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Posted 1/7/2011 10:27 PM (GMT 0)
BuiDoi:

I'm not going to hijack Harry's important thread by arguing with you.  If you want to start a separate thread to debate some of the questionable stuff you said fine...otherwise I'm done with any discussions with you on Harry's thread.

Tudpock (Jim)

Posted 1/7/2011 11:05 PM (GMT 0)
Buidoi,
The rate of secondary cancers due to radiation for prostate cancer is 0.5% exactly the same rate as immediate death on the operating table for a prostate surgery. Both are rare and should not influence one's treatment decisions. I really don't know where you come up with some of the ideas you have, but they surely are not helpful to the newcomers on this forum who are looking for real answers to their situation.

JohnT
Posted 1/7/2011 11:31 PM (GMT 0)
JohnT, I think you would find many of us agreeing with you about some of the bizzare and unsound and unproven ideals and suggestions coming from buidoi's posts. I think the moderators should look beyond the freedom of expression part, and look out for potential danger in this constant giving of unsound advice.

For a newcomer, this is a frightening world to be thrown into, and you are forced to learn and think about a lot of things that might have been totally alien before their dx's.

David in SC
Posted 1/8/2011 12:28 PM (GMT 0)
Harry, Welcome to the forum.

Insisting on a second opinion is good advice. Why anyone in the medical profession would think it is odd is kind of unbelievable.

The second opinion lab will get the slides from your biopsy to look at. I doubt they get or care about what other labs reported.

I had IMRT and brachytherapy in 2Q2010 and am doing fine. I met with my radiation oncologist on Dec. 29th and he said
everything looked great.

I am having a great time playing the "use it or lose it" game with my wife. We're both glad we're not playing the "try to get it back" game.

I am resolved this year to try not to correct misinformation that is posted. It wastes too much of my time with no change to the poster who keeps doing it. I just sigh.
Posted 1/9/2011 12:25 AM (GMT 0)
"After my first time with RT, ...... was dx later with Chronic Radiation Fatigue......... and I was 10 years younger too. ........Now, 13 months after my SRT has ended for PC, still dx with additional Chronic Radiation Fatigue........Can only assume that radiation causes different levels of fatigue and damage to body, some guys it seems to be temp condition, and to others, like me, its a perm thing. ..."

https://www.healingwell.com/community/default.aspx?f=35&m=1982000&p=2


It's clear that I have NO idea what I am talking about,
so I suggest that any readers just ignore my ramblings.

I just think along the lines that the medical Profession does whatever they can to get you past this current crisis. Whatever it takes !
Whatever happens after, say in 1 or 10 or 15 years time, is TOTALLY irrelevant.
I just think that IF you can choose an option that can give you the BEST chances for the longest time, then THAT is the better choice. Some don't have the choice.. They accept the advice that is given.

But - what would I know ?
This time last year I discovered I had a problem.
Most on here seem to have a protracted battle, going from treatment to treatment.
Oh, how sorry we all feel for these situations !

Just ignore me !
Posted 1/9/2011 8:19 PM (GMT 0)
This forum is great. I certainly have a lot of info to consider.
I edited my first post and added more data. Pls review.

Here's where I'm at today:
1. The Uro said my PSA would continue to elevate and I believe him.
2. The biopsy needle may have missing something worse.
3. Surrounding tissues may be involved.

If the bone scan is neg….At this point I am leaning toward Dr Edward King in Ocala doing the Da Vinci….and if there is recurrence then do radiation. What do you think?
Posted 1/9/2011 8:30 PM (GMT 0)
Harry,

I think it is a good plan so far. Folks need to remember, that a prostate biopsy is an estimate, and doesn't always show the total extent of cancer present. If you are like most men at this point, your bone scan should be negative for PC, some would argue there is no need for the scan. Having the robotic done with an experienced surgeon is good, and again, if you should have recurrance, and hoping you don't, then you still have a radiation card to play out for a possible curative attempt.

David in SC
Posted 1/9/2011 8:48 PM (GMT 0)
buidoi:

i don't appreciate you cutting and pasting an important post of one of my answers, to create another of your rambling discourses at my expense. if you want to know about my 2 major radiation experiences, 10 years apart, then ask me directly.

don't appreciate your "poor purgatory" remark in your post either. i am only playing out the cards dealt to me in my personal life. i do not feel sorry for me, nor expect anyone else to either. my experiences are not for you to promote your odd and often bizzare view of PC related matters. Felt like you just exploited me for your own gain.

To set the record straight, especially for any newcomers confused by the above ramblings, this is what happened:

After my 3rd bout of the ultra rare and malignant cancer, Porocarcinoma, it had spread to the lymph nodes in my throat. Three surgeries took care of the physical part, and since there is no known chemo or HT for this type of cancer, my medical oncologist (an expert with this cancer type with 2 patients) had me go through 70 gys of radiation in the neck and throat. It did a lot of collateral damage, this was in the pre-IMRT and IMGT days, so there was a lot of "scattering". It left me with perm dry throat, killed my taste buds for a full 6 months, nearly took out my voice box, and left me with perm. radiation fatigue, at the time, I recovered to about 75% of pre-radiation levels, and it has never improved.

Then late last year, due to a quick post-surgery BCR, I had to endure 72 gys of radiation over 39 treatments for SRT. Due to complications, I lost the perm. use of my bladder and bladder neck due directly to radiation damage, and thus needed the ilieal conduit surgery I had in September, of which I am still recovering from, which left me with a perm. stoma below my navel, so now I have to pee into a bag for the rest of my life.

Two major bouts of radiation in a 10 year period is a lot for anyone to endure. The damage from the first time, was expected in how the radiation was delievered in those days, but on the SRT this time around, it was clearly malpractice on part of the radiation clinic, as I reported being "burned" after only 4 treatments, and then having my radiation oncologisit brushing it off as "imgagination" and the famous 'it can't happen", blah blah.

Those are the facts, but buidoi, its my testimony, my experience, my pain and terror, its not yours to use as you see fit. Try to remember that next time.

David in SC

Post Edited (Purgatory) : 1/10/2011 1:07:15 PM (GMT-7)

Posted 1/9/2011 9:37 PM (GMT 0)
Harry, I don't know anything about Dr. King in Ocala but, seeing as how you are in Florida, it might make sense for you to travel to the Dattoli Cancer Center in Sarasota.  Not only will you get a color doppler scan (see other threads on this forum for comments about this procedure), but you will also get a radiation perspective from one of the most best respected cancer centers in the USA.  Even if you ultimately decide on surgery, you will have the satisfaction that you have done your homework to the best of your ability.  Check out www.dattoli.com for more info. 

And, no I do not have any financial interest in this center nor is Dr. Dattoli my brother-in-law...LOL.  Just an excellent opportunity for an opinion since you are in Florida.

Best wishes,

Tudpock (Jim)

Posted 1/9/2011 9:50 PM (GMT 0)

.Thanks, David for the full story..  That is exactly what's needed - The Full Story.

Sorry that I used your post to highlight MY thoughts, but many make reference to other threads as they are all public, once entered.
You are not alone and I was reading of a list of individuals who are right now, instigating legal action for damages following radiation therapy.  -- and David - You should not be ignoring your problems (because you are strong) and implying that they would never apply to someone else.


I find it totally bizarre that some take offence at seeing the facts and the truth as I have learned them.  It is as though we had Specialists here, gleefully saying that there are no problems with any of THEIR treatments.  They are selling THEIR services, but hopefully trying to help you at the same time.

I can only repeat my previous comments.. 
Radiation does cause damage - If it did not, then the cancer would not die.
Radiation DOES have side effects, and results tend to be the mirror of Radical Surgery.. 
After Radical Surgery, the effects are immediate and can be expected (hoped) to improve..
After Radiation, there might be NO effects at first, but you can be pretty sure that things will get worst, so "Use it-Whilst you can"

If I had a cancer that had escaped the capsule, then I too would likely consider radiation.
If I had a contained cancer (suspected, believed, Dx'ed), then I would keep Radiation as my BIG gun, and accept that even with Surgery, I will be no worse than I WILL likely be after a few years after Radiation.

There was a reason why Professors (Unpaid/Personal Advice) advised me to FIRST have surgery, but unfortunately some find the suggestion disturbing. 
There is a reason why a Technician (Radiological) told me to be cut..  He saw so many come back years later, in a far worse state.   Perhaps that is irrelevant, as they were "Extending" their lives anyway

Harry - Congratulations my friend - You sound like you have got your head around the problems, and God willing, you will be like the great majority of us...  CURED of Prostate Cancer  !  
You WILL have other silly issues, but you will evolve and with the peace-of-mind, be better for it, and live a full life.

PS - Your new figures are interesting - thanks - The figures are a road-map of an individual's journey with PCa.
What a classic display of how the problems hide, and hide and finally JUMP out at you 
We all only hope that when it does jump, you have the time to get in a KILL shot.
You look like you have !
..
.


Post Edited (BuiDoi) : 1/9/2011 11:27:00 PM (GMT-7)

Posted 1/10/2011 7:56 PM (GMT 0)
My bone scan came back today "normal". Next step meet with the radiologist.
Posted 1/10/2011 8:08 PM (GMT 0)
that's good news at least, Harry. Keep us posted
Posted 1/21/2011 12:25 AM (GMT 0)
I met with the Radiologist today. He recommends 43 sessions of Calypso beacon guided IGRT.

I'm trying to figure out the outcome rate. Any ideas? ...I know we're not doctors....but looks like a lot of knowledge here.

Thx
Posted 1/21/2011 5:36 AM (GMT 0)
Harry, it is my opinion that if your cancer is curable, then either surgery or radiation will cure you..The problem is, nobody knows for sure when the horse leaves the barn..Every case is different and every case responds to treatment differently..I believe luck has just as much to do with it as anything...The BEST surgeons get excellent results without creating too much harm, it's over in a day, it's relatively cheap, and they can biopsy the entire prostate which has clear advantages as to determining the need for further treatment..Surgeries side effects or complications are immediate, there is no waiting..

Radiation is benefiting from a vast improvement in equipment technology so accurate studies are impossible..Most of the long-term studies that track treatment outcomes were done on men who underwent "3-D Conformal" treatment...most of those machines are now retired so looking at their results does not accurately depict what is going on today...The Calypso and Rapid Arc machines are FAR more advanced and one has to assume will produce better results or at least fewer side-effects than the older machines which were pretty good, equaling surgeries cure rate in most cases..Seed implanting has also made big improvements. Doctors are now able to achieve far more accurate seed placement, avoiding many of the side effects once associated with this treatment..

So basically it's a matter of choosing your side-effect risk and what feels right for you...You make your choice and you do it and you don't look back..Hindsight is always 20-20 but nobody can see the future...
Posted 1/25/2011 1:59 AM (GMT 0)
The radiologist said if there was a relapse there would be no surgery or further radiation.

The urologist said if there was a relapse we could do salvage radiation.

I like the idea of having a plan "B".
Posted 1/27/2011 5:05 PM (GMT 0)
I have decided to do the Da Vinci robotic assisted prostatectomy at Monroe Regional in Ocala. Should I relapse radiation would be an option.
Posted 1/27/2011 6:50 PM (GMT 0)
Buidoi:

I don't profess to be any kind of expert on prostate cancer treatments although I have done a ton of research and have gained a lot of knowledge ( and support for which I will be forever grateful ) from this forum, I do not agree that your thoughts and comments on radiation are "bizarre and unsound".

Quite frankly, I think you are spot on and make a lot of sense, notwithstanding that most don't want to hear it.

Of course we all hope for the best possible outcome, but to ignore the somewhat obvious is simply wilful blindness.   

Posted 1/27/2011 6:58 PM (GMT 0)
By the way good luck to you Harry.

Posted 1/27/2011 7:43 PM (GMT 0)

Harryheart said...
The radiologist said if there was a relapse there would be no surgery or further radiation.

The urologist said if there was a relapse we could do salvage radiation.

I like the idea of having a plan "B".

Harry did your uro tell you if plan B if needed only has a 30% success rate? Many urologists and radical surgery supporters tend to gloss over or not mention that fact. Although for many it's their prime factor for choosing radical surgery.

I agree with Dave that this threads BuiDoi posts are bizarre and unsound. They are hearsay and just personal opinions he tries to slant as facts. Beware of fairly new posters here full of advice soon after their treatments. He and others seem to need a justification period afterward. Thus many tend to persuade others for the same treatment.

All I primarily preach for the most is to take your time, be PATIENT and fully educate yourself on all the options and all the possible side effects. Don't be like some and put more thought into buying a new car than possibly life changing radical medical procedures, which not only effect you but family too.

Good luck Harry.
Posted 1/27/2011 8:30 PM (GMT 0)
Hi Ziggy9

After spending a life time working with numbers I know there are "Lies, darned lies, and statistics".

My Uro does the cryotherapy....aka iceballs. He said it was 100% ED. What is your experience?
Posted 1/27/2011 9:35 PM (GMT 0)
Harryheart,

My Uro also confirmed that cryotherapy is 100% ed and most likely incontinent, too.

He also advised me against surgery as the Partin tables and nomograms showed a significant enough probability of escape from the capsule. He said that radiation is far superior to surgery if margins are involved. I checked with many others and decided on High Dose Brachytherapy and IMRT.

He further said the key is to have the very best Plan A. It is a misnomer to criticize not being able to operate after radiation. Typically, recurrance after radiation is systemic and not in the prostate. So surgery after radiation is mostly moot and, I think, a red herring thrown up by surgeons. However as the forum members experience show it is very common to require radiation after the operation due to the high incidence of positive margins, and thus failed surgeries.

My attitude was that I was somewhat likely to have failed surgery and then face radiation. So why take on the added risks of surgery?

Datolli, Critz, and Dumanes (the most significant radiation centers) are all publishing 15 year experience showing that long term results of surgery, permanent seeds, and HDR are all about equal. The biggest wild card to me is that the surgery appears to be far more contingent on the actual surgeon on that day and that there can be very great variability of skills and performance among surgeons.

I remember seeing that Datolli reported on his website that a recent Duke (I think) study is showing a higher failure rate with robotic than open surgery. Something like a multi-fold increase after three months indicating that robotic is not the cure-all.

If I were close enough to see Datolli, I definately would see him and get the details of their treatment. He is the one that Dr Snuffy Meyers used for his own treatment several years ago.

What ever you do, best wishes and go all in. You have many options that can all work well and that all have their own set of side effects.
Posted 1/27/2011 11:17 PM (GMT 0)
Harryheart said...
Hi Ziggy9

After spending a life time working with numbers I know there are "Lies, darned lies, and statistics".

My Uro does the cryotherapy....aka iceballs. He said it was 100% ED. What is your experience?



First of all there's TFT cryotherapy and full cryotherapy that destroys the entire prostate such as brachytheraoy does. Mine was targeted so only a small area is destroyed in an effort to kill only the cancer cells. A 3D saturation biopsy is mandatory before TFT to best locate the PCa. My doctor has also done TFT now with a laser. I'll leave a link to his site if you're wanting more details. Thus the only sexual problem I have as I said is 60% loss of ejaculate. I assume even with that loss it's still better or at least more natural than dry orgasms that all here now experience post surgery.

http://alprostate.com/aboutus.aspx
Posted 1/28/2011 2:57 AM (GMT 0)
Thanks for all the replies.

Both the uro and the rad says either rad or surgery will work in my case.

I think I'm starting to suffer from information overload....is this normal?

 

Posted 1/28/2011 2:30 PM (GMT 0)
Welcome to the club. There are so many options that it does overload us. Then we enter the "second guessing" phase. Is what I have just done going to turn out the best? That is now my challenghe. I have completed my primary therapy at the end of December. Starting next week I will see my oncologist, then urologist, and then rad-onc to get the initial assessment of the primary therapy and determine what comes next.

You have worked well with numbers and appear to be process driven. If your urologist and rad-onc both say that each will work well for you, then the reasonable choice is the method that is less invasive, less risky, and offers the better quality of life. Based on that analysis, your direction becomes clear and you can regain confidence in your choices. Once you decide, you can be singular in your approach and attention to the method and relieve your mind of the overload from competing, but now, irrelevant methods.

Best wishes and let us know how you do.
Posted 1/28/2011 3:28 PM (GMT 0)
I like the idea of the prostate and at least one node being sent to the pathologist. I understand no one really knows exactly when and if the cancer has spread....till it has spread.

My uro has done "a couple hundred" Da Vinci prostatectomys. He's been around a long time. His practice appears to be very sucessful. We live in central Florida where there is an abundance of old geezers like me. I like him. I trust him.

The hospital uses a dedicated team of assistants on the Da Vinci robot.
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