have all been here on being told we have Cancer, so not minimizing that at all.

LupronJim
Posted 12/5/2014 11:53 PM (GMT 0)
Wow, Thank you All for your responses! Thank you for all the good challenging thoughts.

At the time I made the post, I had not finished my reading. I have Walsh's book and I have almost read it cover to cover. I have several other books that I have finished and one more to start. I went back over my notes again very carefully. I use the Sloan Ketttering outcome nomigraph. I have not met with a RO. I have discussed the options with my Urologist and two surgeons. I have looked extensively at the Parlin and Han tables. I have read most every thing I can find on the net.

Unfortunately, I do not know Dad's Gleason score.

I am prone to worry and have anxiety built up over the last 24 years over my Dad's fight and loss with PC.

The main appeal of surgery is that it can probably excise all the cancer and all the prostate tissue. This leaves me with EBR as a salvage treatment in the small chance I need it. I do not want to wait and see if that remaining prostate tissue will develop PC, I want to remove all the prostate tissue.

As an engineer, I understand the risks of Urinary Incontinence and Impotency. From what we know now, my odds of nerve sparing are very high and there are many good treatments for impotence. I am also not in a relationship now and not actively seeking a relationship after a painful divorce 9 years ago. The one big potential problem is urinary incontinence, which also has some treatments bur not as many effective ones. I also understand and accept the risk of Depression after RALP, particularly if I have UI or Incont side effects that do not resolve on 1-2 years.

The main drawback of BT, either high or low radiation intensity for me (in addition to the idea that not all of the prostate tissue is removed) is bowel damage. I have suffered with IBS/Spastic Colon for decades. I do not want to risk making that worse.

Another over-arching concern that I have is that our knowledge about genetics and why PC happens earlier and is more aggressive in my paternal line is not well understood at all. My pre-op Gleason score of 6 (3+3) seems comforting, but how do we know that it will only take a year to turn into a 9? There may be another genetic reason that the cancer in my family is so deadly.

So for these reasons, I am biased against radiation and chose RALP.

Best Regards, Pat
__________________________________________________________________________________
Strong Family History of PC
Younger brother: PC at age 45 T2, PSA=2.95, + DRE > open Prost, doing fine now
Father: PC T4, age 55, PSA=20, Met to Lymph Nodes and Bones, Hormone, Rad, passed at age 64
GrandFather, Great Uncles all died of PC at age 62-64
Me: Year of Birth 1959
Diagnosed Oct 2014, Negative DRE, PSA=1, no symptoms, T1c
Biopsy shows 4 of 14 cores(with fragmentation) Adenacarcinoma 5mm, 2mm, 1mm max all G6(3+3)
Preemptive Biopsy due to Family History and age=55

Scheduled RALP 18 Dec with Dr. A. Martinez
Posted 12/6/2014 12:06 AM (GMT 0)
Pat - My understanding is that G6 does not migrate into higher Gleson scores but rather the higher Gleason score was there but random sampling only identified the G6 cells.

As an engineer you know all about sampling errors, confidence intervals etc.

I am sure you noticed the post of the hell Angel is going through but those type of adverse surgery side effects are already factored into the tables you referenced.

It comes down to personal preferences and valid arguments can be made for any of AS, surgery or radiation depending on a lot of factors. Again for IBD, the least invasive would be AS.

Good luck with your decision, which most people here are pretty good about acknowledging it is yours to make, and does not have to mirror theirs as every PCa as well as every indivual is different. Your due diligence to date is impressive, and you do have luxury of time to research until you are as comfortable as you can ever be.

LupronJim
Posted 12/6/2014 12:08 AM (GMT 0)
Hi Pat and let me add my welcome to the others. Your line of reasoning is sound and it sounds like you have a good plan going in. I'm always in favor of as much due diligence as possible, which would mean talking to an RO with a load of experience with PC. At the same time, if you've pretty much made up your mind it may not make sense to upset the apple cart too much at this point. Just remember, as a G6 you do have lots of time to make up your mind.

The one comment that you made that I don't believe is accurate (smart guys, correct me if I'm wrong) is that G6 doesn't just morph into G9. That said, I can certainly understand your concern given your family history.

Good luck and know that just about any treatment will cure you. Let us know how we can help.
Posted 12/6/2014 1:41 AM (GMT 0)
Pat, FWIW I too have dealt with IBS/Spastic Colon issues for decades, as well as hemorrhoids, and all I can add is that in my case none of those issues were affected adversely by my LDR BT.

Continued best as you move down the road.
Posted 12/6/2014 2:18 PM (GMT 0)
Pat, it sounds like you have your mind made up. But, again FWIW, my opinion is that you have not done your due diligence if you have only met with surgeons. I think you owe it to yourself to review the options of LDR Brachy, HDR Brachy and SBRT. You may still ultimately choose surgery but you get one chance to do this right the first time and you should do your investigation now rather than chance second guessing yourself later.

BTW, I disagree with the argument about choosing surgery so that you will have radiation as a salvage treatment after failed surgery. Common sense would dictate that if the radiation would get the remaining cancer after failed surgery then it would have gotten it the first time without undergoing multiple treatments. Also, there are just as many salvage options after a failed brachytherapy as there are salvage options after a failed surgery - they are just different ones. That's where an experienced RO could help you sort through the myths.

In any case, good luck.

Jim
Posted 12/6/2014 3:50 PM (GMT 0)
Jim:

I have to comment here. Yes, if surgery fails then you have SRT as a backup. This is true. You and a few others continue to call this bad reasoning because if SRT then works, it would have worked the first time. TRUE, but MEANINGLESS. We can only deal with the facts at hand. If we knew IN ADVANCE that tx. X would work but tx. Y would fail, of course we would choose tx. X. But we don't know that. So, the SRT as a backup argument is totally valid.

There are many reasons to choose surgery as a primary tx. and there are many reasons to choose radiation as a primary tx. They each have an array of possible SE that come on at different times. The health/age of the patient is a factor. Many reasons. But the " if SRT then works, it would have worked the first time." is not one of them

Mel
Posted 12/6/2014 5:31 PM (GMT 0)
Mel, you and I will just have to agree to disagree on this and move on.

The other point I have about using "radiation as a backup" as a reason for surgery is that this is only part of the story. As I and others have pointed out many times, there are salvage treatments for failed brachytherapy that are JUST AS EFFECTIVE as salvage radiation for failed surgery. However, this fact is rarely pointed out by patients' urologists as we constantly hear "radiation as a backup" as a reason to choose surgery. This is just plain faulty logic IMHO.


Jim
Posted 12/6/2014 5:47 PM (GMT 0)
From the other thread it sounds like your mnd is made up with surgery scheduled for Dec 14.

www.healingwell.com/community/default.aspx?f=35&m=3258878&g=3260171#m3260171

If you are in SF area though, why not see the Radiation oncologists at UCSF. I am not sure if world renowned Mack Roach who I consulted with last summer is still on sabbatical but even if he is, UCSF has many others who have learned from the best.

Running out of time though to do this final piece of due diligence. So make the call on Monday.

In that thread you asked for our prayers, and you have them.

LupronJim
Posted 12/6/2014 7:54 PM (GMT 0)
Jim:

Yes, we can agree to disagree. I am just pointing that out because it really is a fallacious argument (from a logical viewpoint) and I've seen it quite often. Now, regarding your other point, I'll concede to your knowledge as I don't know what salvage txs. are available if radiation fails. I do know that surgery is generally not advisable as a backup (much more difficult, although it has been done).

The idea that with surgery you have SRT as a backup is just one of the arguments to be put on a list. There are pros and cons to every tx. They all come with a cost and, unfortunately, for some the results of a tx. can be disastrous. We are all stuck with our situations and we can only hope we don't become "THAT GUY"

Mel
Posted 12/6/2014 8:41 PM (GMT 0)

compiler said...


The idea that with surgery you have SRT as a backup is just one of the arguments to be put on a list.

Mel

Mel, my main point is that the sentence from you that I am quoting is the illogical argument if one is comparing surgery and brachytherapy. The fact is that there are equally effective salvage treatments after EITHER procedure and this means that the whole issue should be cancelled out - advantage to neither side. Unfortunately many urologists list "radiation backup" as a reason to choose surgery. What they should be saying (if they know it as my urologist did) is that both brachytherapy and surgery have salvage treatment plans that are equally effective therefore "backup plan" should not be considered as favoring either choice.

In other words it's not that a urologist is lying when then only telling a patient about radiation backup but he/she is omitting an important piece of information that should be considered when balancing the choice.

OK?

Jim
Posted 12/6/2014 9:17 PM (GMT 0)
Tud:

Again, I will assume you are correct and there are some tried and true potentially curative backups for a failed primary radiation tx (this is what you are saying, right?).

That's fine and it should be mentioned. Is it too new? I'm not sure why this isn't mentioned.

My only argument is your saying that if SRT works for someone as a B/U, then it could have been used as a primary tx. and hence somehow this means the argument that surgery has a B/U, namely SRT, is fallacious. That is faulty reasoning and that's my point. This goes back to my tx X and tx. Y claim earlier. We can only make decisions on the facts we have, BEFORE the tx. result.

I've come full circle, so that's my last word on this...probably! (<g>)





Mel
Posted 12/6/2014 10:29 PM (GMT 0)
Mel, for the time being I'll just put aside the issue you raise about faulty reasoning. You think it's faulty, I do not. But, that's beside the MAIN point I'm trying to make. My MAIN point is that there are multiple options for failed radiation just as there are options for failed surgery. The fact is that it seems most urologists do not seem to divulge this to their patients.

You asked if this was a new concept. No, in fact here is a Healing Well thread from JohnT posted several years ago. www.healingwell.com/community/default.aspx?f=35&m=1625554 This was 2009.

This has been reiterated numerous times by JT, me and others. Nevertheless, new patients still arrive with the bogus concept that a reason to pick surgery is that there is a backup plan -- the implication being that there is no backup plan for failed radiation. That is simply not true and is a serious omission of pertinent data that can lead to bad decision making.

Jim
Posted 12/6/2014 10:45 PM (GMT 0)
Tud:

I'll let the point go, rather than beating it to death.

Why is the radiation backup txs NOT mentioned. When I was investigating matters 5 years ago, this was an important consideration. I remember the surgical folks certainly made it clear (SRT backup). They also made it clear that it is much more difficult reversing the Txs.

I do not remember AT ALL hearing about backups should radiation fail, and I did visit Dr. Hamstra, one of the very top RO guys at U. of Mich. He may have mentioned some sort of back-up, but it sure was not clear in my mind, anyway, and you are confirming that this is not mentioned. Why? Might it be if radiation fails then the B/U is unlikely to succeed? But this is also the case with surgery. The success rate for SRT is roughly 30%.

What am I missing, if anything? Is it just that the surgeons are better marketers?


Mel
Posted 12/7/2014 12:05 AM (GMT 0)
When I met with the RO that specializes in Cyberknife, he mentioned Cryo as a backup for failed radiation. I know also that there are some surgeons who will do surgery after failed radiation, including Samadi, and James Eastham at MSKCC. But it's not an ideal treatment and the side effects from what ive read can be worse than surgery as primary treatment.

I should probably stay out of this since 1. I'm still in the process of making a final decision about primary tx (sort of), and 2. Compared to most here, I don't know jack about the subject.
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