HealingWell
Search Close Search
☰

55 YO, G6 Making Decisions

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/17/2013 5:47 PM (GMT 0)
Hello all,
I've posted a few times but thought I would introduce myself. My stats are in my signature and while somewhat new to PCa, I have done a lot of research and have participated in other forums. Right now I am probably 40%/30%/30% for surgery/radiation/AS respectively (though I have probably flipped around several times). Below I outline my thought process for this position:

Assumptions:

  • Putting PCa aside, I will live for 30 more years (in other words, not die from any other cause) based on family history and link
  • I am not a worry wart, instead I belive I am very objective
  • My quality of life (QoL) objectives are to 1) live a long time, 2) take care of my family, 3)be happy, 4)be financially secure
  • My goals for dealing with PCa are 1)live a long time, 2) maintain my QoL, 3) minimizing long term side effects ({a} recurrence if treated, {b} erectile dysfunction, {c} bowel problems, {d} incontinence).
  • QoL is far broader than ED and incontinence, I think of those as details
  • My current state in some side effect areas is 1) ED: Some problems [formerly on Testosterone replacement therapy], 2) bowel: excellent, 3) incontinence: excellent

My reasoning:

  • I definitely wants to live another 30 years
  • Based on Partin Tables, 20% of men with G6 PCa have a higher grade decease found after surgery and my chance of extraprostatic extension (beyond the prostate) are 18% link. Based on my latest PSA and the fact I have two HGPIN at biopsy indicates my chances of having G7+ are even greater.
  • NCCN states that one of the criteria for AS is to have <20 yrs of life expectancy link: see PROS-B. This is also stated in the guidelines by John Hopkins link
  • I have reduce the likelyhood of radiation: Some studies have shown that radiation side effects get worse with time, not better. link Reoccurrence treatment options are limited with radiation (salvage surgery is more difficult) link. Some side effects can be worse than the original problem (radiation cystitis or proctitis). Some studies show that long term survival after radiation is not much better than AS link.
  • My rise in PSA is concerning. While it could be something else benign, I have no symptoms of prostatitis (though it could be asymptomatic prostatitis). If PCa caused, then this doubling time is well beyond most limits for AS. link
  • Several studies show that the mortality rate are improved by ~5% at 15 years for men that choose surgery versus AS
  • It is easier to recover from surgery at a younger age and the surgical risks are lower link link
  • Even with AS and all the PSA tests and biopsies, there is no clear tipping point on when to get treatment (studies appear to be all over the map on this), if at all… so why bother to even monitor it. link
  • For men with long life expectancies, AS is putting of the inevitable treatment. Trading potential (because there could be none or minimal) side effects of treatment, for shorter term perceived gain.
  • 30% of those on AS will have cancer progression within 5 years link
  • Any future curative procedures or solutions will not have historical data to support any claims of being better than what is available today with surgery
  • While there are studies that indicate G3 cells will not advance to G4 cells, these studies are still a bit inconclusive link There are other studies that conclude that the PCa does evolve to higher levels over time link link cancerres.aacrjournals.org/content/early/2012/11/30/0008-5472.CAN-12-2799.abstract.
    So while there appears to be no conclusive evidence at this time, there is some basis that indicates PCa does evolve… so why wait?

So there it is, thanks for reading!
Posted 11/17/2013 6:11 PM (GMT 0)
Hi Mikla, very impressive analysis and thought process. I can see you will do just fine with whatever approach you select. Thanks for the thorough post, will be of great help to many new posters. Keep us updated on your process.
Posted 11/17/2013 6:22 PM (GMT 0)
Mikla, it appears like you've done your homework and made your choice. I assume you've spoken to a variety of professionals. I chose SBRT with similar stats and age as you. ED and incontinence were much more than "details" (your words) to me, but it sounds like you've thought this out and will be doing what's best for YOU. Best of luck to you as you move forward on your journey. You should do fine.
Mike
Posted 11/17/2013 9:56 PM (GMT 0)
Thanks! ED and incontinence are still a question for me (and probably higher on the list for my wife), but if I get surgery, it will be by someone that is an expert (# of surgeries) in nerve-sparing (Arthur Burnett is near the top of my list).

I am still considering radiation but one of the things that holds me back is not being able to get a pathology (you can see by my initial post I am fairly analytical and like data).
Posted 11/17/2013 11:54 PM (GMT 0)
I had similar numbers, I'm the same age (57) and size (6'3" 255#) with similar readings. I chose surgery for all the same reasons that have you leaning that way. A medical oncologist, who specializes in treating recurring PCa, helped me sort thru my options. Meeting all my 6 children's grandchildren is my goal. She said all the treatments are very effective, but if I'm unlucky and it comes back, they have more treatments options for surgical patients than radiation patients. At my age I expected to tolerate surgery well. I liked the idea that, with surgery, they'd get a much better look at what was really going on in there.
We are all different, but it was the right call for me. I went back to work 5 days after surgery. I didn't have to. I just felt fine. I had no side effects (no ED or incontinence).
The truly awesome part of PCa, when caught at the stage you appear to be at, is that no matter which option you choose it is now almost guaranteed that you will die.......of something else.
Mikey
Posted 11/18/2013 12:11 AM (GMT 0)
Mikla, I am also very impressed with your research and thought process. I am sure you will make a well-informed and properly thought out decision.

I just wanted to offer you some information and some food for thought. I don't know if you (and others) will find this as encouragement or discouragement, but I hope you find it useful.

The priority with surgery (or any other treatment for that matter) is (1) get rid of the cancer; (2) maintain continence; (3) maintain erectile function. In my case, (2) and (3) might have been reversed, I considered maintaining sexual function pretty far up there. My uro at the time (who did not end up being my surgeon) said that he could guarantee that one way or another, ED could be solved, even if things went worse than hoped for. Well, in my case, although the initial word was that both nerves were spared, and I had no ED problems before surgery, and I was a youngster so I would "do just fine" post-surgery, things did not go well (regarding ED, otherwise surgery went pretty well). After 4 years of not wanting to admit ED recovery was not going to happen, I had an implant. Sexual function has been fully restored, and my wife and I are both very happy (finally) with the outcome. This is what my original uro meant by "regardless, your ED can be solved". Although not my preferred result by a long shot, unless you are not willing to go through with another surgery, you DO have a means to restore sexual function even if the worst in terms of priority (3) occurs.
As I said, perhaps this will be discouragement (rather than encouragement) to some, but food for thought at the very least, and for someone as analytical as you, I hope you find the point useful.
Jeff
Posted 11/18/2013 12:16 AM (GMT 0)
im_patient:

That's is an important point you make.

When I made my decision, #1 was clearly my first priority and I new #3 could be resolved with another procedure if I had to go that route.

I'm glad that it's finally resolved for you after 4 years.
Posted 11/18/2013 1:08 AM (GMT 0)
hi,

 I can't believe how similar our stats are I was born sept 57 with the same low % and g6 I was diagnosed in may and took my time thinking about what was best for me and decided in sept to have surgery for all the same reasons you listed. i'm not trying to influence your decision but want to tell you incontinence has almost been a non issue and while sex is different I've had no ed problems (with Cialis). obviously there is no guaranties and I've been extremely fortunate with these issues but a big part of my decision was that I felt that i'm very good shape and very active and from all I read I would have a better chance of a good recovery than if I waited (none of us know what are health will be in the future). so I had the same feelings you are having now but could have never wrote them so articulately.

good luck with your decision and keep us informed.

carl     

Posted 11/18/2013 1:19 AM (GMT 0)
Im... thanks for the post. My wife and I actually talked about that today. While she wants to be a bit selfish (and she is not... she is VERY supportive), she is more worried about me. We also talked about all the other possibilities and if we keep playing the If..., If..., If... game, then nothing would happen.

I am a pretty positive person, so not matter what happens as long as I am around to see my wife, kids and family everything else can be figured out.

Heck, my wife and I are already dealing with the effects of giving up TRT... so I just change life style a bit (eat better and exercise) and keep some of the magic blue diamond pills handy for the frisky times!
Posted 11/18/2013 1:22 AM (GMT 0)
Hi Carl... thanks for the reassuring words! It is always good to hear about someone that had such a successful surgery! If you don't mind me asking, who did your surgery? I guess that question is really for anyone that had surgery.
Thanks again!
Posted 11/18/2013 1:47 AM (GMT 0)
I'm also impressed by your analysis. You are asking the right questions.

Here are some of the rational that convinced me to follow AS:

- Men have a 2.71% chance of dying of prostate cancer.

http://www.cancer.org/cancer/cancerbasics/lifetime-probability-of-developing-or-dying-from-cancer

- The median age of death from PC is 80 years old.

http://seer.cancer.gov/statfacts/html/prost.html

- The average life expectancy of North American males is about 78-years-old. Therefore you are far more likely to die of something else than prostate cancer.

- Autopsy studies on random men show that prostate cancer is fairly prevalent.

" In this case, researchers at Wayne State University School of Medicine in Detroit, Mich., were curious about prostate cancer. So they obtained the prostate glands of 1,056 men whose doctors had not diagnosed prostate cancer prior to death. The men were between 20 and 80 years old.

Of 186 prostate glands from 20-year-old men, 19 had prostate cancer. That amounts to more than 10 percent of these young men.

As expected, the number of men with prostate cancer increased with age. Among men in their 30s, the researchers found that 31 percent had prostate cancer. When men hit their 40s, the number jumped to 40 percent. And by the time a man is 60 years old, according to this autopsy study, his chances of having prostate cancer is 70 percent."

http://easyhealthoptions.com/alternative-medicine/all-men-get-prostate-cancer-what-are-you-going-do-about-it/

If these autopsy stats are correct (and I've seen similar stats from different studies) - consider the rates of prostatectomies if all men were biopsied. Then consider that the death rate is 2.71% at a median age of 80.

The one thing I tell myself is that perhaps finding I had cancer and following AS will result in me living longer because it is a heck of an incentive to follow a healthy lifestyle. I've lost 15 lbs through healthy eating and exercise. I don't know that I would have that same motivation if I had treatment.

I should say that I am only sharing what has influenced me to my decision. There are very good arguments, and you have made some of them, for opting for treatment. There are no right or wrong answers - only what you are more comfortable with and what your gut tells you to do.
Posted 11/18/2013 2:04 AM (GMT 0)

Mikey72 said...
I had similar numbers, I'm the same age (57) and size (6'3" 255#) with similar readings. I chose surgery for all the same reasons that have you leaning that way. A medical oncologist, who specializes in treating recurring PCa, helped me sort thru my options. Meeting all my 6 children's grandchildren is my goal. She said all the treatments are very effective, but if I'm unlucky and it comes back, they have more treatments options for surgical patients than radiation patients. At my age I expected to tolerate surgery well. I liked the idea that, with surgery, they'd get a much better look at what was really going on in there.
We are all different, but it was the right call for me. I went back to work 5 days after surgery. I didn't have to. I just felt fine. I had no side effects (no ED or incontinence).
The truly awesome part of PCa, when caught at the stage you appear to be at, is that no matter which option you choose it is now almost guaranteed that you will die.......of something else.
Mikey
--------------------------------------------------
Diagnosed 6/11/13 - Age 57
PSA 6.7 on April 4, 4.2 on May 4, 5.1 on Aug 6
Biopsy June 4 - Gleason 7 (3+4)
Nerve Sparing RALP - MSKCC - Oct 2, 2013
Extracapsular extension - pT3a - but no involvement elsewhere.
Final Gleason - 6 (3+3)
I wear a pad for just a few drops a day. No ED.
Total weight of prostate and seminal vesicles was 61 grams

Mikey72, your case is very interesting in a couple of respects:

First, the downgrade from GS7 on biopsy to GS6 on final pathology. Was the GS7 ever reviewed by MSK or another expert?

Second, the fact that you had EPE, which proves that GS6 can be locally invasive.

In any event, it sounds like you had a great outcome. Congratulations!
Posted 11/18/2013 2:13 AM (GMT 0)
Hi and welcome.

Today's specialists in PC encourage men with very low risk cases like yours not to seek immediate treatment...and I would certainly do the same. Take time to further the good start on your education that you already have. With just one biopsy resulting in very low case characteristics, your prudent next step is to see what your second confirmatory biopsy shows 12 months from now. 25% of cases like yours showed no detectable cancer after 12 months, 50% stayed the same (no immediate treatment necessary), and 25% found additional cancers which warranted treatment. This gives you time to further your education.

As you retread the NCCN guidelines, you will find that your interpretation was off...the critera for AS is NOT for men to have <20 yrs LE, as you originally posted. Rather, for men with less than 20 yrs LE and very low risk it is the ONLY recommendation. For men with >20 yrs LE AS is ONE OF the recommendations, but no longer the ONLY recommendation. Hopkins has also recently loosened their tight AS criteria based on years of positive, conservative results.

Another misconception is that AS is merely "putting off the inevitable" until later. Some will receive deferred treatment, others will never need treatment; the "inevitable" notion is a fallacy. In fact, the reality is that deferred treatments have been shown to have the same or better outcomes than immediate treatments among cohorts of men with initial diagnosis of low risk cancer.

You've got a good start...keep reading, and don't rush.

Best regards
Posted 11/18/2013 2:35 AM (GMT 0)
Njs:
Actually, the first reading I got from the biopsy from the local uro was GS6. Then I sent the same slides to MSKCC before my first meeting with the oncologist. I heard all the guidance about getting it read by someone who only analyzes prostate slide. It was MSKCC that said GS7. Then the final reading turned out to be GS6. I don't meet with my Dr again till mid December, after the results of my first post op PSA are in, but I plan to ask him about the different scores.
Otherwise, you are right. It appears I got the best outcome possible. In addition to an awesomely dedicated surgeon, an awful lot of prayer warriors were very busy during my surgery. I am very blessed.
Mikey
Posted 11/18/2013 2:47 AM (GMT 0)
Mikla
Your analysis is excellent. You have many options. If I hadn't had BPH I may have had brachytherapy but I was told IMRT with ADT was indicated. Not wanting to go thru that I elected RP. But I'm a 70 yr old with GL 9 and a history of ED so ED was not my biggest concern. RP went fine. I chose Johns Hopkins due to its reputation.

You appear to be low risk but only post RP pathology can determine that as you know .
I wish you the best. Let us know your progress.
Bob
Posted 11/18/2013 4:15 AM (GMT 0)

Casey59 said...

In fact, the reality is that deferred treatments have been shown to have the same or better outcomes than immediate treatments among cohorts of men with initial diagnosis of low risk cancer.

Casey,

That's the first time I've ever seen it stated that deferred treatment has been shown to result in better outcomes. I am aware of at least one study that showed the opposite. Can you elaborate on the details of the studies to which you are referring?
Posted 11/18/2013 4:21 AM (GMT 0)

Mikey72 said...
Njs:
Actually, the first reading I got from the biopsy from the local uro was GS6. Then I sent the same slides to MSKCC before my first meeting with the oncologist. I heard all the guidance about getting it read by someone who only analyzes prostate slide. It was MSKCC that said GS7. Then the final reading turned out to be GS6. I don't meet with my Dr again till mid December, after the results of my first post op PSA are in, but I plan to ask him about the different scores.
Otherwise, you are right. It appears I got the best outcome possible. In addition to an awesomely dedicated surgeon, an awful lot of prayer warriors were very busy during my surgery. I am very blessed.
Mikey

Let us know how he explains the downgrade. In any event, you are the exception that shows that GS6 is not always indolent.
Posted 11/18/2013 4:25 AM (GMT 0)
Hi DreamerBoy,
Thanks for responding! You are correct that I could die from something else, but not knowing what that will be I can only take preventive measures (not drive to fast, not eating something poisonous, make sure my climbing ropes are good, exercise, diet, etc.). But I know I have cancer and that there is some chance it will kill me. So I look at that as as a standalone problem I can deal with regardless of what else might kill me. As a problem if there is a 2 in 100 (or even 2 in 1000) chance PCa will kill me before I reach 80 then I should do something about it.

Like you say, each person has to take the path that the believe is right for them. I have have the utmost respect for those that choose AS, I am just not sure it is the right path for me. Especially if I might improve the odds of living longer (#1 objective) by taking a treatment option.

Good luck to you on AS... wish you a LONG and healthy life!
Posted 11/18/2013 4:30 AM (GMT 0)

njs said...

Casey59 said...

In fact, the reality is that deferred treatments have been shown to have the same or better outcomes than immediate treatments among cohorts of men with initial diagnosis of low risk cancer.

Casey,

That's the first time I've ever seen it stated that deferred treatment has been shown to result in better outcomes. I am aware of at least one study that showed the opposite. Can you elaborate on the details of the studies to which you are referring?

They certainly do not have better outcomes on the severity of potential side effects.

One of the reasons I chose treatment was because I was told by numerous experts that my chances of over coming potential side effects was better the younger and fitter (including sexual fitness) I was.
Posted 11/18/2013 5:19 AM (GMT 0)
Hi Casey,
Thanks for responding! I appreciate the comment to keep researching, but I am a pretty quick study and not sure how much more reading will accomplish (I only put a small fraction of what I have looked at in my original post).

As far as NCCN guidelines maybe some clarification on my analysis is in order. I believe you are referring to the Guidelines for Patients (link), page 44 where it states:

"Active survellance is also an option if you are likely to live 20 or more years."

but it also states:

"This option may be of interest if you're younger and want to avoid side effects until treatment is clearly needed."

In my case, I am not overly concerned of the side effects.

What I am referring to is the Physician Guidelines (link) where I am classified as a Very Low Risk (ref: PROS-1) so therefore use PROS-2 for Initial Therapy. In PROS-2, under Very Low Risk I have a life expectancy of greater than 20 years so it says to use the Initial Therapy for Low Risk. If you then go to this section of PROS-2 (same page), I have a life expectancy of greater than 10 years so it says I have all three options (it doesn't preclude one over the other) AS, radiation or surgery. BUT, AS has a footnote (e) that takes you to PROS-B where it states:

"Active surveillance is usually appropriate for men with very low-risk prostate cancer when life expectancy is < 20 y or men with low-risk prostate cancer when life expectancy is <10 y."

It does not state it is an option or consideration for men with a life expectancy of greater than 20 years. I also did not find anything relevant in the discussion pages that follow the charts.

In the end it is a bit muddy around AS (given the verbiage in the patient guidelines) but only AS has an asterisk next to it. In reality, to me, it means any option is viable and nobody can be wrong... do what you and our physician(s) think is best for you.

Thanks again!
Posted 11/18/2013 7:44 AM (GMT 0)
I think, overall, Casey's case for AS as a strong possibility in your case has a lot of validity. You pretty well meet the accepted criteria for AS, and the beauty of it, if your circumstances or PC history changes, you still have all the same options on the table.

David in SC
Posted 11/18/2013 1:12 PM (GMT 0)

davidg said...

njs said...

Casey59 said...

In fact, the reality is that deferred treatments have been shown to have the same or better outcomes than immediate treatments among cohorts of men with initial diagnosis of low risk cancer.

Casey,

That's the first time I've ever seen it stated that deferred treatment has been shown to result in better outcomes. I am aware of at least one study that showed the opposite. Can you elaborate on the details of the studies to which you are referring?

They certainly do not have better outcomes on the severity of potential side effects.

One of the reasons I chose treatment was because I was told by numerous experts that my chances of over coming potential side effects was better the younger and fitter (including sexual fitness) I was.

This recent study: Delay of surgery in men with low risk prostate cancer concluded:

"In men who met the D'Amico low risk criteria, a surgical delay of 6 months or more was associated with significantly worse radical prostatectomy outcomes, including more pathology upgrading and a higher rate of biochemical progression. Low risk patients choosing to defer initial definitive therapy should be counseled regarding the possibility of worse treatment outcomes at a later date."
Posted 11/18/2013 1:55 PM (GMT 0)
hi mikla

 I'm from Michigan and had my surgery at saint johns in Detroit. if you are from the area or considering traveling for treatment email a moderator and get my email address and  i'll give you my uros name. I don't know why i'm not comfortable putting his name on this forum but I am. I have nothing but praise for him, he's very dedicated and talented. I have family members in the medical field (my niece is a doc and my sister director of surgery) so I obviously vetted him.

good-luck

carl

Posted 11/18/2013 7:01 PM (GMT 0)
Hi Purgatory... I agree that AS is still a possibility. I was just clearing up my interpretation of the NCCN guidelines (though I think they are pretty easy to follow) since it was stated that my "interpretation was off". I also wanted make sure the references were available to anyone else reading this thread in case they wanted to check for themselves or use them to make their own choice.

It looks like you have had some challenging times... I wish you all the BEST and a long life!
Posted 11/18/2013 7:04 PM (GMT 0)
Hi riverrunner (love that handle),
Thanks!... just realized there is no internal messaging system on this forum... odd. No problem on not posting the name, I completely understand and it is your call.

So emailing mods is the only way to trade info?... what year is this?
✚ New Topic ✚ Reply
12