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Posted 12/20/2009 4:10 PM (GMT -8)
Hey folks, since i`m still very new to this problem i`ve been reading alot and this issue struck me as very interesting. With the scope of what i`m about to put my body thru to repair this problem i keep having these thoughts of what if this would of never come to be a significant issue? I would be very interested to know how you got past this. My numbers point to very early detection, and i have confered with 3 very well respected doctors that all say do the robot and i`m ok with that if thats what is needed but dang its hard to pull that trigger when you`re feeling good and all seems well. Thanks for your thoughts, Tim
Posted 12/20/2009 4:22 PM (GMT -8)
t-dog,

you do bring up a good point that all of us have to struggle with. Now some men, have had prostate troubles (non cancerous) for years and years before they ever had prostate cancer. others, such as myself, never had a single issue. felt fine done there, nothing but negative DRE's for years, no infections, no swelling, ability to hold urinating for as many hours as needed, never having to get up at night to pee, etc. If it wasn't for having regular PSA tests since age 50, I still probably wouldn't know that I have cancer. Its scary too, thinking of that, that despite my surgery, corrective surgeries, lingering issues associated to my prostate cancer, I would still probably not even know I had it, let alone know that was raging war deep inside my body.

so yes, directly before my diagnosis, I was feeling great, no major health issues at all. and yes, it was a bit hard to come to the decision to agree to a very complex surgery with well know side effects and quality of life issues.

I don't remember your age, Tim, but I was only 56 at dx, and got a wonderful wife and family to think of, so that was all the motivation I needed to push on ahead once I knew I had cancer.

We are all guilty at times playing the "rewind" button in our minds, and the "what if" a thousand times, afraid that part is human nature.

My real choice, of course, would never to have had prostate cancer.

Glad you are still working through your cancer, treatment options, and thoughts on the subject in general. Keep us posted, and ask as many questions as you wish, or if you need to vent, or bounce something off the wall, we are here for you brother.

david in sc
Posted 12/20/2009 4:57 PM (GMT -8)
Tim,
It's basically a personal decision; quantity of life vs quality of life. I don't know your stats, but if they meet the Hopkins criteria your chance of dying PC is about 2% on Active Survelience. And guess what? Your chance of dying after being treated is 2%. The upsides of AS is that you may never have to be treated and if you do get treatment later you have bought a few years without any side affects and virtually no risk. If your PC is small; lets say 1mm, and doubling time is 6 years, in 18 years your tumor will be 4mm or still a pretty small tumor. If your PSA doubling time drops to under 3 years, get treated and it's still in a very non agressive stage.
The down side is you have to get PSA test at least every 6 months and a biopsy after the 1st year and probably every two years after that, and you will worry that the pc has escaped. For those of us that have been treated, we also have to get a psa every 6 months and worry that we don't have a
reoccurrance and the pc has escaped.
JT
Posted 12/20/2009 8:10 PM (GMT -8)
David, i`m 50 and my current psa is 2.6 it was also 2.6 last year. It was 1.4 in 2001 when i began having it tested. The free fraction number seems to be what the concern was, it was 14 in one test and 16 in another, 3 positive samples in biopsy all in one quadrant on right side, left side was clear. Gleason 6.
Posted 12/20/2009 8:27 PM (GMT -8)
Everyone will have different reasons for the choices we make. Myself, I was 43 at diagnosis. It was very likely if I had waited till 50 to get my first test the PCa would have jumped outside the prostate. You have to make the decision that is right for you!

Good Luck, KW
Posted 12/20/2009 9:34 PM (GMT -8)
Well there is nothing to get really past for you, just a tough decision we all have to make with this diagnosis, Everybody's different, for me my biggest push towards surgery was due to strong family history of cancers that killed my mother and father, breast and colon cancer. I wanted it out and be done with it, no repeat psas and biopsies for me. Now prostate cancer is nothing like breast and colon cancer if you have a low gleason score of 3+3= 6 with 2 cores positive like I had. But that's where my head was at. There are many alternatives, AS, radiation, hifu, cryo, besides surgery. You will have to make this tough call, no clear cut answers how to treat this cancer compared to other cancers.............
Posted 12/21/2009 1:13 AM (GMT -8)
If you're still having second thoughts, I'd confer with a doctor who thought that Active Surveillance was a reasonable way to treat the disease and see what his take was on it. I went through several "well-respected" doctors who suggested aggressive forms of treatment, but instead elected for AS after I went through some more testing and had my cancer staged with a color doppler test.

If possible, I'd seek out a doctor who does color doppler testing. Take your time and continue researching. It sounds like your numbers are low enough that you don't need to rush into any treatment.
Posted 12/21/2009 3:55 AM (GMT -8)
T-Dog,

The decision is tougher when there are no side effects, I was in the same position. But the reality is that the PC is always going to grow, even though its growing slowly, it is in there and will need to be addressed

I chose to get it removed via Robotic Surgery and just passed 8 months post op and am past all the issued except ED, and ever that in all honesty is far better and way more fun with the medication I am taking when I want to play

Active Surveillance was not for me, I felt that Biopsy's 2-3 times a year and waiting for those reports would be far more stressful to bear. Looking back to where I was last year I 100% made the right call

There are other factors aside from PC that you may also want to consider

1) Are you healthy enough to have surgery now ? What would happen in 5 years if you had a heart attack and could not have surgery ?
2) Medical insurance, that is a big ? for everyone now with this new heath care reform bill, who knows what will be covered in 5 years

There is no dispute that recovery will be easier the younger you are.
Posted 12/21/2009 6:00 AM (GMT -8)
A thorough education that you go and get is your best friend, PCa has has been looked into by tens of thousands of patients and various docs for years...guess what??? No total concensus, no preciseness, no definitives...atleast to the 100% level...so you have to sort through this twilight zone and jungle to get your best decision you can, for your scenario. Your ##s appear very low end, again "appear" is the key words, even that can be reassessed or found different than you know of right now. It can be the twilight zone and a jungle, no answers are that easy or clear cut you will likely find out. You have alot of choices including nothing at this juncture, could even chose drug therapies for control and wait alot,did the docs even mention that was possible?????????????????????????????????????????????? Huh....how much is treatment worth??
Guessing your numbers appeared low, you might want a copy of your pathology as to atleast what they found in those few findings.
Posted 12/21/2009 8:26 AM (GMT -8)

t-dog said...
Hey folks, since i`m still very new to this problem i`ve been reading alot and this issue struck me as very interesting. With the scope of what i`m about to put my body thru to repair this problem i keep having these thoughts of what if this would of never come to be a significant issue? I would be very interested to know how you got past this. My numbers point to very early detection, and i have confered with 3 very well respected doctors that all say do the robot and i`m ok with that if thats what is needed but dang its hard to pull that trigger when you`re feeling good and all seems well. Thanks for your thoughts, Tim

I can identify with this. I never had any symptoms and always felt fine. That said you must pick what to do ranging from a radical treatment to AS. There are the after effects to consider and weigh in as to quality of life issues against added possible longevity. Tragically it's really a crap shoot as to the severity and how long the effects can happen there are guys who after a couple of months are continent and others who never are again. This is a very pro surgery site so you must consider that in recommendations here. The key to surgery is are you really looking at it rationally? Many here with low numbers opt for it to" get it out of them" but are they treating anxiety more than they are treating cancer? If it's local great if it's systemic there really isn't any long time successful getting it out of them. It's a complicated sometime contradictory maze you'll be wandering choosing what to do. Take your time deciding for if you go with a common radical treatment there aren't any do overs afterward.
Posted 12/21/2009 8:45 AM (GMT -8)
I really like the idea of AS in cases where the cancer is minimal and non-aggressive. To be frank, we all go through AS whether we treat the disease or don't treat the disease. So if my best friend had a small cancer with a GS 5 or 6, I would highly recommernd doing nothing except (1) changing diet and lifestyle and (2) getting tested until the pca begins doubling at a faster rate.

As to most of us who feel great (no symptoms) when diagnosed....that is the beauty (maybe that word is too optimistic) with psa testing. Those who find out they have pca because they have back or bone pain usually have psa's into the hundreds or thousands- way too late for primary treatments.

Posted 12/21/2009 9:13 AM (GMT -8)
T Dog,
Looking at your stats, expecially the PSA; it hasn't moved in a year and took 8 or 9 years to go from 1.4 to 2.6. The free psa tells you nothing; it only indicates the probability of PC and not what it is doing. Only tracking PSA over time will give you a good idea of how the pc is manifesting itself. Right now all indications are that it is slow growing or not growing. You have pleanty of time to make a decision. I agree with Franchot, get a color doppler and see a doctor that is experience in AS, before you subject yourself to a radical treatment you may never need.
Most of us would trade numbers with you any day. Pick up a copy of Strums book "A Primer on Prostate Cancer" and educated yourself. Remember, most doctors have been taught that if Cancer is Dxed you must get it out. This is proving not to be true and in most cases the cure is worse than the disease.
JT
Posted 12/21/2009 9:21 AM (GMT -8)
t-dog:

We have discussed this ad nauseam in threads before you came aboard.  There are some strong opinions about the topic of overtreatment.  You might want to scroll back and look through some of them.

My advice in a nutshell:

1. Take your time.  Do not let anyone rush you.

2.  Question everything someone in a white coat tells you about prostate cancer.  Question it, don't necessarily reject it.  Most advice will match up quite nicely with the doctor's financial interests; advice that doesn't is rare and especially valuable.  But above all, make your own decisions - at this point doctors are only advisors.

3. To put yourself in a position to make those decisions, go straight to the medical literature, armed with a good online medical dictionary.  I found these two articles very helpful when I went through this process in mid-2008: (1) Timothy Wilt et al., "Systematic Review: Comparative Effectiveness and Harms of Treatments for Clinically Localized Prostate Cancer," 148 Annals of Internal Medicine Issue 6 (March 18, 2008); and (2) Martin G. Sanda et al., "Quality of Life and Satisfaction with Outcome among Prostate Cancer Survivors," 358 New England Journal of Medicine 1250 (March 20, 2008). I believe that at least the former is available online. There are other good articles that came out after my surgery last August.  Do your own research.

4. In addition, there was a recent thread (last week?) about Dr. Peter Scardino's recent presentation to the New York Chapter of the American Urology Association.  Find that link and study that presentation.  But again, this is only one doctor's opinion (although one I personally think highly of).

5. Finally, read and understand Dr. Otis Brawley's piece entitled "Prostate Cancer Screening: Is This a Teachable Moment?" published in the Journal of the National Cancer Institute and online on August 31, 2009.  Dr. Brawley is controversial, to say the least, but whatever you end up thinking about him, he is an important voice that you should at least understand.  He has been widely vilified, misquoted and quoted out of context - so read him in the original, slowly, and in full to get his nuanced approach, then make up your own mind.

Good luck.

Zen9   

Posted 12/21/2009 12:16 PM (GMT -8)
Thanks alot for the input guys. If i just took the rosy outcome the doctors say this deal will produce at face value this would be a no brainer. But obviously after doing a lot of reading here this deal is hardly a cakewalk. Also a big consideration for me is from Mar. thru Oct. i strap my self into a racecar 2 times a week or so and i have to be sure this will still be possible after the surgery. Doc says should not be a problem, but...... My wife who is in the medical field is a get it out of there kind of person and is behind me 100% whatever we do. If you`ve ever known anyone involved in professional motorsports you know that mortality issues seldomly are thought of, we all have the i`m ten feet tall and bulletproof mindset and i`m finding my inner voice telling me to wait it out. And my doctors saying do it. Dang lifes hard!
Posted 12/21/2009 1:03 PM (GMT -8)
T-dog,

Once they take out the catheter, which is likely 10 days, you should be able to slowly get yourself back to where in maybe a month you can do anything really. At worst you will need a pad for a few months to deal with any leakage

How would you feel if you passed on the operation due to racing this year and come October 2nd you discover the PC has spread and you are now having symptoms, if you could deal with that happening then waiting may be ok for you. Would each year be the same deal with racing ? if so then you may want get get it removes asap while you are younger and can recover quicker
Posted 12/21/2009 1:05 PM (GMT -8)
Most of us have no physical symptoms of PCa -- if we do, then it's too late. I was Gleason 9 at biopsy, no symptoms but fortunately organ confined, so surgery was the standout best option for me.

However at your age (50) and low numbers, I would have chosen AS. Of course if you go to doctors who do surgery, that's what they will recommend. If you are the worrying type, you may want to "have it out" and be done with it. You will have ongoing PSA tests anyway regardless of what treatment you chose. The difference with AS is of course ongoing biopsies.

With surgery, you can expect to have ED, at least for a time. How significant is that for you? Incontinence is more of a problem with robotic surgery than open -- at least that's what the stats show. I imagine you don't want to be incontinent while bouncing around in a race car!

I agree with the other posters here -- AS deserves your serious consideration.
Posted 12/21/2009 1:55 PM (GMT -8)
The parallel question for me is how does a G7, 8 or 9 get there ?

Does it start as an HPIN, grow to a 6, then progress up the ladder to a 9 ?

You will find mutiple opinions on that question. If the original cancer starts out as a G9, then time is important to get that aggressive cancer out after it is diagnosed.

If there is a growth progression, which I have never found a good answer to, then time is also important that it doesn't grow to an aggressive cancer and begin spreading.

Obviously, for me starting out as a 9, I was left with few options. But if I had a 6, and could not find an answer that satisfied this question sufficiently for me, then I would probably decside to move sooner than later.

While AS may stall off the potential side effects for a few months or years, to me it would like having a time bomb around my neck, (or in my crotch), always waiting for the buzzer to go off.

Goodlife
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